The only change I have noted in myself over the past two months has been greatly increased swelling in my legs and feeling slightly out of breath on my morning walks. I ascribe this to a possible heart condition and decide to get a whole-body check at Indraprastha Apollo Hospital, Delhi. The results are shocking. From a regular happy functional person, at 44 years of age I am suddenly now a patient with ESRD (end-stage renal disease).
This is certainly the worst aspect of this disease, the way it silently and insidiously creeps up and has already done irreversible damage by the time one gets to know. It is unbelievable news for us as a family. We consult doctor after doctor and are handed the same diagnosis and prognosis; that it is an irreversible disease and ultimately I will need either a transplant or have to be on dialysis.
All my reports are scarily haywire. There is not a single number on my lab values that is anywhere near normal. As I begin to Google, the scenario seems bleaker by the minute. Am I even going to live with these values, let alone survive and thrive? Six years on I know the futility of trying to interpret isolated values. It is the whole picture that physicians look at and these have different interpretations depending upon the age, sex, and other health conditions of the patient.
Thankfully for me I am under the care of the most competent and trustworthy nephrologist that I could have hoped for. The plan of action is to undergo major lifestyle changes and to try and keep the blood pressure under control (completely over the edge in my case) and hope that the creatinine levels stay within manageable limits, with the rider that beyond a certain value it can no longer be managed passively. How much time I have depends on how my body responds to medicines and lifestyle changes.
I am handed a very long list of what seem to only be DO NOTs. It is overwhelming to suddenly know that there are very few things that I can eat and that there is massive restriction on water intake. In my case, I am allowed only 1 liter of fluids (in any form at all) the whole day, which is very daunting in a hot country like ours. From being a hardcore non-vegetarian Bengali, I am suddenly looking at an almost vegetarian regime. And then there are things I must do, like get regular exercise. Kidney disease leads to a lot of muscle wasting and being active is of paramount importance.
Even though the news of having ESRD is terrible and can lower the morale of the most optimistic amongst us, I keep trying to look at the positives, which are few to say the least. This is not the end of the world, I tell myself. A good doctor, a supportive family, an easy blood group, are some of the positives I focus on in my fight against ESRD.
Getting a donor
In spite of following all of my Do’s and Dont’s, I am unable to go on for more than a couple of years before my creatinine levels breach the danger mark. I am told in no uncertain terms by my doctor that it is time I began seriously looking at prospective donors in the family. This turns out to be the most harrowing chapter in my journey yet and definitely the most challenging.
The definition of ‘family’ at Apollo is very restrictive and I am left with only three possible donors to choose from: My 18-year-old only child, my husband, and my 70-year-old frail but tough mother. I do not even wish to bring my daughter into consideration and hence I am left with either my husband or my mother.
Meanwhile my physical symptoms have begun to manifest in different ways. I am beginning to experience unexplained rashes over my body, urge to scratch, a constant metallic taste in my mouth, marked nausea at times (all due to build-up of toxins), terrible weakness (because of low hemoglobin resulting from ESRD), and occasional lower back pain. And then there is bloating and swelling that is most apparent in my legs and on my face, a result of fluid accumulation. I also realize I am snoring loud enough to bring the roof down, again due to the fluid build-up.
My doctor decides it is time to begin me on dialysis while we get searching for a donor. I am admitted for getting a temporary access made for dialysis. It is assumed either my husband or my mother will be found fit to donate and it won’t be a long wait.
As is usual in India, as a patient I have no idea what I am supposed to be undergoing. Very casually I am wheeled into an anteroom right next to the dialysis unit, asked to lie down on a gurney and look left and keep still, and suddenly I feel a cut being made on my neck followed by dabbing, insertion of something, tying up loose ends literally, and I am told it is done, whatever the ‘it’ is. Only later I find out that a venous catheter has been put in with a part of it left hanging out and the whole thing heavily bandaged. It is literally a pain in the neck.
The next day I am taken for my first dialysis session. I am only told that the first one will be for 2 hours and all subsequent ones of 4 hours each. The dialysis unit at Apollo is busy to the extent they have patients hanging onto beds to get their turn. Naturally there is no one who has time to explain what a dialysis involves, like tubes carrying my impure blood to a dialyzer, another set of tubes returning purified blood to me, strengths and concentrations of dialyzing solution, dry weight, etc., nor the possible nausea or the sudden dip in blood pressure at times. All of this I will eventually figure out myself over time.
There is bad news on the donor front too. Both my husband and mother have failed their tests. I need to look elsewhere and soon.
As my options of getting a kidney from within the family fizzle out and the financial drain of thrice-weekly dialyses sessions hits home, we get desperate enough to decide to go against all principles that I hold sacrosanct. From being one who used to feel revulsion at the thought of procuring an organ from another human being, a complete stranger, to save one’s life, I am now willing to set those values aside and do exactly that. I figure out a place where buying a kidney is well established and lots of people have returned with successful transplants after having found willing donors. But in the course of my journey I’ve come across many patients who’ve become friends. And I hear horror stories from those who’ve already been on that route.
A friend got in touch with one such ‘broker’ through an acquaintance. Once a financial settlement was made and a token amount e-transferred to his account, the tout assures my friend that he was in competent hands, that he has done this many times already and has a lot of willing donors ready and waiting for my friend.
