Abundance

I have sleepless nights, but I’ve always had a bed.

I’ve had to move from home to home, but I’ve had a roof over my head.

I’ve had thirst, but I’ve always had water.

I’ve had food, despite the nausea.

I’ve been depressed, but I have also had peace.

I’ve lost hope, but I’ve had prayer despite grief.

I’ve been scared, but I’ve always had safety.

I’ve had trauma, but I’ve had help in recovery.

I’ve had loss, but I have also gained.

I’ve had joy, amidst the pain.

When you’re troubled and it looks like no one’s there, reflect on all you have and know that God cares.

~
Corina
1/1/23

Does Dialysis Hurt?

Have you or a close family member or friend been diagnosed with kidney disease? Do you know someone who is struggling with the dietary adjustment they need to make to prolong the life of their kidneys and stay off dialysis for as long as possible? Or perhaps the doc has already advised them to prepare to go on dialysis in the future and they are now wondering what it entails and most importantly will it hurt?

I remember feeling very afraid at the thought of a machine being connected to my body when I first heard about dialysis at age 26. I was told that I need to slow down the progression of kidney disease otherwise I will be on dialysis very soon. By default, the assumption is that dialysis will hurt, but in reality does dialysis really hurt? There are so many aspects to dialysis, a yes or no answer would not be sufficient as it isn’t straight forward.

You or your family member first need to understand the purpose of dialysis and what the diagnose of end stage kidney failure means. At this stage a human being is unable to go on living longer without assistance fr dialysis to filter our excess fluids and toxins fr the blood. This means without it, the accumulation causes other organs to suffer and eventually collapse. The most PC statement ever given to me about not having dialysis is that it isn’t compatible with life. It took me a while to truly understand and accept this.

When I accepted that I was willing to seek treatment and get dialysis done. Many aspect of the process comes with ups and downs but if the person wants to prolong life and give himself or herself a chance to continue living than this is their only option, second only to having a transplant done. This can be thru a willing donor, or being put on the list for a deceased donor. Either way, if the person has already been diagnosed with ESRD, they will need dialysis to continue living while waiting for or going thru the transplany process. If the person is at stage 4 CKD then a preemptive transplant can be done without ever having to go on dialysis prior.

So the “does it hurt” question cannot be answered with a yes or no. It’s different for everyone and also depends on the type of method they select for dialysis. Personally I did Hemodialysis, so that involved needles but once they were in the 4 hour process itself didn’t hurt at all. There are times there are complications as the body does not remain the same everyday. How we arrive for a session each time differs. Out body’s minerals and electrolytes, water weight, toxin build up is different every day. So this coupled with the settings on the machine may alter the experience. Some of the settings that had a great impact on me was the pump speed and the volume of fluid extracted. They also changed the calcium fluid attached to the machine when they better understood my body.

The thing is you and your centre needs time to get to know your body and what it can or cannot tolerate and what is it’s reaction. Worry is of no help. Take it one day at a time is my advice and the knowledge and info that comes is a process. Nobody can learn everything all at once. Only time and experience can help u manage things better.

I am not strong, I cannot lie.

I won’t lie. I feel a bit down today. Well, not a bit. Actually a lot. I went for my check up and the news wasn’t great. I haven’t been feeling so well lately. At first I thought maybe I caught a bug, maybe it was covid, but tests were always negative. I realised I was pee-ing less and feeling tired more than usual. Headaches and dizziness would come often. My blood pressure also started dropping and becoming really low.

Today’s results showed an increase in my serum creatinine which means my kidney function isn’t doing great. The immediate thought is rejection, again. My liver levels are concerning, my red blood count is low, I have an elevated level of blood in my urine, among other things. So I need to go back next week. If results are the same or worse, I have to go in again for another biopsy. This would then be my SIXTH if I‘m not mistaken. After some time, things become hazy.

I would be lying if I said I was feeling fine. Actually, all the trauma from last year came back and flooded my mind. I was so depressed I completely shut down, cried and then slept for several hours.

Sometimes, I don’t know how much more of this uncertainty I can take. The ups and downs are not funny. The relief followed by utter disappointment in short spans of time is like a cruel joke. I feel like I can’t live my life. I’m tired all the time. I want to work but I can’t make it pass an hour of concentration before I feel drained. Struggling would be an understatement.

I do have short bursts of energy though and sometimes if I am excited the adrenaline helps me to appear normal for a time. After that I collapse in complete exhaustion.

I need 10-12 hours sleep a night to feel even a bit well rested. It is insane how much time I need to sleep and how much rest and breaks I need during the day. It certainly isn’t normal living and it’s extremely frustrating.

I don’t say this to discourage anyone, but to just be truthful and frank. You guys tell me I am strong all the time but I never actually feel strong. I feel weak and many times quite useless. I feel like my brain is trapped inside a body that just won’t function as it should.

I cannot be positive all the time. It wouldn’t be human to be perky, preppy and full of joy when so many challenges continue to appear in front of me.

I am not someone who is scared of blood, needles or hospitals. But there is only so much that one person can take. I feel like I have been poked, prodded, cut open, wired into, stitched up, plastered and hospitalised enough for 5 life times. I need a freaking break that lasts longer than a couple of days or months. I need at least one year that goes by without thinking of anything close to medically related things. But it does not look like this is going to happen for me.

On top of it all, it’s more money and more money and never really feeling 100% me again.

I’m extremely sad and depressed. I cannot lie. 😭

Do you know your Pain Killers?

Early this month, I went to see my gastroenterologist after not seeing one since my transplant. The few days leading up to this appointment, I was having back and abdominal pains. I usually don’t take any medicine, and rub some oils instead. But this time, the pain was quite debilitating. So, I took Panadol and realised I was running low. A few trips to different pharmacies revealed that Panadol was sold out!

Initially I was a bit shocked. Then I thought ‘oh but the hospital will surely have it’. So when I went for my doc’s apt, I stopped by the hosp pharmacy and requested for it. The pharmacist handed me a strip, but I told the pharmacist I wanted the whole box! She looked at me a little taken aback, then handed me the box of 15 strips. At the back of mind, I wondered if I was going overboard, but then I did not want to have the issue of going everywhere for Panadol for the next few months or even a year from now. So I bought the box.

Today, I am reading on the news that there is an increase of influenza-like cases, so common medication like Panadol (paracetamol) are scarce. Thank God I bought that box!

Panadol or Paracetamol is the only pain reliever I take. The excretion route of this medication is through the liver. It is the mildest form of pain medication, and as such, some people claim it does not work for them. I used to be one such person, but then when my body was detoxed and I tried again, it worked. Other pain killers fall under the NSAIDs group OR Non Steroidal Anti-Inflammatory Drugs. Some common ones are Ponstan, Volteran, Ibuprofen, Celebrex, Arcoxia, just to name a few. The list is long. These are the ‘dangerous’ ones because their excretion route is through the kidneys. They are quite commonly prescribed by GPs without warning that they can be harmful to kidneys, and many women take them monthly for PMS. Many people regardless of gender, take them for headaches and migraines.

So the next time you are prescribed a pain killer, or any medication for that matter, please ask the nurse to write the names down. Go back and read what you are taking and why. It will say quite clearly if the med falls under the NSAIDs group. Take note of short term and long term side effects. Equip yourself with this knowledge because it will help you and your family a lot in your health-care journey both now and in future. Read more about the risks of NSAIDS here

When possible, take Panadol / Paracetamol. It is still safer than any of the NSAIDs. Of course, if can tahan, then don’t take anything at all, but be reasonable about this and don’t suffer extensively. If you torture yourself, your BP will be elevated and other symptoms will emerge. Good judgement without paranoia will help you make the best decision.

Another quick note, please do not take Panadol at the slightest sign of fever. Having a fever is the body’s way of attacking foreign invaders. If you take Panadol when your fever is low and mild, you are not giving your body a chance to fight. Only take Panadol for fever when you have elevated symptoms and your temperature keeps going up.

Take care this holiday season! Crowds and people everywhere. Stay safe.

What can we expect from dialysis?

I decided to write something about the basics of dialysis and what it means for most people.

Dialysis can be a two edged sword depending on how it is viewed. It is one of those things that can be both good and bad for a person at the same time. It can offer both hope and a sense of finality about your prospects. It can be something you hold on to or something that makes you completely give up. It can be something you absolutely fear and loathe, or something that gives you strength to keep going. It can be both the thing that gives you strength and the thing that takes it away. It is no wonder that my 9 years on dialysis had wrecked my brain, my body and soul.

The explanation of all that, goes back to the start of dialysis. The explanation on why dialysis is such a contradiction of many things is because people see dialysis as a life sentence. So when you are told you need to have it done, you try to avoid it. Firstly, because you don’t understand it and secondly, because you fear what you don’t understand. The only reason it has been proposed though, is so that your life can be EXTENDED. Extended, not ended. Dialysis is a way to extend your life, for without it, at end stage renal failure, your life will come to an end soon if something is not done to prolong it.

Something very important to keep in mind from a strictly medical and scientific point of view is that nobody will tell you that you require dialysis unless you really need it. Contrary to some beliefs, doctors are not trying to trick you, lie to you, or take your hope away. They are not trying to make money out of you or force you, if they knew of any other choice or alternative. Now being in and living within asian cultures, alternative medicine is a favourite for many. I understand this, I am not against it, but most people trust alternative medicine empirically and never research what they are given. Herbal concoctions can make your kidney condition a lot worse despite claims to restore you, You owe it to yourself to learn in full about all ingredients and not swallow whole what other sinsehs or traditional herbalists say. You also need to understand medicine contraindications. Too much to go into detail, but I had to put a brief note at this point.

So how long can dialysis extend your life for? Well this depends on so many factors. One major factor is whether you have any other conditions or illnesses, and another factor would be your age. Younger patients tend to respond better and faster, and without other diseases can go on with dialysis prolonging their life for 10, 20 and even 30 years. Older patients may have a challenge with longevity because they most likely have other conditions like diabetes or heart disease. These pose a greater challenge although that is not to say that life cannot extend just as much as the next person. Diet and lifestyle and being responsible with medication regiment is another contributing factor. Researching, understanding, asking questions, keeping things factual, also help. Most importantly, do not listen or take advice from people with little or no experience in the related field. Do not listen to friends or relatives with ambiguous information, and do not take miracle supplements which will all put further strain on your kidney function. There is NO miracle supplement that will cure your end stage renal disease or reverse it. Being at end stage and needing dialysis means that your kidney is damaged by 80-90%. That means most of it is already completely damaged beyond repair or reversal as it has been going on for many many long years. Kidneys do not get damaged overnight. They deteriorate slowly over 10-15 years, sometimes more. By the time you discover how sick you really are, it is too late to do any reversal. You may feel ok except for some tiredness. That does not mean that you are ok. Being sick does not always mean lying passed out on the floor, dying. To some people the concept of being sick is very dramatic. In reality, many illnesses don’t happen like on TV. You can feel fine and not know that your body is deteriorating slowly on the inside.

So back to why dialysis is a conundrum of both good and bad – well good because it initially gives you hope to prolong your life temporarily, but bad because the longer you are on it, your body which is holding on temporarily to the limited things that a machine can do to replace kidney function, will slowly and eventually get worse. In other words, dialysis prolongs your life and slows down the process of your body deteriorating but it cannot stop that deterioration completely. It also is quite taxing and draining on the body because it is an artificial process designed to prolong life for a while. It is not designed as a cure nor can it replace kidney function completely. The artificial process of filtering toxins out, cleaning the blood and returning it to the body will cause heart palpitations, nausea and vomiting, dehydration and other side effects that occur due to a combination of the process as well as the instability of the blood results as an indicator of the ups and downs of being unwell. Since filtering of the blood is only by way of 25%, the remaining toxin build-up will cause a strain on all other remaining organs. There will also be hormonal imbalances as the body gets more confused over the slowly deteriorating conditions. Water retention and dehydration happen simultaneously as water is removed and then stored again without a proper avenue to filter it 24/7.

These physical strains will slowly begin to affect you mentally and emotionally. No matter how strong you think you are, the instability of the body and all its chemicals will slowly start to physically affect the brain function and other organ function which will then affect your emotions. You will feel confusion, brain fog, fatigue to the point of passing out. There will be times of sleeplessness, immense anxiety, panic attacks, unstable emotions coming and going. There may be times of depression and hopelessness as you sit and ponder what your fate is and why you are going through these difficult times. You will start out holding on to the good moments until you realise out of 7 days a week you only get 1 or 2 semi-ok days. The rest of the time you feel unwell. As time goes on, more unwell feelings accumulate. You start to have skin issues, digestive issues, and more.

So yes, life is prolonged, but with that also comes the slow but certain realisation that you are deteriorating slowly but surely. How long can a person hold on? This differs from person to person. I am only one person, so I can only speak for myself, but for me after almost 9 years, I experienced a lot of depression and expressed many times the desire to just say I am done and I no longer want to keep trying or keep fighting. I overcame each episode, but it got harder and harder keeping the depressive thoughts and feelings away. Mainly you feel extremely fatigued and you lose your will to live because it is so difficult to do over such a long period of time.

So how is this situation handled? It is overcome by a lot of mental effort and motivation. It is overcome by faith and believe in God. It is overcome by hope that God has a plan and purpose for everything. It is overcome by continuous support from others. But mainly, it is overcome by self-desire to simply challenge yourself to be an overcomer, and seeking to be an example of someone that thrives in difficult conditions so that others may be inspired to do the same.

I wish this could be turned into a post that gives good news, but I have to be honest and tell you the truth. Can dialysis be avoided? At ESRD, no. If you do try and avoid it, you will be taking a huge risk with the remaining 10% kidney function that isn’t enough to see you through the next few years. Most people have not made it passed two years. No other treatment can help. The only ever successful cases I have heard of had to do with a complete plant-based diet which is very hard to do, although not impossible. With tremendous discipline some people overseas have been able to hold off dialysis but we are not sure for how long. But keep in mind that you cannot reverse your condition or cure it, you can just fend off dialysis temporarily for a short time by plant-based foods because they have less toxins and as such improves the GFR ever so slightly. In other words, you trick your circumstances for a time. You are not cured. You must understand the difference. Also, your doctor will not be convinced that this is sustainable. For everyone who cannot and do not know how to make this lifestyle change or who cannot do it nor maintain it for many reasons, dialysis is your only option. Don’t ask me about plant based diets as I have not successfully tried it for this purpose, thus I cannot give any advice or share any experience. Eventually whatever the diet is, the kidneys will continue to deteriorate with time and even the 10% function will decrease to 7%….5%…. etc

So the takeaway is, dialysis in the early days is a temporary life saver. It brings hope and extends your life for some years. During these precious years of extension, the point is to seek a better treatment plan that can offer you even longer life and with extremely high quality. That treatment plan is a kidney transplant. With a transplant, your function can go back up to 70%, 80% or more depending on the donor kidney. With that much function, there is actual life to be lived. Keep in mind that prolong dialysis will bring with it thoughts of negativity and hesitancy to do anything else or move out of the years of routine. I know because it happened to me. Up to the point where even the suggestion of a transplant did not make me feel hopeful at all. In fact I will be honest that I was going through the motions of getting ready for a transplant, but after so many years on dialysis I was hesitant and afraid of change. Right up till the last moment, I had laid all my fears on the table and my doc sat and spoke to me to convince me that everything was ready, I just needed to take the leap. I thought I was doing ok. I thought I could continue to cope. I did not like the prospect of the unknown. I didn’t like the risks. I didn’t like the prospect of the medication. I was afraid my physical problems would continue to worsen. I was going through tremendous digestive challenges. Negative thinking had clouded my judgement, slowly easing its way into my thoughts for so many years, I couldn’t see pass the clouded fog of fear and uncertainty. So don’t assume that I don’t understand the complacency of being used to the routine and telling myself I was managing fine on dialysis and that I did not need another big operation to save me. I went through the mental struggle as I had already been through so many procedures and trauma. I did not want another big surgery.

BUT, the minute I opened my eyes in ICU after my surgery, in that instant, I knew all those feelings I had had were completely wrong. I felt like a new person, the brain fog lifted, my eyes looked around and saw things clearer, brighter, sharper, shinier. My body was producing 4L of urine in a bag. I was emotionally uplifted. Even with catheters and tubes in various parts of my body, I could feel instantly that something had changed for the better.