After spending nearly a couple of lakhs on the kidney search including getting a prospective donor tested for everything imaginable as also paying the tout for pushing papers through government channels to allegedly beat the red tape, it finally culminates in the donor being a match with my friend. The cross-match testing is the most crucial of all since it is at this point that the donor gets finalized and one can move on to paperwork, which they were warned can be long and very tedious.
At this point though, my friend is dealt a body blow when he was told one day that his prospective donor has suddenly ‘died ’. Obviously the broker had gotten hold of some other patient family who are more desperate and hence willing to shell out more, and just when he had his hopes up, it is all over. It is not only a big jolt in terms of the money and time lost, it is the broken hopes that hurt the most.
After hearing this story, we decide to abandon any such thoughts and stay in Delhi and speak to my doctor once again for any possible way in which my husband can still donate with the slight problem he has with his own kidney.
My doctor tells us that we should go in for further tests for my husband and since the problem is minor, we are advised to take it further. Sadly and expectedly, we hit a roadblock again at the cross-match testing. I am talking of a time when swapping donor kidneys between families had still not gained much currency. It looks like all doors and windows are closing on us. Since there is not much to be done, we decide to embark on a new donor search in Kolkata again in a couple of months. We are told of various other cities, countries even, from where people are successfully getting kidneys but the logistics are pretty daunting.
In all of this time it has completely evaded our minds that my name has automatically made its way into the waiting list at Apollo. Even if we did remember, where was the hope of getting a kidney? People just do not consider donating organs. Much before I found myself in this situation, I have always wanted to donate all my usable organs. It always seemed to me criminal to take functional organs to the grave. We resign ourselves to a long wait and endless dialyses sessions in the near future.
And then one evening, in July 2014, when transplant is the last thing on my mind, I get a call from my doctor, a call that is set to change my life forever. There has just been a donation at Apollo and I am asked to come immediately for a possible transplant, with the caveat that there still is the issue of a cross-match test.
Four years out from that day, I still get goose bumps when I think how lucky I got. I have to admit that when I was first diagnosed, I did ask ‘why me’. However, my outlook underwent sea change when I saw the spectrum of patients around me and realized how blessed in so many ways I actually was in spite of ESRD. Also to be confessed here is that I did not once think ‘why me’ when miraculously destiny gave me a shot at transplant, I passed the cross-match test, and finally underwent successful surgery. I guess it is human nature after all. The thankfulness came later and each day since surgery I have been immensely thankful for the unknown family that gave me a new lease of life.
I realize that very few people will actually be as lucky as I am mainly because organ donations are so very few and far in between. There is such an immense demand-supply gap and patients and families get so desperate that touts and brokers are thriving. A single person can touch and transform so many lives if the family decides to donate organs. Even now as I am documenting this, I ask my husband if he remembers any formalities he had to do in the process of me receiving a kidney and he tells me nothing stands out. Just a slew of signatures and we were all set. The whole process is so easy and so transparent it is beyond belief. Only the family of the deceased has to take this call.
I know each person has his/her take on organ donation and I respect that. My experience has created a body of willing donors within our family. I hope to see more and more people join in the noblest act of giving that any human can ever do.
I turned 50 this March, 2018. I am looking at completing 4 years post transplant, which is a landmark in itself. The post-transplant course has its own challenges but it is a wonderful new life. For those of you out there who are dealing with ESRD, here are some pointers that I can think of:
- Do not lose hope, do not focus on negatives. A positive mindset albeit tough, goes a long way to defer dialysis or transplant.
- Always count on family and a core group of friends for support in every possible manner.
- There will be a huge drain on finances, whether it is dialysis or transplant. There are many places where one can get dialysis at discounted rates. Make sure though that there is no compromise on hygiene since the process involves direct contact with blood.
- Google is to be used only for very basic queries like finding good places for dialysis or transplant, physicians, costs involved etc and not to try and interpret lab reports. One can get very easily convinced of one’s mortality if Google search results are to be guiding factors.
- Medicines prescribed pre and post transplant generally have much cheaper generic versions and efforts should be made to procure the same.
- Keep exercising as much as physically possible, eat well within the constraints. And it is perfectly okay to cheat on the diet on rare occasions, though one must strictly adhere to water restrictions. Of course once dialysis begins, there are no food restrictions and one is in fact supposed to eat a high-protein diet to compensate for losses during dialysis.
- It is completely okay to feel the blues and indulge in self-pity at times. Things have a way of looking up eventually. Remember there will be good days and bad days and a few really bad days, and it is at such times that friends and family play a crucial role in boosting one’s morale.
- The four hours of dialysis plus getting oneself hooked to and unhooked from the dializer can seem a very long time but this time should ideally be used to introspect, think good thoughts, catch up with family, engage in inane chats on WhatsApp groups, listen to music, read books, in short do anything to take one’s mind off innumerable issues that are bound to crowd the mind.
- Always remember that the immediate family goes through lot of stress and worry along with us, and it is a good idea to stand by them as they stand by us through our difficult journey.
- Do your own bit to encourage organ donation. Keep the faith, always.