I do not have enough words to describe it. But don’t let the brain fog and clouded judgement of fear, rob you from the opportunity to feel new again. To feel like you again.

Use dialysis to get u back on your feet but don’t stay there for too long the way I did. I thought I had no option, I was resigned to the difficulties. I had learned to live with them. Don’t do what I did. Fight for a better treatment plan. Use dialysis to get u back on your feet, then fight to get yourself a new kidney. Talk to your family, educate and explain. Raise funds, find out what options are out there. Never ever give up. Aim to get off dialysis as fast as you can. Do something before you get into that clouded state of mind.

Use dialysis for the good it brings, then substitute it for something better before it has the chance to bring you down.

I don’t profess to know it all, I speak only from my own experience, research and quest for knowledge throughout my entire journey.

Western Doctors vs Natural Remedies

Many people on dialysis or those who have just been diagnosed with end stage kidney disease may want to think about transplantation. The sooner you get one, the better. Try to avoid abandoning doc’s advise and go looking for a herbal cure. Most people do this citing “natural remedies”. While some exist, not all of them work for different stages of kidney disease. In fact, some natural remedies actually make your already compromised kidneys deteriorate further. The body finds it hard to break down herbs especially in pill or capsule form as it has to do hard work to process these. Without sufficient hydration which is a common issue, the kidneys are burdened further. Also, some herbs actually cause further damage in the long term so they are not suitable.

Keep in mind that once your kidney disease has progressed, you should already be seeing a nephrologist also known as a kidney specialist. This is because they are trained specifically for this organ and know the ins and outs of it. Specialists in a specific field should not be confused as ‘just another doc’, as society likes to put it. Specialists are highly trained and skilled doctors who have done additional work to be the best in their field. They are not the same as General Practitioners that u find in clinics. In fact, if u are seeing a GP in the clinic who recognised or found out that you are showing signs of kidney disease, that GP should immediately refer you or advise you to see a nephrologist as soon as possible. Close and frequent follow up with your kidney specialist will help to keep your disease manageable and prevent it from progressing further. If your GP has not referred you, you may independently take the initiative to do this on yr own. Private hospitals do not require referrals. Government hospitals require one so ask yr GP to write you one. Do some research on which doc u wld like to see. Choosing someone close to home may be a good idea because the more convenient the location the easier it will be to go for follow ups. So choose your hospital and doc and then ask yr GP to write a referral if needed or make an appointment directly for private hospitals.

For patients who have been diagnosed with end stage renal failure, please bear in mind the doc may not use the term “end stage” because many people may freak out. So Malaysian doctors especially tend to leave out such terms when they tell you that you need to start dialysis. Doctors here also don’t specifically mention the progression of yr kidney disease in stages. I learnt this through my own reading and through communication with patients overseas. Here is a chart to help you understand stages in kidney disease:

Source:
https://www.kidney.org/atoz/content/gfr

The chart above uses something called GFR to identify the stage you are at. GFR stands for Glomeruli Filtration Rate. As our kidneys are basically filters for toxins in the blood, the GFR determines kidney function. Creatinine levels in the blood and GFR are related. I started dialysis when my creatinine was 500+ which translates to approx 7-9 GFR. As you can see from the chart above, that is already stage 5 kidney failure, also known as End Stage Renal Disease (ESRD). The term ESRD is commonly used in charts and medical reports in hospital so it’s good if you can familiarise yourself with this term and others.

Depending on what your creatinine and GFR reflects, you may need to consider your options. At stage 5 you do not have any other options. It is also usually at this stage that a doc presents dialysis as your only option. Most people refuse to accept this as their ONLY option because most people are afraid of anything medically or surgically related, especially the thought of invasive treatment involving needles, blood, and machines.

Sadly, it is at this stage that people refuse to proceed with dialysis and try and look for a natural remedy elsewhere. This is NOT a viable option. Most people who do this do not live long thereafter. Many have succumbed due to their refusal to proceed with consistent dialysis treatment. If the doc says that you have to go for dialysis three times a week, some feel that this is negotiable and they don’t comply. They decide that they will go for dialysis maybe once or twice a week as they are also seeking natural remedies outside, hoping that they can one day be off dialysis for good. Part of why this happens (and this is important) is because other people have been spreading MISINFORMATION.

So what is misinformation and why should we not be spreading it? Misinformation is when somebody who has little to no knowledge tells a patient that they a friend, an uncle, some distant relative, a colleague’s brother’s wife’s father, or somebody they know or heard of who was on dialysis for a while and later did not need it anymore. This is misinformation towards a patient with ESRD because, NOT ALL DIALYSIS PATIENTS ARE ESRD PATIENTS. There are patients in other stages of kidney disease who may be put on dialysis for a while and then can come off it. They are not the same as ESRD patients. To distinguish the difference, you must have the knowledge of BOTH patients GFR to compare. Without it, you cannot and must not spread misinformation. Please keep this in mind if you are one of these people who have previously spread misinformation, especially if you do it concurrently with recommending supplements. If you have been doing this in the past, PLEASE STOP.

You are actually responsible for giving false hope to an ESRD patient and making them think or believe that recovery is possible if they do what that other someone did or take what that other someone is taking. It puts a life threatening false idea in their minds that they may not have to be on dialysis forever. This is very dangerous information to give an ESRD patient. An ESRD stage 5 kidney failure patient needs to understand that they cannot “opt out” of dialysis, and that this medical advancement is the only thing that will keep them alive. Patients with ESRD sometimes live from 10-30 years on dialysis even though they are end stage. But ESRD patients who quit or refuse dialysis, never make it pass 1-2years typically, with many averaging only a few months. This is because without filtration of the blood, the other organs start to get burdened and the toxins prevent the body from functioning as it should. The heart and brain is severely affected along with all other major functions. This person will die a slow and agonising death. The dialysis filter is able to at least filter 25% of the blood which is what helps keep patients alive for longer if they comply with the minimum three times a week requirement. If they do it more often, it would be even better. This is because normal kidneys work 24/7 and so 25% three times a week is the bare minimum.

I hope now it is clear why opting out from dialysis at stage 5 is not a viable option and why the spread of misinformation is dangerous to ESRD patients.

If kidney disease is at stages 1-3, lifestyle changes may help slow the progress of kidney failure. Ageing naturally will cause the kidneys to deteriorate somewhat, but other reasons like excessive drinking, and incorrect diet is a quick way to go straight into stage 5 in no time at all. Diet and lifestyle for other stages of kidney disease needs to be in another post. Stage 4 is tricky and please listen to your nephrologist’s advice and follow it.

For now, suffice to say that if you or anyone you know has been diagnosed with end stage kidney failure please take note of the information here. Ask your doctor to explain very clearly what stage you are at and how many % function you have left. Ask him about GFR and what number you are at. Ask him to point it out to you and learn how to read and interpret your own blood results/medical report.

As a side note, if you parents, relatives or friends who do not like to go to the doc for check ups, a simple way to encourage people to do check ups without seeing a doc, is to ask them to go to Gribbles or Pathlab to do a blood and urine test. The lab consultants are able to do simple explanation and interpretation, but we must also learn and familiarise ourselves with the format and what the numbers mean when we get our results. This method of doing check ups at labs is a good way to encourage relatives and friends to have a yearly check without the need to actually make an appointment to see a doc, which is what a lot of people do not like to do. So just a suggestion in case this comes in handy.

Hopefully this information has been helpful. Please leave a comment if you have any questions. Otherwise, till the next post , take care and be well.

Goodbye Kian Lee

My heart is filled with grief today. Grief beyond anything I have felt in recent years. There is no way to accurately explain it, and no proper way to begin.

When I was 22, I met someone who at that time changed my life completely. This afternoon, I received news that this person only had an unknown amount of time to live as all his organs had shut down and he had been moved to palliative care. I moved around through the day in a daze and broke down several times as random memories would come into my mind. My tears continued to fall until late this evening when news of his passing was confirmed. How could this person be gone forever? It just seems too soon and too cruel.

Without me realising it, the years passed and I had gone through my illness and all the rough patches in my life with the subconscious knowledge that he would be there to back me up, like a safety net as he had always been. Although we grew apart and life took us on different paths, he never failed to make me feel assured that he was always there. For 23 years I had a true and genuine confidant and mentor.

The amount of help that he had given me is beyond anything that I could want or expect. He went out of his way for me – without any expectation of anything in return, just sincerely and with genuine concern as was his character to do so. A genuinely good person with a kind heart who desired to help people in need. He helped me through and did everything he could to make my transplant possible.

Now, my world is shaken, my resolve completely destroyed.

Memories continue to flood through my mind of places we had been and conversations we have had. He showed, taught and shared with me so many things that if not for him, I probably would have never known.

I can’t quite come to terms with the fact that we will never talk again. That he would never have the chance to give me his advice. That I would never be discouraged to do something foolish or encouraged to pursue something good for me. That his calm and commanding presence would never be there to offer a dose of logic and sanity to my sometimes unorganised, impulsive and overly emotional train of thought.

I miss him already. I am glad I had the chance to tell him how much I loved him as a person and friend. This emptiness will never be filled. 💔

Goodbye Kian Lee. You will remain forever in my heart.

While the clock still ticks….

When I was young, I was around many adults all the time. In fact, I spent so much time around adults that I ended up not enjoying the company of my peers as much as I should have. I remember having a wonderful childhood, especially playing with my neighbours and classmates, but it was the time I spent with my parents, granny, aunties and uncles that had the most influence on me. I could say that those influences are what made me who I am today. I certainly cannot claim to be a child of neglect. That, I surely was not. I was constantly surrounded by people who cared. They cared and they cared more, and they were involved in almost every change, every phase and every part of my life, unless I consciously insisted to push them out.

Ageing has been a very revealing process for me. Unlike many of the grouses I hear about fine lines, wrinkles, dehydrated skin, eye bags, weight gain and such, this process for me has involved epiphany after epiphany, so much so that I have started to wonder if I was actually dense as a child. The wise words, phrases spoken and repeated, coupled with all the memories I have, seem to make more sense now than they ever did before. I constantly wonder why I didn’t gain anything from those words and experiences at the time that they occurred. Instead, as I sit and ponder, rekindling all those scenes from the past, I have so many ‘aha’ moments and revelations. Maybe, now is the time I am meant to truly understand and appreciate them. “Much too late!”, I lament, and yet, better now than never.

Today, I am devastated. Someone I care about deeply has been diagnosed with a brain tumor. For privacy purposes, I don’t wish to reveal too much about this person, other than to say that this is someone who has been very influential in my life, who has helped me tremendously in both my work and personal life, and who has come through for me financially too. As time edges closer to the operation that is about to take place in less than 24 hours, I find myself so deeply saddened. All the ‘what ifs’ have started to appear in my mind, and I find myself weeping in agony over the possible loss of someone dear. Even if it is not death that awaits us, the thought of that ever so slight loss of that conscious person that I know and love is devastating to me. Further to that, the possible prognosis of chemotherapy and radiation is akin to the suffering my mom and aunt went through, and everyone else I know whose loved one or friend has had to go through too. It does not sit well with my soul.

I sat down to pray. To ask God to have mercy. To ask God to demonstrate his unfailing love and reveal himself to all people who go through similar types of suffering and eventual loss. I know and am fully aware that blind faith and complete faith in God is a privilege and not something that everyone is born with. That simple acceptance that God is in control, and the comfort that His spirit brings is not always available to everyone who has closed their hearts and their minds to Him. So I cried in desperation, that God will overlook the arrogance, the bitterness, the un-forgiveness that I know people hold in their hearts because of the journey that they have walked, and the suffering that came with it. I pray for peace that flows like the river. The same peace that I experience every time surgery was near for me in the past. When they placed me on the bed, and wheeled me to the OT as I looked up onto the moving ceiling. Upon arrival into the OT, I look around at the surgical team, smile as the aesthetician introduces himself and that same peace overflows and envelopes me. I pray so hard for that same calmness to arrive for everyone needing it right now, as my heart aches at the thought of the ordeal soon to befall someone I care about.

When the adults used to say “Life is short” I never fully grasped its meaning. Perhaps not until people around me have started to slowly fall ill, die and experience loss. I am fully aware that all the notions in youth of a better world, having illusions of a life that lasts long enough to fulfil every wish I had ever wished for, is simply a dream that is very far from the cruel cold reality of this world. While we go through it and try to find happiness between the tears, hope between the devastation and courage from all the despair, we know and accept that life really is short and there really isn’t enough time to do it all and see it all. Life is full of the unexpected, the unintended and the unwanted. Yet, as I always say, we have to all press on.

My comfort is to know that life on this earthly plane is temporary. My hope is that the heaven I was told about and read about is real. My true desire is to someday meat my maker, and to feel the unconditional love on a higher and deeper level so that no sadness and no fear can ever touch me, or anyone I love. I can hear the atheists ‘pfftt’ in distaste, but what can I say other than that I have lived my whole life believing in something and someone more. More than me, more than this world, more than the devastation, more than the suffering, more than the meaning of it all. I hold on to that belief and I feel it deep in my heart to be true. May we all reach it someday, and may our maker have the compassion to forgive us and accept us despite all our shortcomings and failures. May we strive to do the best that we can and be the best version of ourselves that we can be while our time on this earth still ticks, and we have that chance to still make it matter.

My new life

It’s January 2022. The year seems so strange. Once upon a time it didn’t seem like we were going to make it to 2020. But here we are 13 months have passed since.

December 2020 will always be a day to remember. I don’t think I will ever forget waking up in the ICU with so many tubes, massive back pain, and that button you see on TV where you get to press for morphine. It’s not as nice as they make it seem. Morphine gives me a headache

From that time till the end of June 2021, my life never stopped being about hospitals, tests, imaging, and biopsies. Covid threw a spanner in the works and every procedure has to have a prelude of a Covid swab test prior. It was not a big deal, though. Just an extra step and one more anxious result to wait for.

Urine analysis scares the living crap out of me. After my 1st vaccine dose I was extremely sick. Unlike other people, it started exactly a week after. I was sick like a dog and I crawled to the toilet every time I had to pee. It was agony beyond anything I had ever experienced. 8 paracetamols a day could not keep the fever at bay. I suffered for my sins, or at least that was what it felt like. My only consolation is that it also felt that after that I was maybe washed as white as snow! Well, almost! My 2nd vaccine dose almost sent me into rejection. I happened to already be in the hospital to fight off mild rejection, when it hit me again by making my creatinine go up about a 100 points every day. Eventually, things started looking very grave. I could tell my doc had all but given up. He told me to go on home leave and stop all my meds for 24hrs. Home leave is when you’re not discharged but you can go home temporarily. Funny but true…that really did happen.

I came back Mon morn ready to go for another biopsy, but lo and behold my creatinine improved, and kept improving. Hallelujah, I was out of the woods.

So that left with me July to Dec 2021 to come to terms with my new life and really start to see how things were gonna be for me. Truthfully, I spent most of the time worried about Covid, and reading the news. Finally, I allowed myseld to let loose when I reached my 1 year kidneyversary or transplant anniversary.

I won’t lie. It felt great, but short lives because very soon after I was gonna go for my booster. Woe is me…. and I did this January 6th, and I am ok. Thank you for asking, thank you for thinking of me.

This week I have a major check up.

1) To check for any after effects from the shot. Two weeks is the timeline given if anything were to suddenly appear.

2) To do a thorough check including imaging and see if there is anything abnormal or significant.

I’m tired. I don’t want to think about it. One more sleep and then off to the hospital yet again. I guess I’ll find out then. It will be a costly visit both financially and emotionally. Physically and mentally, I am already drained. But spiritually, I am upbeat.

Till then! Will write again

x

Life After A Kidney Transplant

Since I have some free time, let me share some info about kidney transplant patients and what it entails. It’s very long but I just have to share bcos I realise most people really don’t know.

A person whose kidney fails to work progresses from an early stage to end stage over time. When they reach end stage, they need either a transplant or dialysis. Dialysis in simple terms is an artificial way to clean about 25% of our blood. By comparison, a normal healthy kidney works 24/7 to filter and clean, a dialysis machine only does it 3 x a week for 4hrs. It therefore has limited cleaning abilities. In other words 75% of a person’s blood will always be toxic and this accumulates. Other than filtering blood, kidneys also regulate blood pressure and remove fluids fr the body. So ideally if u drink 2L of water yr kidney should remove what yr body does not need. In end stage kidney failure this does not happen and the water accumulates. This means it is stuck inside yr body and deposits itself in various locations – lungs, face, abdomen, legs..etc That is why fluid restriction of 500ml -1L applies otherwise u will have difficulty breathing and need emergency ICU care. It is not a joke. You start developing high BP too and need to start taking BP meds.

Why is a kidney transplant a better option?

As advanced as we are medically, the dialysis machine is doing the bare minimum to keep the person alive. Those who are not strong or have other illnesses like diabetes, heart problems etc take the added burden of not having kidney function rather hard. Their bodies struggle to cope with so many things going wrong and all the levels in the body is not balanced all the time. Diabetes in itself is one mother of a disease and causes a lot of problems that lead to many other issues including gangrene and amputation. Just imagine that + more = misery x 10.

So the best option is to have someone donate a kidney to this patient bcos there is nothing that can do the job better than a real kidney. From what I learnt through the transplant process, in order to take out a kidney and give it to somebody, the more things that matches, the better. That is not to say a transplant can’t be done if certain things don’t match, but it is that it becomes harder to make it stick. A real successful transplant is when u have very similar tissue, blood, and the list goes on. So if u use our layman’s logic, which incidentally tallies with science, the person who is most similar to you would be your parents bcos they made u. Everything about u came from them. So a parent being a donor is most desirable, then followed by a sibling then followed by aunties, uncles and cousins. The issue is that most parents may themselves be unqualified to be a donor for their own health reasons upon which u turn to siblings. However not every family member is willing and able to be a donor. But that is a separate topic altogether. Obviously it goes without saying that married partners are one of the first ones keen to donate and eventhough not related, many have sucessfully been transplanted

A kidney even when it is not yours will function so much better than a dialysis machine. As evident in my case where all my lab levels evened out immediately. I couldn’t believe it looking at my results. If my dad’s 67 yr old kidney donated to me can have such an outcome, imagine what a younger kidney can do! It is nothing short of amazing.

What’s the big deal about all these lab levels you ask?

Well the body is made up of so many things and all these different things when measured against a benchmark of a healthy person is what tells the doc whether u are well or not. When any of these levels are off that is the first indicator that something in yr body is not working as it should. Glucose, Calcium, Phosphate, Sodium, Potassium, Chloride just to name a few. We all have it and it needs to fall within the normal range.

Ok, so what happens after a kidney transplant?

A successful operation is just the beginning of a very long road ahead to a truly stable state of being. A transplant patient does not leave the hospital and immediately start living a normal life. This is a common misconception. So while I am happy to be going home, I am a very realistic person and I know I will be back again because my recovery does not end at home.

In the course of the next year, I will be coming to the hospital twice a week every week for a minimum of 1-3 months. They check my blood and urine at those visits and assess to see if meds need adjustment, if anything is off etc. If all is well the visits are cut down to once a week for a couple of months and it goes on for a year. For the entire duration that i have this kidney, I have to be on steroids and immunosurppressants. These are for life as long as I hv this kidney bcos it isn’t mine and we are trying to make it stick. Otherwise with the immune at a normal level the body will immediately reject this organ bcos it is a foreign object. In order to force the body to accept it we artificially reduce the immune function to a point where it is at a minimum just enough to prevent rejection. They must be taken at the same time every day twice a day or else u can face rejection if u are late.

So yes this means with the immune weakened, a transplant patient is in danger of all things – covid, viruses, bacteria, germs etc that normal people may be able to resist. A slight cold for u could mean rejection for me. “Ala..it’s nothing I am ok already I just still have a bit of cough or runny nose” True for u but may cause rejection for me. So everyone who cares about me keeping this kidney needs to be aware of this. If u are in the habit of wearing yr jeans for two weeks pls stay away 🤣 I cannot have any visitors or come into contact with anyone because I do not know who understands and adheres or who is sick and thinks it’s no big deal. Obviously there are also the asymptomatic covid carriers, kids who are constantly exposed to being big carriers of germs bcos they touch literally everything all the time and much more. I am not allowed to swim bcos pools are generally contaminated, not allowed to do gardening, not allowed to clean pet poop, not allowed to eat road side food where water sanitation and food prep hygiene is poor. And the list goes on… The ideal is for a year bcos it takes that long to make sure that yr body has really accepted the kidney and is stable with it. But subsequently proper care needs to continue bcos the slightest misstep can mean losing this kidney. They already warned me to expect to be back in hosp several times in this next year. I have realistic expectations but I hope for the best always.

What is rejection?

Most of the time if the immune surppressant levels are correct and the patient is compliant with taking them, then rejection is caused by infection. When u get any kind of infection it travels into yr blood stream, damages yr kidney and yr body may start to reject it. So in order to detect it early and try to reverse it, I have to go to the emergency dept whenever I am ill. I cannot self medicate and I can’t tell myself I will sleep tonight and see how tomo goes then go in the morn. I have to monitor my temp, my BP, my fluid intake and urine output daily and submit to the nurse when I come for my twice weekly check ups too. If I have a fever it’s straight ro emergency dept..if i have diarrhea, same. And they told me to pack a bag every time bcos most likely i hv to be admitted so they can administer neccessary drugs thru IV and try to reverse or prevent rejection.

Yes, it’s not easy and there is no instant going back to live normally unfortunately. Yet still to be able to live with someone else’s kidney is still a modern miracle, and I am nothing but grateful. ❤

Kidney Transplant Journey

In order to break my long winded story telling style that seems to go on forever, I am going to try and make this bullet or point form. Wish me luck!

• Dec 11 – Admitted to hospital. Fasting started at 2am. No longer nervous, just calm and at peace.
• Dec 12 – Woke up about 6.30am, bathed, changed, by 8.30am was ready in hospital gown and nothing else. Dad was wheeled into surgery at 8.30am. Had a chance to say goodbye as he went.
• 9.30am – Was wheeled to the Operating Theatre and there I waited but not for long because as soon as dad’s part was done, they would send me in to receive the new bean.

(Two main surgeons involved – Dr Murali did my dad’s surgery, then he moved on to help Dr Koh do mine. Dr Sekar was my anesthesiologist)

• I was wheeled into the OT, saw Dr Koh and Dr Sekar was very calming. I had been in several OTs before and this was not at all scary. I felt good and relaxed. They inserted an IV line, put the gas mask on me & soon I was off to sleep. This is always the nice part as you drift to blissful slumber.
• 2.30-3pm – Woke up in the ICU. I did not have any bad nausea as I did before, probably because my new bean was already working to clear the system of all the drugs. I felt good! I realised I had several tubes – Urinary Catheter (urrgh), IV line, Artline (for constant BP monitoring), Jugular line for medicine and more, drainage tube near the wound site. Honestly, the ICU was what I was dreading the worse, but it turned out to be ok and most of the nurses there so attentive and good. The first two was a pain and I promptly told them off to speak nicely and have a more pleasant tone. I think they got scared bcos they were never assigned to me again haha… The rest were simply exceptional. As for my new bean, it was churning out about 4L of fluids already and doctors were very happy with the progress.
• The hardest part about ICU was my back pain. I felt the mattresses were too soft and this continued in the ward. I had to eventually bring my own cushion from home to support my back. But the 4 days in ICU I suffered with back pain. They wipe you with babywipes and another wet shower wipe, let you gargle Oradex, they turn you over, lift you up…I mean they do everything for you. Thank God I had no desire to poop. That would have been horrific.
• Mon, Dec 14 – I was supposed to return to the ward but I had an incident with my heart. Something called Artrial Fibrilation. So I was given meds, saw the heart doc (Dr Yap) and they kept me another night for monitoring. Dr Yap is really good. If you are looking for a good heart doctor, please seek him out. https://princecourt.com/?doctor=dr-yap-swee-hien
• Tues, Dec 15 – I was finally cleared to return to the ward by Professor Tan Si Yen, my primary nephrologist. Dr Goh who is a urologist was also following up with me and he comes with a wealth of info and advise covering top to bottom. Even how often to change towels, bedsheets and how to keep top notch hygiene after transplant since my immune will be surpressed. Such a kind and caring man. He also removed my drainage tube. IV line on my hand also removed bcos they were using the one at the neck.
• Evening – Back in the ward. Saw my dad as he was cleared to go back to ward much earlier on. Donors are normal people so they recover fast and easy, plus they have no medicine to take as they are in essence not sick. They only have to heal from the wound and then they are on their way, normal as the day they walked in. My dad was released to go back Tues but he stayed till Wed and then he went back.
• Wed, Dec 16 – Ward life began. I could not eat much in ICU, but my appetite started to come back on this day. The menu was designed for renal patients and I tried almost everything that came with rice. Not much of a western food person, so I always ordered rice. Food portions were generous. Some sample pics attached:

My favorite breakfast – omellete with mushroom and cheese

Another favourite but this is for a main meal – lunch/dinner (ikan Singgang)

Came home and tried to make Ikan Singgang. Ok, can be improved. I will keep trying.

• Thurs- Fri, Dec 17-18 – Life in the ward continues. Everyday they take my BP around 5.30am, take my blood around 6am. I lie in a little more then wake up when breakfast comes at about 7.30am. Have my breakfast, go wash up, then I have the whole morning to do whatever I like. Doc comes and sees me between 9.30-10.30am for daily updates and follow up. Then again around 4pm with whatever latest updates there are from the reports. He adjusts the medication daily, esp the ones they have to put through IV. My creatinine hovers from 100-130. Finally, urinary catheter removed!!! YAY
• Sat, Dec 19 – Creatinine dropped to 94 and doc as very happy to send me home. I went back the next day with a scheduled visit on the coming Thurs and possible biopsy.
• Sun, Dec 20 – Home 🙂
• Mon – Wed, Dec 21-23 – I coped well at home. As the days went by I could move a bit more. Initially couldn’t bend my right leg much as the pain would surge to wound on my right side as well. Received some lovely gifts from the time I was in hosp until I got out from Dila & Reen, Brenda & family, Mae,Yen & family… All very lovely just to cheer me up 🙂
• Thurs, Dec 24 – Christmas eve but did not feel like that to me. I did my tests in the nephro clinic and my creatinine had gone up so doc requested I do the biopsy. I had to be readmitted and was in hospital for 4 days. It wasn’t so bad, but more days like this in the earlier part of post transplant is apparantly normal as the first few months are the most crucial where your body tries to fight the kidney and you desperately try to keep it.
• Fri-Mon, Dec 25-28 – Accustomed to ward life already. They were so kind to give me back my old room. It’s at the end so it is quieter. Luckily for me I am quite the introvert and have no issues being alone with my own company. I have a routine and everyday I do exactly the same things. I sleep early at night and wake early in the morning. Everything feels better with a set routine.

So that brings me up to date, I have been home the last 3 days and also coping well. Trying to drink a lot of water and I do take my meds on time. I am due for another check up tomo, and doc already said I may need another biopsy and hosp stay if the creatinine does not go down to 100 at least. I hope and pray I don’t have too many more hospital stays because they are very costly.

So as I mentioned, the next few months are crucial for me. I really need to stay away from infections that can come from environment and other people’s germs no matter how minor, and I change my towels and beddings very often as per Dr Goh’s advice too. I never miss my meds either.

BP meds, steroids, two types of immunosurpressants, and many others. The meds are very costly and at present just the two immunosurpressants alone cost about RM4k+ for a month’s supply. Eventually when the dose is settled, I will be able to apply for gov aid and socso aid. Hopefully that will cover most of it and the rest I have to buy myself.

Ok that’s it in a nutshell. I remain in good spirits, and I hope to get to a stable enough condition soon so that I can return to being a useful member of society in every which way possible. They say it takes a year. We shall see won’t we? Odds have been defied before, and they can be, again.

xoxo

You can’t handle the truth :-/

When I was researching details about transplants, especially here in Malaysia, I did not find much info or personal experience from others. Perhaps people don’t write, or perhaps they are just too caught up with things to sit and document each step. But you know me, I love to write. I met a girl who also went for a transplant a year ago. Hers was donated by her husband and she and he both, did a good job documenting their journey. It helped me a lot, so I hope that what I write here in this blog will help someone else too. I will try to be as detailed as possible. Not just for other transplant patients, or those considering it, but also for the vast population who seem quite in the dark about the whole thing. Many people have the misconception that a transplant is a cure and that automatically like magic you will go back to being brand new again and do all the things you used to like a normal person. The answer to whether this expectation is real or not is both true and false. Yes many people go on to live seemingly normal lives, but it isn’t automatic, it doesn’t always happen and they are fighting battles they rarely tell others about. In my opinion, and from personal experience, the reason why sick people don’t talk much about health matters to healthy people is mainly because healthy people can’t accept what you are about to tell them. Healthy people tend to live in a reality that is wholly their own, most of the time preferring to run away from reality and truth. They talk about positive thinking because they so desperately want to believe that nothing will ever go wrong for themselves or their loved ones. They live carelessly everyday, taking everything for granted, from the food they eat to the pleasures they indulge in. They drink, they smoke, they frolic, they flirt, they are careless and carefree about almost every thing they touch and come into contact with. I know this sounds like a very judge-y statement, but believe you me that it comes not from a place of judgement, but rather from a place of quiet contemplation and observation. Yet there is little to be done about it, because lessons are learnt best the hard way, and there is nothing I have learnt that I can possibly share with anyone else who has not had the chance to go through it themselves.

When you talk about depression for example, or mental health issues. The advice is to always reach out, never carry those burdens alone. But it’s quite impossible to reach out to a mass group of people who are so out of touch with the realities of life that even the smallest problem or inconvenient is somewhat shocking. Example of a shocked response:

You: I went to the doctor yesterday.

Friend: OMG babe, what happened? Are you alright?

This is a shocked and overly expressed and completely unnecessary overly concerned response which will make you change your mind about sharing any more. Sometimes you test the waters and share a bit more and you watch as their eyes bulge out and they cringe at descriptions of needles, blood, bandages even. You realise, ok this person can’t handle it. So how to tell more? How to share burdens? How to include people in your journey or your life when they cringe at the very thought of going to hospital? It’s impossible, and it comes from being ignorant and out of touch with the real world.

So, back to my main point. I am going to lay it all out there. If you can’t take it, that’s on you, not me. This is my reality and it has been for a very long time. If you care, you read and you walk and feel this journey with me. But if you choose to stay in your bubble, you don’t have to read or know or care about anything others go through, until of course it happens to you. And then, you can always come back on here and find the information and hopefully it will be of use to you someday.

Details of transplant in next post. This one as usual has gone on too long already😄

Dec 11 – Last Post before Surgery

Dec 8 – Crop It

In a mad dash I cut my hair short. Ready for surgery now!

Thank you and Goodbye PHKL Dialysis

Gift from Hafiz

Gift from the Dialysis Staff & Nurses

Transplant Date Set for Dec 12, 2020

In the beginning of this month (Dec, 2020), I decided with my doctor to have the transplant done on Dec 12th. It was not an easy decision for me simply because I was recovering from the Aneurysm removal and I had plenty of tummy troubles that made me feel unready. However, with the knowledge that a lot of the tummy troubles sometimes disappear with a new kidney bean cleansing and resetting my system, I decided to go for it.

My doctor decided that I should start one of the Immunosurppressants one week before surgery. It is called Prograf (Tacrolimus) at a dose of 2.5mg. I posted this one Facebook:

Nov 25 – Looking Back

Recently, I had to go through a procedure that they told me I needed otherwise I would die. It sounds so morbid but that is exactly what I was told – that I had an aneurysm in my spleen that could rupture anytime and I would be dead within minutes. No time to go to the hospital. They discovered it during the final CT scan I did for my transplant process to check if everything was ok to proceed. Many of my ‘’miracles” are discovered this way. Always by accident. I was told that hour long meetings were held by professors and surgeons to discuss how to proceed. The vascular surgeon here also consulted his brother’s Interventional Radiology team in Canada for advise. Apparently, this was a very rare case here. It is called Splenic Artery Aneurysm – if u want to look it up. Very quickly, the procedure was scheduled and it entailed putting a platinum coil to block off the blood flow to the aneurysm and you can see a similar method here:

A thin wire goes in through the groin, up the spine and into the vein. Amazing. There is no big wound but the bruises and internal bleeding looked pretty bad. This surgery in the end cost almost 40k and this set me back in terms of my transplant fund. But what choice did I have? They told me I needed this otherwise I would die. In fact, in my follow up consult the surgeon very honestly told me that the surgery took longer than anticipated because something went wrong during the procedure and in correcting it they took longer to finish.

All I can do is thank God and be grateful that despite the situation looking like a mountain I cannot climb, He brought me through it. No doubt slightly battered and traumatised, but I live to see another day. I still need help with the transplant fund and at the same time I am tired out from dialysis, I am still recovering from my procedure and I still have so many symptoms I can’t even begin to list down. Overwhelmed does not even come close to describing how I feel. I am so broken physically, tired mentally, but spiritually I am still hopeful that there is a light beyond this long and dark tunnel. The sleepless nights, the anxiety, the intense pain, it has got to end some time and I try to find joy in small things. A flower, a garden, clear skies, birds singing. I take a walk with my pets, even my cats know how to take a walk with me and that thrills and tickles me. Joy in small things.

I don’t need to find excitement or chase some bigger meaning of happiness. I’m grateful if I can just wake up without pain and have a good day. At this point, it’s just my faith and trust in God that sees me through. There’s always a problem, but after that is a solution. Always a complication, but after that a resolution. There’s never enough money, but God always sends people to help me. How can I ever say that I am not blessed? I am blessed beyond measure, so blessed sometimes I can’t even believe it. That I have a chance at all these life saving procedures and that I wake up to see another day when my life could have ended many years ago. I cry all the time, the pain and tears are very real, but so are the blessings. So in whatever you are going through, do not lose hope. Continue to put yr faith and trust in God. No human can ever understand, but God knows. God sees. God Heals.

Slow Recovery Nov 2020

Recovery has been slow. Bruising is still quite bad and I still feel very sore. For such a small wound, the bruising is so substantial. I wish I can show but the placement is near the groin area. I also have significant bloating that is uncomfortable. Am trying to see past all this and find happiness in other small things. My oils and hot water bottle is my faithful companion for now.

In and Out of Hospital

Nov 6: Finally, had the aneurysm coiled up. They use a platinum coil. Small but permanent. They went into laproscopically through the groin. There was a lot of bruising and some complications during surgery, but overall they got it done. I was out the next day and on my way to recovery. Trying to keep focused on the transplant.

When they found an Aneurysm!

They found a Splenic Arterial Aneurysm and needed to fix it

It had to be done and cost an additional RM39k out of my transplant fund. But what alternative did I have? This anuerysm could have killed me 😦

Facebook post from Oct 22, 2020

Kidney Transplant Plans & Donation

To follow up my post in Aug 2020, as usual so much has happened. I updated several posts on FB but somehow it does not link anymore to WordPress and vice versa. As such, I wll be doing some copying and pasting to update here. Some are screenshots and others are just straight forward C+P.

This is a FB C+P from a post dated Sept 29, 2020:

This post is long but about my upcoming KIDNEY TRANSPLANT.

Dear friends, First of all I want to say that despite the tumultuous last few years, I feel I am surrounded by amazing people. This illness has given me the opportunity to see the great potential in people and the immense compassion and generosity displayed by mankind. From old school friends, to old office mates, lost acquaintances near and far, including new friendships fostered. Just love from all kinds of people, even those I had never met before. I feel consistently humbled and so grateful.

As I embark on a new challenge ahead, I find myself at yet another crossroad, as I contemplate the fate before me.

Due to the number of years on dialysis, my situation is becoming increasingly worrying. As the body deteriorates slowly, my heart and other vital organs are at risk. Recent blood results show higher risks and because I don’t respond well to certain meds, certain risk factors are not well controlled. Upon consulting a doctor and professor, I was advised to consider a kidney transplant soon. They want me to do this while I still can, while I am still young and while there’s still time before any other organ fails. Once I develop issues with my heart, my opportunity to do this will be gone forever.

As all of you know, I have been on dialysis for 8 years, and have had many complications year in and year out. As time progresses, the body wears out and my physical condition deteriorates. Looking at my latest results, they are recommending a transplant as early as end Oct/early Nov. The urgency is mainly due to my condition, as well as the health of the donor that could change anytime as time progresses.

My 67 year old dad is looking like the only viable donor option right now. He is in good health and has the same blood type as me. The doctor has assured us that a donor is able to live a normal, healthy life with one kidney. (In fact they transplanted a kidney from a 79 yr old lady who gave it to her daughter. The lady is now 86 and healthy) With this assurance, we feel a little more confident to proceed. However the issue now is the funds that are needed within a short period of time.

The total cost of testing is approx RM30k and the tests are ongoing up until the time of the operation. The operation itself for both donor and recipient including post-op is approx RM150-170k. This is done legally in Malaysia so that some of the post op medication can be covered by gov and Socso. Otherwise it will be too expensive to manage all of the meds later on as medication to suppress the immune is for life. Once the organ is transplanted, I will have to be on immunosuppressants for as long as I live, to ensure the body does not reject the new organ.

My dad and I have gone for the first preliminary tests and results are promising. We have the same blood type which makes things easier and parent-child organ transplants typically have lower rejection rates. Some of the tests are sent to Spore for crossmatching and antibodi testing. If we are to go ahead, things will move very fast fromhere on as doc wants to get it done before complications arise that may hinder it from happening and taking my chance away permanently. Putting all the complicated medical stuff aside, the bottom line is the availability of funds. While i was aware of the op costs before, all monetary assistance I had thus far have been going towards regular dialysis, adhoc complications and meds, with nothing to spare for the op fund.

A transplant is not a cure, but it buys me another 10-20yrs (hopefully) and quality of life is supposed to improve significantly. It is a long road ahead and this is just the first bump in the road.

So this is my appeal to you, if you would like to be a part of this life saving operation, and help me to get through this challenging time, I would be eternally grateful. Some friends are seeking assistance from my old office colleagues who have been a great help to me, and now am reaching out to my FB friends as well.

All of you have been so kind to me in the past, and keeping you all abreast of my situation makes me feel that there are people out there thinking of me, praying for me and cheering me on. With your help, I will get through this.

My bank account details:

Maybank 114179029140

CIMB 7006195179

Corina Tan

Paypal for overseas donations: https://paypal.me/corinatan

If you have any questions, please DM me directly or email corinatan@gmail.com I will only be responding to personal questions and other details privately. If you want to forward a link to others, this is a blogpost that has all the relevant info: https://kidneyfailureandme.wordpress.com

Thank you in advance for all the love.Yours truly, Corina

Third Time’s A Charm

It’s been almost a year that I have not penned anything down in this blog. I checked the last entry and it was in Sept 2019. October 2019 was largely uneventful until the last week when my AVF (Arterial Venus Fistula) started hurting. The AVF is the dialysis access that is artificially created when u first start dialysis to increase blood flow and create an access that is usable by the machine to perform dialysis. Without this artificial access created, dialysis is not possible.

The operation back in April 2012 took about 30-40 mins and was done under local anesthesia. I remember looking up at the ceiling of the OT and thinking that it looked so much like a scene from Grey’s Anatomy. At that time it costs approx 4-5k (I cannot recall the exact amount) and was done by Vascular Surgeon, Dr Lee Soon Khai. Dr Lee is a very approachable doctor, easy to talk to and discuss things with and he put my mind at ease.

Anyway, as the pain surged through my hand I thought back to the very beginning of how the AVF was first created and how the years of dialysis had caused the vein to grow. Two big bulges emerged as a result pf more than 7 years of cannulation. The machine’s pumping and pressure action resulted in the veins growing to an aneurysm. They were unsightly but they did not hurt. So on the day it started hurting (Sat) I knew something was amiss.

On my next dialysis (Monday), they could not hear a strong thrill. I could not proceed with dialysis and waited to see Dr Lee again for further advise. After a few hours, Dr Lee said that he could not find any other suitable access to create another AVF and hopes to repair the current one was slim to none due to the size of the aneurysms. The balloon that they usually use to remove clots fr veins would be too small to remove all the clots in the aneurysms which makes the effort futile. He suggested a permanent catheter for dialysis access. Since he no longer does this procedure, he informed me, he referred me to his colleague Dr Saravana, also a vascular surgeon.

Dr Saravana scanned my arms again and he suggested a procedure to insert a graft – an artificial tube that will be used in place of a vein. Basically they insert this tube under yr skin, connect it to your veins and poke it to access yr blood flow. it is usually done for patients with poor quality veins like spider veins in diabetics patients. In my case bcos I don’t have any suitable available veins. He felt he could use this technique instead. But it requires two operations, one to insert and another lift it up closer to the surface so that it can be used bcos if it was deep in the needles for dialysis won’t be able to reach it.

Anyway, they warded me that Mon night itself and scheduled an emergency operation for the insertion of the permanent catheter first. The permanent catheter is a tube like catheter usually placed on yr chest. I requested that I be sedated because of all the traumatic experiences in the past. At first he was hesitant but later I told him I don’t think I can keep still bcos of my anxiety, so he relented. I woke up feeling like someone had hammered my chest. Every breath was a struggle, like something was pressing my chest down. I was wrapped up like a pinata and I felt so drained from everything. The next morn I was wheeled to dialysis. That was my first experience dialyzing using the perm cath as they so endearingly call it. I will try to attach pics so u know what it looks like.

The early days of having this tube stuck to my chest was nothing short of agonizing, I had trouble coordinating myself – how to wash up, bathe, wash my hair. I had limited range of motion to one arm and the other was overworked and painful. The clotted AVF was still hurting me. I will write more about the permanent catheter as that deserves a seperate detailed post in itself. I had so many questions about it but nowhere to turn so I will write about it now so others who may have questions can refer it it later. But for now I continue the rest of my story…

(One of the least scary pics of the Permanent Catheter. This plaster has a special antibacterial gel-like substance that helps to prevent infection and the transparent window helps medical care staff see if the access is infected)

The following day (Tues), I spoke to a medical staff about my case and was directed to get a third opinion from another vascular surgeon. i was told this surgeon is able to do what most surgeons are unable to. Sounded too good to be true, but what had I got to lose? No one else was giving me any other option, so without other options the only one left was to continue using the perm cath and then go ahead with the graft,

I found the contact and made an apt to see Dr KH Tan at CVSKL on that same week Thurs. at CVS they also scanned my arms but even during the ultrasound they already gave me some hopeful news. Not wanting to get my hopes up too much, I waited to hear fr the doctor. When it was time to see him, he just wanted to know why I wasn’t transplanted yet as I am still young, he said. Then I found out later he used to perform transplant surgeries prior, so his experience led him to ask me questions relating to getting a transplant and he urged me to try and get the money to do it asap. But most importantly is that he said he can create a new AVF for me. I was dumbfounded bcos I was told by two surgeons that it’s not possible to do. But Dr Tan said it was a piece of cake. I asked for sedation, again. The traumatised chicken that I am and after much hesitation, he agreed. That same week Sat, I went back in as a day care patient and within just a few hours I had my new AVF done without any hiccups at all. No need for a graft, no need to use the perm cath forever. New found hope. Dr KH Tan gave me something no amount of money can ever buy – more time. I am forever grateful.

After that he mentioned that we had to do another operation to remove the aneurysms of the old AVF and cut off the flow. He said this was the more serious and dangerous operation bcos of he makes a mistake, the flow for the whole hand will be cut off and I won’t be able to use the new AVF he created as well. But when I asked him if he was confident he could do it, he said that he was. Do note that previous doctors told me to just leave the aneurysms alone, but Dr Tan said it won’t be a good idea to leave them that way. I trusted him and his abilites and by that time it was Jan and I went in for this other major op. This time on GA.

(Before the operation to remove the aneurysms of the AVF that got clotted. The second picture is a picture of it when they put the needles in during dialysis. This was before it clotted. Once it clotted badly, it could not be used. )

(After the op to)

Oh I also would like to mention that both procedures done at CVS, my anesthesiologist was Dr Shahril Azlan Ariffin. I would request for him in future if I could as I found him to be very thorough and understanding of my situation and sensitivity to many drugs. i thought it made a huge difference in terms of how I felt when I woke up. Plus the Q&A session before the op is usually done by him and he also made me feel very confident about the whole thing.

I had a really positive experience at CVSKL considering that I was riddled with anxiety and so much uncertainty, plus I was in pain, and yet they made me feel like nothing was too much trouble, and the hospital is nice, new and clean. I was also partial to the light turquoise blue curtains, but in the grand scheme of things, such a small detail doesn’t seem very significant, however in the hours before and after procedures, I was delighted to be looking at a pleasant color besides the awful pink or beige that most hospitals choose as their fabric palette.

While I am highlighting the bigger and more significant moments, there were smaller events in between that required trips to the ER, and emergency cutting and pressing out blood, all while conscious, and other things I shall not go into, bcos it’s so tiring to explain. And in between all this I was also battling C.Difficile which is a gram positive bacterial infection of the gut that u can get after taking antibiotics.

The problems were just mounting and every little additional thing was just another load I could not carry.

The MCO actually came at a good time for me bcos while the world was put on hold, this has given me a chance to breathe and catch up. I felt calm and at peace that things became so quiet. The lack of movement and activity somehow gave me a chance to also slow down. The hospital became do quiet and this made moving around in the hospital less stressful bcos there was no crowd to do battle with. No running and screaming children to avoid them bumping into my injured hand and burly inconsiderate adults standing blocking pathways, talking loudly, using speaker phones and turning a classy lobby into a marketplace. It was bliss to have all that chaos disappear for a few months. It has been the most peaceful I have felt in a long time.

So here we are now, Aug 2020 is here which means a year ago I never knew all those things which followed would happen. i never expected my AVF to clot, and my journey to get a new one done led me to a brilliant surgeon.

I hope I get to see Dr Tan again some day. He really changed my life. I will send him some cookies soon.

On by the by, one positive thing that happened during this entire episode was as soon as my hand regained function and all the ops were over, I started honing my baking skills which prior to all this was nonexistent. i am happy to say I make pretty good dark choc cookies and have received good reviews so I started selling them. Will post more about the cookies in a seperate post. But u can find them on Instagram as @cookiecravingsinc

Learning Generosity

Written: Jan, 2020

Are people posting New Year’s resolutions again? Well as usual I don’t have any. One year flows to the next with the same rhythm as it always has. Not much change, and no difference. So instead of resolutions, I think it’s good to look back and learn from the lessons I have been taught through circumstances that happened to me. One big lesson is learning to be grateful despite difficult circumstances. Another lesson is to always be generous and compassionate, and this lesson I have been shown and taught my whole life primarily by my parents.

When I was young, I was always at loggerheads with my parents. My father was a very strict and disciplined man, and my mother equally strict when it came to having an orderly and hygienic household. In my home, everything has its place. We would be told off when we put our things in the wrong place or leave stuff lying around. Eating has to be done in the dining, not in front of the TV, and crumbs must be picked up immediately. Kitchen has to be clean, no oily floors, never ever dishes bertakung in the sink. You eat, you wash and put back immediately. Clothes are washed, dried and folded on a daily basis. Beds are made when u wake up, pillows fluffed, blanket folded…that sort of thing, if u remove yr clothes you need to hang them up nicely. One day my jeans fell on the floor and I received a scolding for not appreciating things and showing respect towards my belongings. They would also scold me for borrowing things, saying that I should never make a habit of that. My parents told me all these little things may seem like insignificant issues now, but they form a person’s character and make you who you are in future. And when u grow up and go and live in people’s house, nobody will talk bad about u and say you have been badly brought up. Of course, as a young person, I felt all these niggly rules were so over the top and troublesome. Rolling my eyes on the quiet and always feeling like they were just so fussy and particular instead of being more laid back and cool.

Years passed, hard lessons learnt. I walked, I ran, I fell, I got up, and I learnt, slowly but surely that everything they taught me was true. I was shocked when I saw how other people behaved, their hygiene practices, their homes, their daily habits, the way they raise kids, the lack of discipline, the spoiling, the dirty dishes stacked up in the sinks with procrastination being the mantra. And slowly, I began to realise and appreciate the simple everyday tips to living that my parents tried to pass down to me.

As I grew and matured, I started to understand my mom and dad better. But time was not on my side, and before I could truly make all amends necessary and work on fostering a better relationship with my mother, she died in 2012. I am just grateful that at that point, we had a good relationship, but I was sad that we didn’t have the time to make it even better because by then I wanted to say was, “Mommy, I know and understand what you have been trying to tell me. I know and understand how you feel and I am sorry if I ever let u down. I love you” Tapi, tak sempat nak cakap semua tu, I just hope she can see me now and she knows I feel that everyday.

As for my dad, what can I say? He is the best father to me and the best example of a husband and father that I have come across in my generation of observing men. When I look at so many fathers who are always busy, wrapped up in their own world, their lives, their sports, their colleagues, burying their head in their newspapers, hobbies, without a glance at their wives, children and home, I am so grateful that I have a dad who comes to my room to ask me if I am ok. He prioritised his wife always and made time for her at every opportunity, He was a father who is even able to help me buy feminine products for my time of the month. He never shies away from responsibility and goes beyond just working for the family, to share with me daily life stories that will teach me valuable lessons I can use in my own life.

They (my parents) never made me feel like I owe then anything, instead they always said that I should focus on myself – being independent and self reliant and never ever feeling obligated to them in any way, whether to give them money or to come back home to Msia when I was away. They always said I should live my life as freely as possible without the burden of familial obligations. I didn’t think it was a big deal then, but now when I look at other people’s lives I understand, not all parents are that way, and I am so grateful I had parents who loved me so much they were willing to let me go. Unconditional love? I learned it at home. Sacrifice? Also learned it at home.

But by far the greatest lesson my mom and dad taught me was a lesson I learned through example. My parents were givers. They were never rich, and they didn’t have much. But from the time I was small until I grew up, I recall numerous occasions where all they did was give to others. If my mother bought a new dress (and it takes her ages to find one she likes that fit) and my aunty came over and commented that the dress was nice, my mom would ask her to take it. Same with shoes or bags. I watched as they gave money, bought food, chauffeured people around. Helped those going thru bereavement, get paperwork done, gov red tape to claim inheritance and so on. They are the ones relatives called when someone was going through relationship crisis, marriage problems, children running away, and much more. They will drive to other states to be there for people. But I also know when they needed help, they never told anyone, not wanting to burden others and always suffering quietly and handling it themselves. The lesson I learnt was, you don’t need to be rich to be generous. You don’t need to have happiness in your own life, to be compassionate. Generosity and kindness need not only come fr those who have in abundance. It comes from anyone who has a heart big enough to love others, that they recognise needs and they try to help meet them. Whenever my mom or dad ajak each other to go somewhere, more often than not it was not to go on second honeymoon, first honeymoon pun tak sempat, and not to go and enjoy frivolously, but whenever I dengar them talking and ajak-ing each other to go somewhere, it was always accompanied by a story of someone’s situation and how can they go and bring joy to that person in some way. ‘Jom pergi visit Aunty xxx, she’s alone now her husband died’ or ‘Let’s visit Mr&Mrs xxx, they live by themselves and hardly get to come out’ or ‘Come we go and take xx and yy out to makan, pity them they hardly get to go anywhere.’ And similar such conversations. I heard and I thought nothing of it back then. But now, those words are everything to me. To know that I come from people who had so very little, but who gave so much of themselves, their time and whatever they had to others, is a blessing no amount of money can ever buy.

And in some strange roundabout way, I think that this is the reason why now that I am in need, the universe brings people to help me instead. This is the legacy Tan & Carole left me. Their sincere hearts and their beautiful, loving, giving, generous souls. I hope it goes on living inside me for as long as my body has breath. And while my mom is gone, my dad is still here and I hope I will have more time to tell him I have had the best life because I have had the best parents that taught me and showed me the true value of what it means to live a life in service to others.

No resolutions. Just immense gratitude – for all the people who continue to show me, just like my parents, that love, compassion, generosity and sincerity very often knows no bounds. These people are priceless and I treasure them more than they know. You all know who you are. Thank you 🙏🏼

TMJ/TMD

I have not been able to write about this as I wanted to wait till I felt much better to accurately provide useful information about this condition.  So yes, the good news is I feel much better, but in order to accurately depict what this was all about, we have to go back to a couple of months ago on that fateful morning when I yawned and my life was changed forever. Ok, that sounds too dramatic, but….it really was a big deal to me.  I yawned and turned to the side, and I heard and felt a click at the joint in my jaw, and after that immense pain and discomfort. I felt the alignment of my entire jaw was out of place. Previously, my jaw has clicked out and then clicked back in immediately, but this time, it wasn’t able to self correct. I was definitely freaking out. What made it worse is that it was Sunday, and my regular dentist is closed on Sundays.  I googled several dentists opened on Sunday and made my way to one in PJ New Town. To cut a long story short, the doctor there was not able to help me. I was terrified, in pain, and worried that my life would never be the same again. I was not able to close my mouth and bite or chew properly because of the misalignment! Woe is me!

The next couple of days was filled with more tears and despair. I was disraught, I will not lie. I decided to go to UMSC’s Dental Hospital as they have a department called Oral & Maxillofacial Surgery.  This was supposed to be the department that deals with things like a dislocated jaw.  I felt that this was what I had and I needed someone to ‘push’ my jaw back into its original position. At this hospital, I was attended to by a medical student (probably a doctor but still in the learning phase) and was asked a host of questions using a questionare that was very repetitive.  I understand that this is a teaching hospital, and under any other circumstance, I would have been happy to be part of the process of teaching and learning, but because I was partly paralised with fear, and terrorised with pain, I just wanted my problem solved ASAP, and after several hours of questions, several measurements done to how much I could open my mouth, migraine looming over the horizon, I just couldn’t take it anymore. I stayed through the entire process only to be told that they have a specialist panel that meets once a month and if I could come the next time they meet, perhaps they can assess my situation then. In other words, no quick solution given, no actual explanation as to what was happening to me, a ton of guesswork, and I went home feeling less hopeful then when I arrived.  Frustrated and extremely agitated, I cried and cried and then attempted to chew with the limited jaw movement, feeling the pain with every move.  Crying continued for several days, until I decided I wasn’t going to wait anymore and I couldn’t wait for the specialist panel to convene. I went to Pantai’s ENT after my nephrologist called to ask the doc to see me immediately after dialysis to assess if any emergency steps need to be taken. The ENT saw me and called another ENT and together they saw me and discussed what to do. They tried to adjust my jaw, but it was not budging.  They said if I continued to complain of pain, the only way to adjust is to do it under anesthesia.  They said in most cases the issue resolves itself, so they asked me to wait for 5 days and see. I called my regular dentist, managed to get an appointment for the following week, tolerated several more days of discomfort and then I went for my appointment.

The minute I explained what had happened, he knew what I was talking about, and he proceeded to explain to me what the condition was, and the steps we could take to get me better. The relief I felt, made me want to cry somemore! I wish I had come to see him sooner, but I couldn’t get an appointment earlier. He said he understood how frightened I must have felt and all I needed was someone to explain what this was and what to expect moving forward. In lay man’s terms, it is like an injury that takes time to heal.  He did an xray and showed me that no bone was broken, and that my jaw was not dislocated, although there was some movement seen. The condition is called TMD – Temporomandibular Joint Disorder. Here is a visual:

So as seen above, this is the most constantly used joint in our entire body, and when it gets tired, weak or injured, you will feel pain and discomfort. According to my xray, he could see some movement to the TMJ, but he said we didn’t need to manually push it.  He said it is the kind of injury that needs time to heal, and in the meantime, in order to ensure the bite is comfortable, they will make a splint that I need to wear at night every day. After a week, this splint was ready, so I collected it, and started using it. Almost instantaneously, there was improvement, both in the alignment as well as the pain. I was relieved and hopeful.  During the next month, I would feel pain when I yawned.  Now, 3 months down the line, and I can barely feel the injury. I can eat normally, and I no longer feel pain.

I am relieved that I have a clever dentist that is knowledgable and able to explain things to me clearly, plus give me the assurance I needed to feel and be better.

I have never heard of TMD before, but it is apparantly more common than I knew. If you or anyone you know complains of pain or discomfort in this region of the body, I hope that this information will be useful. Just know that the disorder has a positive prognosis and it will take time, but you will get better. Patience is truly a virtue in this case.

All I can say is, be careful when yawning!

My dentist: 

Dr Leslie Yong

Yong Dental Surgery

20B Jalan SS21/39, Damansara Utama, 47400 PJ

Tel: 03-77292286

The Person I Am Meant To Be

So something occured to me recently, and I felt the need to pen it down. It has to do with my ability to stay focused when someone is talking. But it probably is so much more than that.  I never realised how much energy and effort it takes to listen, and be present.

A lady came over yesterday to talk to me about something. She stayed perhaps a little over an hour. But after the first few minutes I started feeling a little bit ill. My hands started getting cold and shaky, then I started having cold sweat. Shortly after that, I realised the shakiness was worsening. Then I felt dizzy and nauseas. Then I felt like I was going to pass out. I recognised the feeling as it had happened several times before and I realised it happens when I have to “entertain” guests. It also happens when I am talking to someone outside, so it’s not just about entertaining someone that comes over.  And I realise that several times before, when people are talking to me, I have the same familiar sensation of blacking out and collapsing. I have always managed to pull through, but I am so relieved when the encounter is over.  Not because the person is a nuisance, and not because I don’t want to see or talk to anyone, but simply because my body and mind cannot handle it. This actually makes me feel sad.  What a lonely existence it is when you can’t interact with people normally.  And I do feel lonely, yet I cannot exactly have much company because it is too overwhelming for me.

Then I started thinking and wondering if every sick and maybe old person felt this same overwhelming feeling but nobody knows how to convey it.  I wonder if this feeling gives way to other emotions like social anxiety and panic attacks from being with people. I wonder if this is the reason why crowds, noise and haphazard movements also bring on these ill feelings.  Then I wondered what other areas of my life are affected by my inability to focus.

Not long ago, a long time friend of mine ‘told me off’ because I wasn’t replying messages as I should. I think it was because I had changed subjects and somewhat ignored what was being said and did not address it as politely as a normal person should. To be honest, I didn’t even realise or remember what I had done, or in this case failed to do.  Suddenly, this friend stopped responding to messages I sent. I emailed, I tried facebook – ignored. Finally I was told of my failure to respond.  Not much details were given. It hurt me, obviously, but it made me reassess myself and what or whom I had become.  I have become almost like an empty vessel and everytime I need to function normally, I drain myself like a mobile phone in the last and final years of its existence when its battery needs to be replaced and the phone is ready to expire. You know how an old mobile phone is charged 100% and within like 10 mins of usage you see the message ” Battery Low 15%” and you know your battery is ready to expire? That is almost exactly how I feel. I cannot concerntrate, and I have begun looking past messages.  I don’t answer phone calls and I cringe when someone says they are going to come over because I know that it means after that encounter I will be sick, vomiting and the rest of my day is going to be all things bad and very very challenging.

The bigger challenge is, how to explain it to everybody. Nobody is going to understand this unless they experience it themselves and I would not wish this on anyone. It is a terrible way to live and a very sad affair to have to watch yourself wither away while the world goes about like everything is fine.

You know when you read articles about depression and suicide, they always tell you to reach out to people and tell someone, anyone, about what you are feeling. So I remind myself all the time to not give up on people and to reach out if I need to. Grab someone, anyone, and tell them what you are feeling. But I’ll be honest, when I did that, and my friend told me off because my behaviour was construed as rude (I guess?) I really felt dejected and rejected and I wondered, how does a person reach out to someone if people generally just don’t understand what it’s like to be in this position? If they take your lack of response, focus and concerntration as something negative and they judge you for it?

The lady that came to my house yesterday asked me why I needed to explain my position to anyone (about being housebound and not sociable etc..) Well, this is the reason why. Because I don’t want anyone to misunderstand me the way my friend had – to think that I didn’t care about what he was saying, or that I was rude for changing subjects and not giving his comments a thought. That couldn’t be further from the truth. If only I could articulate how much I miss being part of this world in the way that I used to. How I wish I was in total control of all my faculties every single minute of the day and how I hope I can use whatever little energy I have to deal with things other than the torn and tattered condition my body and mind is in. If only my friend knew how much he meant to me and that when I texted him that very day that he told me off, was my attempt at reaching out to “someone” coming out of my depressive state.

I can’t control what is happening to me, and I can’t stop the hands of time from moving and taking away any semblence of a normal life away from me. I can’t control that sick, dizzy, nauseas feeling I get when people talk to me and I feel my mind shutting down and their words slurring.

So what is the lesson here if any? Well, if you do encounter anybody who is ill, please be mindful that this could be happening to them. Keep your visits short unless they specificaly ask you to stay longer. Keep your conversations concise and to the point so they don’t have to try and figure things out and don’t judge them if they appear absent whether in body, soul or mind because I believe that like me they struggle to just get through each new day.  It is a huge milestone to conquer one day and battle the thousands of tiny encounters that take place. Give them the benefit of the doubt, and try to be the most understanding person that you can be. Know that even the smallest task, be it walking, eating, even sleeping, is difficult. Every action that you take for granted in your life, and that you do subconsciously, is a great effort for someone else. And if someone reaches out to you, don’t shun them, don’t ignore them, don’t punish them, because you will never know if that was the day someone decided to be brave, come out of their depressive state of mind, and ask for help.

I apologise in advance if I am unable to be the person I am meant to be when I am with you, whoever you are. If your messages are not responded to timely, or at all. If I don’t accept social invitations and are absent most of the time. I understand that all of it can be construed as disinterest, at times even rude and dismissive , but in actual fact it is not so.  Just know that the things I battle with takes everything out of me and very often there is hardly anything left for anything else.

The Shell

Four months have passed by and boy what an eventful few months it has been! I haven’t been writing because I just haven’t been in the mood or right frame of mind. To say that I haven’t had any motivation would be an understatement. Didn’t feel like writing or singing or coloring or reading. I think the worries and thinking just took over me, and all the other times, I either slept or spaced out. I think the effects of medication also has changed me. I am either in a foggy state without much focus or the other extreme which is nervous and jittery. I can feel the tense nerve at the back of my neck and shoulder blades creeping down my spine and I can feel the stiffness traveling to my hands. It’s extremely disconcerting and scary. There were several days I opened my eyes and did not want to wake up. I wished I could close them again and not have to face the day. I did not want to wake up. Is this depression?

I don’t feel like talking about hospital procedures because I feel so blah about it. I feel like I am incessantly repeating myself and besides, what if people are sick of hearing about it? Are people as tired of reading about all the 1001 medical crap as much as I am tired of going through it? Procedures, doctors, financial worries. Rinse, repeat.

The only silver lining if there is one, is looking forward to possibly something to eat or drink. But because I have zero urinary function now, I cannot drink as I please. Sometimes I am so thirsty, it is not funny. I gained 4litres over the weekend and I am thirsty as hell. Worry doesn’t even begin to explain what I am experiencing.

I am now on a course of long term antibiotics for something called Tropical Sprue, on top of everything else. The “everything else” bit is a lot. I want to get into it so people don’t think I am being overly dramatic for no reason, but I feel so over it that I don’t have the energy to get into it. Besides, even if I am able to articulate and describe every facet of what is happening to me, I doubt anyone could really understand the multitude of physical challenges, mental drainage and emotional turmoil that I have been wrestling with. So is there a point to talk about it?

This is my state of mind now. It’s not a great place to be, but for heaven’s sake I am human. In fact I feel so much less than human. I feel like a shell, withering away until someday there is nothing left inside me that I become weightless and the waves will come and wash me away.

I want to take a pill so that I can be washed away quickly and painlessly. No more thinking, no more decisions, no more trying, no more fighting, no more forcing myself to get up and take another difficult step. Sleep and more sleep and no more waking up.

It is not sadness I feel. No anger, no blame, no anguish. There is nothing left. I feel like I am drifting in a fog of nothingness, and I am not even sure what I am waiting for next.

When I talk, when I smile, if I laugh, I feel it is for everyone else’s benefit. Not mine. It is so that other people don’t feel weird or uncomfortable. It is so that they don’t have to see my pain and feel discomfort at seeing someone else like this. I pretend to be ok, I sound ok, and I am getting good at talking like nothing is the matter, for the sake of everyone else. I don’t want people to be unhappy because of me. Let me be the one that carries the burden and let others go on believing that whatever they are searching for and working towards is worth it without being tainted by my despair.

I want people to be happy and to never reach this point in their lives. It is better to live a life ignorant of suffering and it seems cruel for me to make people painfully aware of reality. So I retreat into my shell of an existence, and I go on wishing only good things for others. But sometimes, just sometimes, I wonder if anyone stops, turns and thinks of me.

Selflessness

So sometime ago I met a lady in the hospital. She is also a dialysis patient, but about 10 years older to me. She looks young though, but I could see she had trouble walking. A few people I meet here have trouble walking, usually pain in the knees. I remember a long time ago I also had knee pain, getting up and moving was difficult, but somehow one day by God’s mercy and grace the pain went away. Not sure if it was something I took – could have been a supplement at that time or something else. Anyway, I digress.

So this lady, I see her sometimes and chat with her casually. Prior to this, I didn’t even know her name. Biasalah, most patients we see each other from time to time and we smile but we don’t know each other well and rarely get to talk a lot bcos we start and are stuck to our machines most of the time.

So this time, we happen to finish around the same time and were both at the admin counter to settle payment while she was waiting for the porter coming with the wheelchair. So while there, I noticed this time she had a tongkat. So I asked what happened sampai kena pakai tongkat dah? She said oh the knee problem now is worse, even more difficult to walk so the tongkat helps. She said she follows up on this knee issue with the hospital and has been suffering for 10 years now, but 10 years ago the doc said she was still young and should try to tahan the pain. Now he says she should go for knee replacement surgery and they scheduled her for the operation in Dec. She said they told her this knee replacement will only last at most 15-20 years if you are lucky, so if she had done it in younger years, then it will expire and if she lives long, how many times has she got to repeat this surgery? So they try to delay until a bit later so hopefully you do this surgery once or at the most maybe if terpaksa, then twice in your life time.

Then, she says to me but before all that, she has to go for a parathyroidectomy – which is what I myself went for 3 years ago. It was quite a traumatic time for me and it took me about a year to fully recover in all aspects. That operation is the removal of the parathyroid glands. For those who followed my story u would have known what this was, but those who didn’t or forgot, the parathyroid are tiny glands that sit behind your thyroid. Their main function is to regulate calcium in the body. It is as small as a grain of rice and there are about 3-5 of them in each person’s body. They produce a hormone that tells the body how much calcium to absorb from food, so that the levels are always balanced. When u are on dialysis, the machine takes toxins out but also many other minerals including calcium. So yr body always thinks u are calcium deficit. Then your parathyroid will work harder to produce more of the hormone to tell yr brain to tell yr body to absorb more calcium. There comes a stage where the glands go into overdrive and keep on producing, they also can enlarge as a result. When this happens they are producing too much and when yr body can no longer get calcium fr food, it starts to take it out from yr own bones. This leads to osteoporosis and brittle bones and in the longer term u can even become deformed. So, the conclusion or solution is to remove the parathyroid glands completely, especially if medication to control them does not work. This is just one of the many complications that can occur when u are on dialysis. So it is quite common for a dialysis patient to have to go for this surgery at some point. So she tells me, she has to get this done now and this surgery pulak is scheduled for August.

So I was thinking, Aug one surgery, then Dec another! So fast and all in one year! How is she going to recover from one and go for another so soon when it took me so long just to recover from the first one?! And on top of that this lady also has Hepatitis B. I don’t even know her medical history and what else she suffers from.

But you know what? Every time I see her, she is smiling.

I have met people who have less problems who don’t smile. Who have just one problem and complain. Who get a headache and that’s all they have and immediately they cannot function AT ALL. Whose lives are so good that even the smallest inconvenience or challenge occurs and they are completely incapable of functioning. I ask myself, why are some people like that and others like this lady are the total opposite? She is the kind of person that when you look at her you feel good. There is a radiance and positivity in her aura that affects me.

So the lesson for me was, our response to anything in this life, is a choice. We choose to either complain and feel depressed and groan in agony over the slightest inconvenience OR we can approach life with an encouraging smile and a tenacious attitude. Knowing that whatever we are and who we choose to be, not only affects our own lives but all the people around us. We can also look at the next generation we are influencing and whether we are making them into dependent, entitled little brats, or are we preparing them to face life’s challenges bravely? How will they respond when faced with something painful?

There’s just so much that I personally took away from this lady’s plight. And so much that I realise I could change within myself and my own outlook to how I see things and how I handle it.

I can tell you, it is not easy. There are many days where I just break down and cry. It is so very very difficult. Most days are plagued with not just one, but several symptoms of pain in various parts of the body. Most of the time, I cannot even explain, describe, or tell anyone what it is about. Normal people always want an explanation, and they think every illness can be defined. I can tell you there are some situations where I don’t even have the name of the kind of pain I am feeling and I don’t want to face anyone because the feeling I have is – malas to explain, malas to answer 1001 questions that has no benefit, malas to see you looking at me with eyes of confusion, pity and most of all knowing that you can never understand, unless you yourself go through it. Mostly, it is not wanting anyone seeing me so weak, so helpless and not being strong enough to put up a front for your benefit so that you don’t feel uncomfortable when you are around me. Because I know, that you will be uncomfortable. Nobody wants to be around pain and discomfort. They cannot handle knowing or imagining it and they don’t want to be reminded of it. Everybody would rather go through life ignorant of reality and ignorant of other people’s pain, and I think because I know this, this is why I avoid people. I don’t want to be the reason why you feel uncomfortable even though I am so much more uncomfortable than I can even begin to describe to you.

I stood there in front of this lady thinking to myself that to say she inspires me is so cliche…it was so much more than that. She gave me hope. She helped me to believe that despite our circumstances, we can choose to approach our challenges with a smile and a positive attitude. She is someone I would love to be near. Someone who exudes strength and tenacity that I want to have as well. Dear God, please allow me to meet more people like her because these are the kind of people who actually make a positive difference in life. Not the whiners and complainers, not the ones who who overreact at the slightest discomfort. Not the ones whose lives are so perfect that they have no clue what other people are going through. I always want to be a compassionate person who is never insensitive and never oblivious to other people’s suffering. I want to change whatever is wrong with me and make it right.

I want to make a difference in someone’s life the way she made such a big difference in mine.

May all of us have a change in perspective, to see things in a way that truly matters, to stop being so superficial in our life goals and our petty demands, and to truly reach greater heights in our contribution to other lives that deserve so much more of ourselves – the best of ourselves or at least the better part of ourselves. To live life not just for ourselves, but for others. It is not so much about what we want, but what we can do for other people that will determine how much our lives truly matter in the end. Because it will end, sooner then we think.

Chronic Idiopathic Urticaria

A couple of months ago, I became really ill. It started out with diarrhea which I had been experiencing for over a year on and off. Thinking that my bowel had just become sensitive due to age, digestive issues and so on, I dug into some research. I suspected that maybe I had Irritable Bowel and for a long time I was afraid to go out because I had to be near a toilet often. If I so much as ate or drank something, I would have to visit the loo almost instantly, and this is not something easy to do. On top of that, I was slightly uneasy about the state of our local toilets, some not even having any bidet to wash properly etc. I am not someone that can just wipe off with tissue and be fine…so rather than live in discomfort, I became even more of a hermit, staying in and hardly ever venturing out. It’s hard bot to be depressed when your life is dictated by things like this. Anyhow, it was going on for a long time, and then suddenly at the end of last November it really took a turn for the worse and I had to go to the specialist immediately. Luckily she was able to see me at such notice. I was vomiting and had really bad stomach pains unlike anything I had ever experienced before.

I was in so much pain outside the doctor’s office, I thought I was going to collapse right there. The doctor said I had to be admitted, I said I did not want to initially, but after some major battling down at the X-Ray dept, I went up again and told her ok I agree to be admitted because I knew I wouldn’t make it on my own. With that they were able to put IV meds into me and within seconds the pain subsided a little. They gave me a room and everything and then took me down to do a CT scan. I thought it would be a normal CT scan as what I had done before for my brain, but since this involved the entire digestive system, it was different. I had to drink something, they injected it inside my veins and the assistant in the room also gently told me they would have to insert some of that liquid dye into my butt so they can have a better view of the colon and all its workings. It was uncomfortable, I will not lie, but she knew I was anxious and she held my hand as long as she could and spoke soft comforting words to me which helped me relax. I didn’t get her name but I was very appreciative of this gesture. As I had developed anxiety, the CT scan actually triggers it, so with her help I did some deep breathing and got through.

I was in hospital for a couple of days and by the time I went home I thought I was ok. But I actually had a relapse twice after that. They said it was the rotavirus and perhaps some other bacterial infection as well. So I had three different rounds of antibiotics. I think it was only after 2.5 months that I was on the way to recovery. Such a long time of suffering and uncertainty.

And now, as soon as that episode is over, another ensues. I started getting hives every day and am still getting it even until today. Again, I dug into researching it and it is called Chronic Idiopathic Urticaria. I tried several anti-histamines and finally am taking a dosage of Telfast in the morn. With an additional tablet of Hydrocort if needed, and then also Piriton towards the evening/night. Eventhough the meds suppose to work 24hrs but it doesn’t for me and in less than 12hrs it wears off. I even tried Aerius and it’s the same. It has been a very frustrating few weeks trying to get a handle on this condition. Its symptoms are basically flushing, intense itchiness and heat rashes appearing hear and there all over the body. I still dunno what triggers it, I think it’s going to be a long process to get to the bottom of this. I spoke to my kidney doctor and he says that this is inevitable. Sad, but true. I think due to the toxicity in the blood, the body releases histamines to counter the toxins and the result is hives.

I am sad, slightly frustrated, I won’t lie. It’s disturbing and can become very uncomfortable. But I have to work through this and just keep going. There are worse things out there, am just grateful this is what I have to deal with now and not something else which could be worse.

So that’s the latest, in case anyone out there was wondering. Will write again at the next available opportunity,

Hope in times of trouble

Lately, some terrible things have been happening to people close to me, and I have had to think of people other than myself.  In a way it is good to focus on other stuff and forget about my illness for a while.  The days seem so dreary when all I do is think about how to feel better and not feel so sick.

Although I am not at liberty to go into the details of what those terrible things are since they are not my stories to tell, it makes me think that life is funny like that.  It throws you many curve balls and expects you to catch them all.  Human beings on the other hand are so vulnerable. Sometimes I wonder how any of us survive this hard life and all the challenges that come our way. No one is safe, and no one is spared. Everyone faces some kind of heartache along the way.

While some of us may be to blame for some of the things that happen, a lot of time it’s just random things that happen to people. We try to find the reason, the root cause, and someone to blame, but in the end I think even if you did every single thing right, you would still not be able to protect yourself from bad things.  You would just be safe guarding yourself for the longest time possible, not knowing when disaster will strike.

We can’t ask why, because we will never get an answer and there’s no point dwelling on the unknown.  We can only forge on, stay strong, take courage, and keep our chin up for as long as possible.

I pray for those going through difficulties right now, and I hope God will have mercy on them and lessen their burdens and give them forgiveness and extend his grace.

David wrote in Psalms 25: 1-7:

In you, Lord my God

I put my trust.

I trust in you;

do not let me be put to shame,

nor let my enemies triumph over me.

No one who hopes in you

will ever be put to shame,

but shame will come on those

who are treacherous without cause.

Show me your ways, Lord

teach me your paths

Guide me in your truth and teach me,

for you are God my Savior,

and my hope is in you all day long.

Remember, Lord, your great mercy and love

for they are from of old.

Do not remember the sins of my youth

and my rebellious ways;

according to your love remember me,

for you, Lord, are good. 

…..and then in verse 16-21: 

Turn to me and be gracious to me,

for I am lonely and afflicted.

Relieve the troubles of my heart

and free me from my anguish

Look on my affliction and my distress

and take away all my sins.

See how numerous are my enemies

and how fiercely they hate me!

Guard my life and rescue me;

do not let me be put to shame,

for I take refuge in you.

May integrity and uprightness protect me,

because my hope, Lord, is in you. 

Edema & Other Challenges

Time to write again.  It’s been a long time no stories from my side.  Partly lazy, and partly nothing entertaining to cerita. Sometimes we feel like we need to write a cerekarama so people will be entertained, but my stories are usually so sad and challenging I thought maybe people are also quite fed up to read the same old thing over and over again.

Well, I can’t remember if I wrote about this before because it wasn’t a problem for me before, but it became a problem for me almost a year back. It is about fluid intake.  When I first started dialysis in 2012, I did not have a fluid problem because I would still be going to the loo to pee as normal.  It took the nurses and the doctor some time to realise and accept that I was one of those rare cases whose residual kidney function in terms of filtering the water out was still working.  So the machine didn’t have to take out much water at all and I did not have any fluid intake restriction.  A normal patient would need to restrict their intake by 500ml between sessions. If you still pee some, then you can go up to 1L or maybe 1.5L if you are lucky. I did not have this problem so I was drinking as normal.

Then, in Sep/Oct 2017, I started to retain water and I noticed I wasn’t pee-ing as much.  Drat. So now almost a year later and I now have to restrict my fluid.  It’s not as difficult as it sounds, but it does start to be uncomfortable when you go pass 700ml. Just imagine, a cup of anything is about 200ml.  If u want to keep to a 500ml restriction, that means you can only drink about 2 cups of anything.  This is especially hard over the weekend cos you have 2 days free, how to only drink 2 cups?  So what I do is I take sips. I never finish any drinks. I no longer allow myself that leisurely cup of tea several times a day.  If I go out, needless to say ordering a drink would be a waste, unless someone is willing to share with me.

So what happens when your body starts to retain water? The first and most obvious sign is physically obvious. You start to bloat. It is called edema. The first place this happens is your legs. From your thighs down to your feet, the water ‘bertakung’ there. You can see it literally. Your ankles all swollen and then the top of your feet, your calfs and everywhere. You can press your skin and see it sunken at the area. They call this the pillow effect. But looks aside, it isn’t comfortable because your heavy legs now make it hard to walk. Sometimes, your legs become stiff. You definitely cannot jalan-jalan anywhere. Not even 20 steps and you want to turn back.  Then when your legs are like balloons the water starts collecting in your face. For me it’s all over my face, my cheeks and even my eyes. But the worse of all is water getting into your lungs.  I find it hard to breathe, hard to sleep, hard to do anything because I cannot catch a breath. This part is hard to describe, but it is no small feat.

So this is what it has been like for the past year. Struggling with water.

I think the important thing about surviving an illness is to not let the emotions take over you. You don’t have time to give in to any sadness or depression. You need all your strength to fight the physical things that are happening to you.  You have to get a grip, and forge on. You have to. Because nobody is going to do it for you, and they couldn’t even if they wanted to. You can have moments of despair, that is normal. Fear, hopelessness and uncertainty is an every day affair. But most of the time, you shouldn’t be dwelling on those things, that’s all I can say.  You cling on to the happy stuff, grateful that they even exist. You find small things to look forward to – a day in the park, an evening picnic, a beautiful scene, a great movie, an interesting TV series, a conversation with a friend, conversations with God, a small treat you allow yourself to have, playing with a pet, buying something small, anything.  Realise that there is beauty in everything and don’t take even the smallest things for granted. That is how to get by.  I am not saying I don’t break down often. I have them, I promise you.  I am easily let down, so easily disappointed, because my resolve is already weak, and my mind is constantly on the brink of either joy or sadness, no more in between.

On top of that the sleep deprevation is constant. So now I sleep whenever I can, in between things, during the day.  I am afraid to go out, whenever I step out, I sometimes have to quickly go home. There are days where I survive maybe 1-2 hours? But they are very rare, unplanned and far in between.  I need to be near a toilet, and near the things I am used to. It is hard to explain, but that is the way it is.

And then there’s the panic attacks – which normal people think is nonsense of course.  All you normal folks, enjoy it while you can and judge not. There will come a time perhaps in the course of your life where one day you too will face extremities that break you and then perhaps you will know what it is like to live in constant uncertainty and fear of what you do not know nor understand.  Anxiety is a very real problem, and something difficult to control.  For people who truly know me before I became sick, you will know that I am actually a very strong and independent person. For me to succumb to anxiety attacks means that my body and my mind have gone through too many traumatic experiences to face anymore.  So the next time you meet someone who seems weak, scared, irrational, claustrophobic, cannot function in crowds, sensitive to sound, movement, etc please be understanding. You don’t know what that person has experienced and why they are that way.  Nobody chooses to be like this. Have some empathy and compassion and don’t judge them for circumstances beyond what they are able to alter.

Well, I have to end here today although there is still much to say. Perhaps another time.  Am in the hospital, about to have some food, I have 3 hours left to my treatment today. I look forward to it being over and going home. That is my little treat – to be able to go home and hopefully no terrible side effects, no vomiting, good digestion and maybe some good food and rest. I don’t need anything terribly exciting, just for things to go smoothly and that would be a good good thing.  Till next time! xo

Infectious Disease Control

Today I learnt something new (to me) & interesting.  Being on dialysis for 6 years is a constant learning process about life, health, disease, recovery, food and so much more.  I honestly learn something almost every week and I guess because I am curious and always ask questions, I tap into the knowledge learnt by all the different healthcare professionals and I draw on their experience to complete the things I want to know.

The conversation today started because I enquired about the 2 isolation rooms at the new centre. They have 2 private rooms, and 2 isolation rooms which I assumed was for the Hepatitis patients because previously, I noticed 2 make-shift rooms for Hepatitis so I assumed these new rooms are to replace those.  So I was told, the isolation rooms are for Hepatitis B and C patients respectively.  This led to me asking about Hepatitis, to which I was told that Hepatitis B is a highly infections and extremely dangerous disease to contract.  Like HIV, it is contracted through bodily fluids and it basically kills you slowly from the inside. The word used was “rot” which I felt is such a terrifying thing to imagine.  Hepatitis B will lead to liver cancer.

Now what does this have to do with dialysis or me? Well, I learnt that it is important for a centre conducting dialysis to correctly implement and follow an infectious disease control policy and procedure and that it is the most important thing for any centre to have.  Failure to follow the protocol will result in infectious disease being spread amongst not only other patients, but staff as well.  I was told that several dialysis centres have closed down due to all patients AND staff contracting Hepatitis B due to poor infection control procedures.  In fact, when centres are audited, the first and most important part that the auditors want to see is the infectious disease control procedures.

While as a lay person, we may assume that everyone takes the same precaution but it is not always so.  There are many places that use short cuts. It is the same as when we cook.  The procedure may be to wear a chef hat so your hair does not get into the food, wear gloves when you cut meat and vegetables and so on. But how many kitchens actually do it? So it is the same here. For example, if you put on gloves to do one thing, and you get interrupted half way, you need to discard those gloves, put on new gloves and then proceed to do the new thing. Then when you come back, you discard those gloves, put on yet another set of new gloves to continue what you were doing before. This is just to illustrate a simple example.  However there are many procedures that must be followed because unlike a kitchen that may only give you food poisoining for a day, this involves blood and people’s lives long term.

This is why it is so important to know all these things before you put a loved one in a centre be it for dialysis or any other health reason.  Imagine if you were the patient, how risky it would be to contract an infectious disease on top of everything you are already suffering from.  You will never know and feel the danger, risk and fear until you are subjected to it yourselves.

The Cold Nothingness

The days and weeks have gone by without me realising that May has almost come to an end.  I also realise I have not been able to work a single day in May, meaning I won’t be able to pay my bills this month.  I find it hard to fathom where the days went.  I think I have been in a fuzzy state of mind where everything has seemed to pass by me in a blur. I have not had a good night’s sleep in weeks.  Even in my desperation, turning to medication, I wake up startled after 1-2 hours and never seem to feel well rested. I have been in a state of constant anxiety, feeling like I am short of breath, and these physical and phsychological states go on for hours on end.  In the day time, I panic for almost no reason or because of the slightest discomfort.  I don’t seem to be able to normalise and make sense of a situation even when it is only a little stressful.

My senses have been heightened and I have been struggling adjusting to the new dialysis centre with it’s extremely cold centralised air-conditioning, wide open space, and noisy chatter from the TV sets around.  I have been having strange allergic reactions every dialysis with no explanation in sight.  Just torture after torture, be it at home or in the hospital, day or night.

I woke up today with no will left.  After another sleepless night, and a persistent heavy head, I did not feel like I was ready to face today.  I woke up early, but somehow I still found myself being late.  I was afraid that I would not get the space in the hospital where it isn’t as cold and not as bright and I didn’t think I could face 4 hours in a cubicle of brightness and ice. I cried because I did not want to face today.  Could not face today.  Yet I knew I must.  While trying to push back tears, I dressed, and with what can only be described as a heart full of hurt and despair, I braved what was coming.

As expected, it was a difficult day, probably almost as worse as the weeks that preempted it. As if on cue, and probably sensing my desperation, the nurses called the doctor to report the latest blood count and to illustrate the challenges I had been facing lately.  Running at a blood count of 6.8 since last Friday, the doctor ordered a blood transfusion today & another one on Wednesday.

I am so tired.  Even in my sleepless state the last few weeks I managed to pay a visit to the cardiologist to discuss further the state of my fragile heart and my incessent blood pressure that refuses to budge. “We are running out of medication to try”, he echoes the nephrologist.  I know this even before he says so.  My frustration and hopelessness arrived weeks earlier. I guess I am a perfect example of ‘being prepared’.  The sad part is, I am always preparing for bad news.

The walls of my heart have thickened.  The doctor says this is to be expected, as if I am supposed to accept it as normal.  I am just numb.  It is just one more thing to add to the growing list of things I cannot control and I don’t understand completely.  My homework if you can call it that, is doing medical research, trying to understand the implications of what is being told to me.  All the while knowing that all of it is completely beyond me.

I try to put one foot in front of the other, as I walk from the cold halls of the centre, pass the renovation works, and further still into the colder halls of the new wing where they are selling my lunch.  I go slow, afraid that I cannot manage it.  The usual spring in my step, missing.  Before I know it, I am back in my cold cubicle, not anticipating lunch.  The 4 hour machine and what it entails welcomes me.  Suddenly, I am staring upwards at a bag of red blood with my name on it.  Hours have passed. My existence only significant to the constant pump of the machine.  I look forward to the contents of that A-Positive bag.  It may revive me.  It may give me the life source I need to put more steps in front of me.  It may help me sleep.  I say a prayer.  I am not able to finish my prayer, but God knows what I intended to say.  I find my mind frequently traveling to places of non-existence, and then something yanks it back to reality.

I barely exist anymore.  You will never know the feeling until you are there yourself, at the edge of life, staring down into the abyss. Nothing below, and nothing above. Just white clouds of nothingness greet you at every turn.  That is my existence now.  I have no more to give. The image that stares back at me now is a pale resemblence of someone I used to know.

I am done fighting the despair, the hopelessness and the quiet desperation.  I give in, close my eyes and empty my mind as it drifts off.  I am sorry I cannot do better. I have given all that I can give.

It continues…

So after the blood vessel in my eye broke, I am happy to report it cleared up within a week! Which to me was fast. I didn’t do anything different except to use some essential oils, (mainly Frankincense) and cup my eyes. I continued using the usual eye drops for dry eyes.

Soon after, I started developing some kind of allergic reaction to something. It seems to appear whenever I am on the dialysis machine. This has happened before but it wasn’t as severe.  This time the symptoms were itchiness all over, a burning sensation coming from inside the body where my skin is hot on the inside but a cool biting sensation on the out. As time progresses, I get really uncomfortable. Breathing is quickened, and I am wriggling all over.  One day it got so so bad, I started crying cos I really couldn’t tahan, and every session we have to complete at least 4 hours to have an effective dialysis session. As the days progressed, it got worse. Well into the first 30 mins, and the symptoms would start. So last week, I did not complete any of my sessions sucessfully.  I have had several discussions with the hospital and we are going to try to find out what is suddenly causing this reaction in me. It is going to be an extensive experiments involving testing out one thing after another and I am going to have to go through the sessions as part of the experiments. Prior to this, nothing had been changed and I was fine.  Could it be that I developed a reaction when I had no such reaction previously?  I had eaten nothing different, or taken any special new medication.  The new meds doc prescribed is on hold bcos I want to see how this issue resolves first.

My BP is through the roof. Most days it is between 190-200/90+ There is a concern but I have exhausted trying almost all the different types of med out there and I cannot tolerate most of them. The ones I am currently on seemed to have reached a plateau. So I need to add on.  The last option is something that may be disturbing to some people as it causes hair growth and increased weight + perhaps some nausea and dizziness.  Honestly, I would take hair growth and increased weight over nausea any day.  You have to pick your battles. But weight gain does concern me a little too bcos it comes with its own sets of problems like you start to develop back pain, or yr existing condition worsens. You may start to have foot issues like plantar fasciitis which is very painful. The list goes on.  I have never ever really been fat, but even 10kgs over my usual weight and some signs start to occur. So am not looking forward to that side effect, if it happens. This BP issue will not resolve as I am holding off taking any addition meds for now. I hope my heart can hold out.

Speaking of my heart, there is some concern that my heart may be giving out. There have been some minor signs, and the hospital has recommended me to see a cardiologist.  There is a thought that my heart could not be able to handle the dialysis which in turn is also causing the symptoms I mentioned earlier.

As you can see it is very complicated, and many things overlap each other.  To get to the bottom of something, many tests have to be performed and investigation needs to be conducted into the root cause. This has been going on from Day 1, and it isn’t showing any signs of letting up.

I sometimes wonder if my days are numbered and how many have I left?

There are days where it is just filled with suffering from morn to night, with hardly a break in between. Those days, I just curl up into a ball and say ‘Why why why”…for in those moments your mind is blank with pain and your body can’t go on anymore.

And if you think that this is it, well, my anxiety attacks are back after a 2 year long absence. And they are back with a vengence. I can have 4-5 attacks a day that make me feel like I am losing my mind.  The feeling is not something that can be controlled and you really feel like you are losing it completely. Nothing makes sense, only that constant feeling of panic and confusion. I am so afraid I have become addicted to my anxiety medicine, so I only take half a dose at night. One dose only if I am truly desperate. The rest of the day, I push through it.

It is difficult.  There are no words.  It is indescribable.  I wish this on no one, yet I am hoping someone out there understands.  It is pointless talking to normal people, they just say the same things which I am sorry, do not help at all. “Try to calm down lah. Don’t worry lah.  Take it easy lah.  Take care lah. Don’t think so much lah.  Drink water lah.  Get a grip. Snap out of it”…..and the list of futile advise goes on… I know they don’t mean anything bad by it, and they probably don’t know what else to say, but those are the worse words you can say to someone who is suffering.

If you really want to help, you listen, you validate the feelings, and you don’t belittle it by general meaningless advise that does not help.  People cannot snap out of it or choose to be better.  If they could, they would.  Surely you’re not suggesting they have a choice and they choose to suffer? Try to be more sensitive to their plight eventhough you can never understand it.  Will write more on people’s responses next time.

For now, here’s to hoping today is one of the better days. And if it’s not, well there is always tomo and the next day. You pray & you hope. That is all you can really do.

 

One thing after another…

What an eventful year this has been so far.  I feel like my medical journey is a never ending one, not allowing me to have any break or rest from the day to day symptoms and complications that my condition brings.

After a tumultous couple of months, last night I sneezed and several minutes after doing so I walked passed a mirror and saw that a blood vessel in my right eye had erupted, causing a splotch of blood that was a red as crimson.  Of course, I freaked out, but once I managed to tell myself it wasn’t a big deal, I realised that this is now going to be yet another thing that causes people to stare.  As if I don’t already have enough to deal with.  And this morning, it actually became bigger. Now there is a red splotch covering half my right eye.

This could have been easily caused by my elevated blood pressure which does not seem to be under control despite changing several meds, and being on the highest dose with 2 different meds currently.  When I wake up from sleep, even before I can move about, my BP is already in the region of 190/90+ If and when the meds work, it may come down to about 160/90+ or hover around 170-180+.  If I am fortunate, it may go down to 140-150+ later in the evenings.  This is what is normal for me now.  But if you’re totally healthy, then these figures are of course very abnormal.  But for me, they are what is normal now.  There have been several occasions where it has been over 200+.

How do I feel? Well the most noteworthy symptoms are feeling hot often and feeling extremely stressed out over small things.  I noticed am not able to handle pressurised situations and circumstances well.  If it’s crowded, I start feeling uncomfortable.  If it’s stuffy, noisy, too bright, I definitely cannot cope.  If a decision has to be made on the spot and there’s no time for me to think things through calmly, I panic.  Am just not able to function like a regular person.  This inability to be as I were before, makes me shy away from seeing anybody.  I feel that people are going to notice my weird reactions, and judge me for it.  Or at the very least wonder what is wrong with me.  I think the worse is my reaction to noise. It doesn’t have to be only loud noise, it can also be constant noises like a ticking, or someone opening and closing something repeatedly, or kids doing finicky things with their hands and bodies.  Some adult voices that are high pitched or of a certain frequency makes me uncomfortable too.  Action packed movies are a bit of a challenge as well.  I am wondering if theatre experience has changed much as I have not been to one in a long time.

What I am comfortable with is the calm and serenity of nature.  How strange and yet somewhat miraculous that when our bodies are breaking down, it instinctively wants to go back or be close to and at one with nature where it came from and where it is meant to be.  I love hearing birds chirp.  I love communicating with my pets.  I love the sound of trees rustling in the wind, or the howl of a blowing gush at night.  There is a bird behind my house that loves to sing at night and wee hours of the morning. He makes me smile. My reactions are so strange to me, and yet none of them can be controlled.  They are all involuntary responses and they are, I guess, the new me, which I myself am trying to grow accustom too.

Sometimes I feel like I no longer understand how things work. Everything is new and strange.  I am not able to explain myself to others, and I feel that that is a shortcoming in itself.  A major flaw that I am not able to fix.  Not being able to acclamitise to society, and to ‘sesuaikan diri‘ with the environment around me.

Can I truly expect people to understand and have compassion for this weirdness that is me now? Sometimes when I think about it, I want to cry.  Not being able to fit in, not being able to do normal things. To sit in a crowded auditorium, or watch a play or listen to sounds like I used to.  I think it’s the body’s inability to focus out and cancel the unimportant noises and to just focus on the one we need to listen to – that’s the hard part.  Just not able to do it well, then the body becomes highly stressed.

Besides that, there has been this persistent headache and nausea that has plagued me, which I suspect is medicine related.  I have been testing out the different meds and supplements for weeks trying to identify which is the one that is causing these symptoms, and then last night, the blood vessel in my eye had to burst.

I often feel as if before I can get used to one thing, or sucessfully manage something, many other things are falling on top of each other.  Not giving me time to manage, to understand, to find solutions. Not giving me the breaks I need.  I often feel like leaving everything behind and making time stop, by taking a short break somewhere up a hill or at least a landscaped garden, to clear my head and reset the confusion and mess.

Is there anyone out there that understands what I am going through? I wonder.

Old Friends

Yesterday, I met some old friends.  This may be something normal for most people, but it is extremely rare for me.  Most days I am at home, a recluse, quiet and doing my own thing.  Sometimes I even feel I have lost my confidence in seeing people, dressing up and going out.  It may not seem that way on the outside when you observe me, but I am just human like everyone else, and what I really feel is on the inside where no one sees.   I feel self conscious about my edema (bloating/water retention), where my face and my feet balloons up when I have excess water.  I feel conscious about my skin on my face and my body as I have had so much skin issues and marks all over.  I started feeling conscious about the fistula bumps on my arms where the needles go in because it is very big now, and so bruised, it really looks like a deformity.  And, the list goes on. Sometimes, I feel embarassed just having to explain to people what’s wrong with me or to get used to the looks I get from strangers when they stare.

But, yesterday it was so good to see my old childhood friends Liza and Jason.  These two siblings have always had a special place in my heart.  Eventhough, we never stayed connected all through our growing up years, yet I will never forget our childhood days where I would look forward to my parents dropping me off at their house, and their mom usually trying to feed me something.  Bless her heart.  Then of course, we grew up, and me personally, I had stuff to deal with.  Everyone has stuff to deal with and I guess I wasn’t as good a friend as I could have been in staying in touch and remaining connected to these two people, when I feel now looking back, that I should have.  I regret that I did not make them more a part of my life and that I didn’t make myself present for many parts of their lives.  And now that I feel I don’t have much time left, I feel sad that there have been so much that we missed going through together and as a result we missed so much about what happened as the years have gone by, taking with it parts of us that we can never get back.  However, having said that, there’s still time to make the best of what we have and I guess if we care enough, we have to make the effort to be there, come what may.

I guess what I want to say is I am sorry for not being more involved, I am sorry for not being someone that was too caught up with my stuff that I couldn’t be there for your other stuff, my actions never really showed what I felt, the truth is I do love both of you and cherish your friendship.  With you guys I can really be myself, knowing that you accept me for all that I am, good and bad and I definitely accept you guys for all that you are – and that is something I cannot do with just anyone.  Thank you for being the kind of down to earth, no nonsense, say-it-like-it-is, honest, kind and warm people you have always been as kids and now as adults.  I will always remember the wonderful memories of just playing together when life was simple, worries did not exist and all that mattered was what time we can go to the field across your house and play! You both will always have a special place in my heart and it’s not too late to be the kind of friends that we should have always been.

Where the path leads…

Last night I had trouble sleeping again. Everytime I set my head down on my pillow I felt like I couldn’t breathe.  I tried to think back to what I ate and drank to figure out if I had consumed more than I should have.  I couldn’t really remember if I did, but the feeling I got definitely told me that my body had excess water.  My legs were swollen as usual and the not being able to breathe is a sure sign of what they call “overload”.  I started reading some articles on what I could do because although I read them before, sometimes there’s so much info, I tend to forget all of it.  As I read and read, I started feeling more and more like my days are truly numbered & that I would have a limited time left to do all the things I wanted to.  One article mentioned that if I chose to stop dialysis, I would die painlessly but that I would have maybe a week or several weeks before I passed.  I have read this before, but I never really gave it a second thought.  That certainly puts things in perspective for me.  A week to several weeks is a really short time.  They didn’t even mention months, or years.  Just a week (1 week!!) or several of those weeks….

So I asked myself, “What do you really want to do Corina?”  Since time is of the essence, I should get my things in order.  I should see the people I have been meaning to see, and say the things I want to say, and write the letters I wish to write to make sure that I don’t regret not having done these things earlier.  Especially since confusion, brain dysfunction and dementia are some of the side effects you could have when you struggle with ESRD (End Stage Renal Disease).  I wouldn’t want to be caught unaware and it being too late to tell people what I really feel about them, about my relationships with them, and say the things I have been wanting to say.  Then, I also think it’s important for me to think about the things I want to do – the places I want to go & the things I want to experience.  Ever since I got sick, I have been gravitating towards nature & calm serene environments.  I used to be very much the opposite before, preferring large cities, night lights, and being in the centre of the action.  But I’ve changed, even without me realising it. I find it amusing and interesting to observe such changes in myself.

Besides this, there is also a part of me that feels it is futile making plans “for the future”. You know when you’re young, you think to yourself “someday I will go there, someday I will have a family, someday I will do this with them, someday I will meet someone special, someday I will have the chance to experience real and true happiness, someday I will be able to celebrate my birthday on a large and grand scale with loved ones all around, someday I will have a home that I love, someday I will have a small but intimate wedding, someday, I will buy those shoes I saw in the window of that shop, someday I will get to see a concert I’ve always wanted to, someday I will have enough money to not worry about money ever, someday…someday…and it goes on.  I realise that I stopped having my ‘somedays’…I think because I feel as if there is no point in having these dreams if there is no time to ever realise them.  It may seem depressing and sad to you reading it, but to me it’s just another reality, another way of seeing things, and an opportunity to view things a little differently than normal.  If you didn’t know how much time you had left, you wouldn’t put things off to ‘someday’ would you? You would make as much as you can, a reality now.  You wouldn’t save money for a rainy day if the rainy day is already here….and you wouldn’t dream of the future when the only time that you are certain you have, is the time that is the present.

So, it really changes you. It has really changed me.  I am a completely different person.  I laugh at small things.  Things that may have seemed trivial in the past, I find funny and amusing now.  I never lose the chance to laugh at the silliest things.  Preferably when no one is around, so that people don’t think I am weird for laughing a bit too loud at something that wasn’t all that funny to them.  I giggle a lot, and that giggling sometimes sound so funny to me I end up laughing like it’s really really funny. Laughing at myself for feeling so silly and giggly.

I am so over worrying all the time about everything. I want to throw caution to the wind.  My future is in God’s hands.  My present is what I deal with now, and it is all I can see. I cannot see beyond tomorrow because I may not have it. I feel like I don’t have my own future in fact, it does not exist.  I only have today, maybe tomorrow if I am fortunate, and it is impossible to plan for anything beyond that. I just have to make the best of whatever is in front of me, and cherish every moment as if it was going to be my last.

So maybe, I will slowly start to write letters soon.  I will write because I don’t know if I will get to write them in future.  I will say the things that’s been in my heart, that I never showed, and that may have appeared differently on the outside. Maybe it will be filled with sweet nothings, and maybe I will apologise.  But overall, it will be words that say what I cherish, before it is too late to ever say them.  But to everyone who does not get a letter, either because I may not have enough time by the end of it to write them all, or because my slow and confused mind forgets, don’t take it personally. I am operating on borrowed time and with the mental capacity of someone who is not in full control of my faculties.  I do cherish every encounter, every person I have met, every friendship I have fostered whether short or long. I wish I had more time to smile at you and say thank you for knowing me, for the memories and how nothing and no one is insignificant.

Whatever your circmstances are, never give up on life, on love and know that this too shall pass.  It may seem as if you never amounted to anything, but remember that God sees things so differently from how the world views it all.  I may not have achieved much by the world’s standards, but I certainly am aware of my personal growth and the changes that have accompanied it.  We live according to God’s plan and we should never regret where He takes it and where our path leads us.   Whatever amount of time He decides to give us, we must live each moment in gratitude for what has happened and what we have learnt through it all.

Small Blessings

I was having a challenging day today at the hospital, and the last couple of days hasn’t been easy either. Sometimes, I can’t even begin to list down the symptoms I am experiencing, and others are just embarassing to even talk about. On top of that to have to worry about getting by financially, is just tough. I don’t even know how to look at things or what to think about, I just put one foot in front of the other and walk. Other times, I sit and stare blankly at the TV or at my phone, often times catching myself unaware of what I was thinking about and what I had intended to do earlier on.

In the last week, I have had several bouts of diarrhea.  I cannot identify the cause at all, but it meant I had to stay close to home.  I also had about three episodes of dizziness, nausea and fainting spells which left me debilitated and unable to do anything.  I had a problem with my right foot, it swelled up and I could not walk properly for 3 days.  These are among a myriad of other things that happen, things coming and going sometimes too quickly for me to even mention.  Sometimes I think it’s funny if anyone asks me, “How are you?”  – and wanting to answer honestly and not knowing where to start! I smile and say, “Not so good.” Although I do desperately want to say I AM FINE! I wish I could, because when you say that, it seems to make other people happy, and it is such a joy to see other people smile.  But lately, I haven’t been able to say that.

Putting things in perspective, I think I haven’t had a completely stable period of being somewhat well, for such a long time.  That is not to say that I don’t have brief periods of relief, because I do, but more often than not, they do not last.  I think it is hard feeling like a yo-yo or a bouncing ball, so what I do is simply not feel at all.  It is easier when you have no expectations whatsoever, then you can just take each moment as it comes and battle each symptom without thinking too much about them.

To say I am tired, is the understatement of the decade.  I really am so tired.  Sometimes, I am just so tired of giving myself pep talks.  I think I have stopped talking, most of the time.  I talk to my dog and my cats and that is where some of the comfort comes from.  But to talk to myself & others, I feel as if it is pointless.  To repeat, to explain, to repeat and then explain again, is excruciating and so so tiring.  The questions are always the same. I think the number one, numero uno winner of a question has to be –  HOW MANY TIMES DO YOU HAVE TO GO FOR DIALYSIS?  Followed by, SO WHAT CAN YOU EAT? and followed also by, IS IT PAINFUL…WHAT HAPPENED TO YOUR HAND….and so on and so forth.  Tiring you know.  Not that I don’t want to answer.  But sometimes I hope that if people care, they would do some reading, google some pictures, understand the situation before talking to me so that I don’t have to keep repeating the same information again and again.  Under normal circumstances, I really don’t mind, but after 5 years, it gets a bit old, even for me.  And I AM SO TIRED of the questions, of the repetition, and just of being sick overall.  Can you really blame me?

I have given up on trying to look presentable, and I think I have almost gotten used to being stared at in public.  At first, I would feel very conscious, shy and uncomfortable.  I mean, can you believe that even when I sit in the hospital lobby waiting for my transport, people sitting around me would stare at me.  Some do it discreetly, which I appreciate, but others just stare and stare like I am some museum exhibit.  I don’t know why they are staring really.  Is it my hand? My face? My hair? My baju? What? What? I don’t know! I know I probably look sick, but I dunno what specifically looks out of place or weird.  So now, I give up trying to figure it out, or feel anything about it.  I am almost numb when people stare.  Sometimes I feel like saying, “Yes?” Because I actually really want to know why they look.  Not rudely or anything, but just out of curiousity, so that I can fix whatever it was that made them stare so that nobody will stare at me again in future.  This used to happen way before I shaved my head, so I cannot attribute it to the funny way my hair is growing out now.  Until now, I still have no idea what the stares are about.  Is it because I look too young to be so sick and people wonder what illness I am suffering from?  I wish someone would approach me and ask instead of just staring.  When I walk into the elevator, I just stare at the ground. I can feel people looking at me and wondering what’s wrong with me.  Sometimes I feel like apologising for looking so sloppy, but you know being fashionable and wearing matching clothes is the LAST thing on my mind.  I suffered from itchy skin for so long, my priority during those days was to wear very soft comfortable clothes.  I had to cut off all the lables and any seam that irritated the skin.  Even slight roughness would cause unbearable discomfort.  So during those days, I really couldn’t be bothered if my pants looked like they were pajamas.  I don’t think people understand what all this does to a person’s self esteem.  Try it continuously for a year or more and you will understand why I don’t have the strength to think too much about my outlook anymore.  I just hope that it does not make me a social pariah when I can no longer fit in with what people my age are wearing or how they dress anymore.  Believe you me, no one is sadder than me about the clothes that hang in my closet that do not get to see the light of day.  Even my shoes have been neglected, and with the various feet problems I have, I now wear one type of sandals only.  I guess you can say that the nicest thing I wear on me daily is my smile.  Even my hair which was for many years something that I styled religiously, is now a sad mop that sits on my head, yearning for better days.  I cannot even hide it beneath a cap, or under a scarf because of the headaches and heatwaves I get from doing so. I just have to leave it as it is for now.

So hard to even write about these things because in a way, it exposes all your little petty complaints, fears and discomforts for all to read and know.  And nobody likes a complainer, nobody likes to listen to negativity, nobody wants to know about my sad, lonely existence, but you know what? I am just human.  I don’t think I would be normal if I went through what I did and had nothing to say or express about it.  So I make no apologies for speaking the truth and telling it like it is.

Without me realising it, midnight is upon us, and it’s time to close the chapter to another day and look forward to tomorrow.  All I want to do tomorrow is rest.  If I can rest without any bouts of sickness, that would be something to rejoice about.  I don’t even expect to go anywhere, eat anything delicious, buy anything for myself or get a treat of any kind. I just hope that tomorrow I won’t feel too sick, that my energy will last me for longer than 2 hours, that I won’t feel nauseas, that I won’t have a dizzy spell, that my feet will be tough enough to carry me around the house without coallpsing, that my tummy will digest my food and not give me anymore problems, and maybe I will be able to have my massage treatment for my circulation tomorrow.  If all that goes as planned, it would end up being a good day.  Thank God for small blessings.

 

 

 

 

Living by faith

Recently, in the few weeks that passed, my latest blood test revealed that my red blood count was so low. I remember it being 8 point something before and that time the doc already said I need a blood transfusion cos I could be walking around like normal and just collapse. This time since it was even lower at 7 point something, I was even more concerned.

Obviously this also meant that besides the usual injection, the dose now had to be increased. First an emergency dose was given and that cost me an un-budgeted few hundred RM. Then now the monthly dose has to be increased to so this injection is now going to cost over RM1k, when the previous dose was just below it. On top of that, I need another medication done intravenously which costs about RM600+ incl the equipment used to administer it. But what to do? These are all necessary meds when u look at the severity of the situation. Plus, all these costs are already cheaper than the usual bcos I hv sourced it externally thru other means. So u just imagine how much it really costs overall.

On top of that my blood pressure meds have changed to include 2 types of combined med, and additional 1 other type. All so that it can be controlled at an acceptable level of 150+ which is already high for a normal person, but is to be expected in my case.

I can’t expect a normal person to comprehend all this. A normal person gets concerned even at the slightest spike of anything. In my case, a slight spike is normal and to be expected, a higher spike is when the big guns come in. Even then it takes vey high doses to control and manage things. I wonder how long my body can go on? And obviously I also wonder how long can I continue paying for all these treatments?

So scary to think about it. I just close my eyes and live by faith. There really is no other way 😐

Overloading

So it has begun. The water retention also called overloading has started to happen to my body.

For the last 5 years I have enjoyed the liberty of not worrying about this because there were no signs at all to indicate that I was retaining water. It was always the opposite which was dehydration. For example, I would leave the hospital at 43kgs and come back the next at 42.5kgs. Which means I had lost water and not gained any. While other patients were taking out 2- 4litres of water every time they came for dialysis, mine would be set at 200mls only.

Then suddenly within the last week or so ago, I started feeling extremely bloated. I also had episodes of not being able to breathe and waking up at night feeling like I could not take in enough oxygen. It was a terribly scary feeling when you try to breathe but you feel like the air is not going into your lungs. Then, my legs started swelling. I was shocked! I guess I wasn’t thinking much about it being related to overloading. I didn’t feel as if I drank particularly a lot, and suddenly I looked down and said, “Ok this does not look normal”…… I examined my calfs and ankles and realised that they were swelling. It dawned on me that the issue that most dialysis patients faced had crept up on me and had just begun to happen.

It didn’t hurt at first, but slowly it would hurt if my foot was bent. Then even walking around, bending to pick something up made me feel like the wind had been knocked out of me. I would feel breathless and faint and had to hold on to something while I tried to catch my breath. This went on until I had my next session and I asked to remove more than 1litre of water. After that the swelling went down and I felt a bit better. So this confirmed for me what I had suspected about water being retained as finally having this overloading problem. I also started measuring my 24 hour urine output which fell between 700-800ml. This helps to figure out how much water your body can excrete on its own, and how much more you need the machine to help you do it.

The thing about extracting water is that it is a difficult balance as everyday you may drink and eat differently, so you have to pay attention to what you are consuming, maybe even write it down so that when you go for your next session you can give better information on how much to extract. Too little will cause all the problems above, and too much will cause dehydration symptoms. So your body needs enough to function but not too much till it retains and contributes to problems. Just one more thing to think about and manage.

There is a type of medication called a diuretic that helps or encourages your body to have better urine output, but it sometimes interferes with other medication. I was also told that long term use will make the body “forget” how to do that on its own. The same theory used in anxiety meds and other brain altering signal meds whereby the brain relies on the med and forgets how to function on its own. Nevertheless, they do prescribe it to us and we do take it because I think everyone is quite afraid of the feeling of not being able to breathe and wants to avoid getting there.

Here is a photo of my swollen legs. I don’t know how it compares to others because I usually have very neat ankles and a small circumference all round, so anything more or sudden swelling is obvious to me.

All of a sudden my legs look like they don’t belong to me or they belong to someone fatter/plump which usually does not happen even when I put on weight in other areas. So I knew it was the water.

Anyhow, this was an expected problem in the progression of kidney failure and it is just something I have to learn to work through.

;/