Anjali Uthup Kurian
Transplant, the reality
Life is full of ups and downs and as David Michie says in his book- The Dalai Lamas Cat, “It is not so much the circumstances of our lives that make us happy or unhappy but the way we see them.”
It does sound easy to write and read but I’m sure in the back of your mind you will never think that life will make you face anything out of the ordinary. So we don’t’ know that we would not be able to make us react with a plethora of emotions. But as you turn a different corner, your life could actually change so permanently that your past will seem to be a memory.
The only thing we knew as a family about organ donation was that 26 years ago my Mamama (grandmother) had donated her eyes. We knew nothing more and somewhere deep in our hearts her act always kept us inspired. You never really think of needing an organ donor. Maybe sometimes it can cross your mind to donate an organ like my grandmother did.
You never meet people by accident. They always come into your life for a very definite purpose. The purpose is only revealed later. And that’s exactly where my story begins. And it was a startling revelation.
On a regular day at an organ donation awareness meet, I ran into Dr. Philip. G. Thomas who was heading the Transplant unit at the time. We kept in touch and over time I realized that he had written a book called TRANSPLANT STORY, a book about the Miracle of life and how the Donor is really the true hero, in a transplant case.
After reading the book I told him that I was deeply moved by the book and was ready to do anything to help organ donation. Little did I know that the very next day my brother was going to be diagnosed with IGA nephropathy! And that 90% of both his kidneys have stopped working! Incredulous as it may sound that’s exactly how it happened. Our world was spinning without stopping. My family didn’t know what hit them as it does for most families.
My brother had to be admitted into hospital and a battery of tests was performed on him. The first set of test determined that my brother needed to get onto dialysis. For that he needed a fistula. But the fistula fitted on his left arm didn’t work so there was a temporary catheter in his neck. This then got converted into a permanent one.
The next step was a set of biopsies that revealed that transplant was the only step forward. Reading a book and getting inspired to help is one thing but when that story becomes your reality it takes life to a different level totally. Transplant Story of course deals with a liver transplant through a Cadaver Donor. But the process, the pain, and the poignancy are still the same.
Learning about CKD:
Countless hours of sitting, outside the Dialysis room makes you gravitate towards fellow “bystanders” the term used for people like us who wait for their loved ones outside. (Caregivers would be a better word and more appropriate though.) Guided by the TRANSPLANT STORY, while sitting I chatted with fellow bystanders that actually helped me understand a lot more about my brother’s condition.
So my conversations with Mary Teacher, Maya, Usha and Leena all revolved around the effects of urea, potassium, creatinine and sodium on a dialysis patient. Each kidney patient had some sort of a kidney failure but the causes were different. Our conversations ranged from IGA nephropathy to Ayurveda, diabetes to Hypertension and an amalgamation of medical jargon, which at that time was far too difficult comprehend. But, as caregivers we were united by common concerns and experiences, so there was a desire to know ‘more’.
Conversations moved onto exchanging notes on how to leach vegetables. How much water is the right amount? Is itching due to a phosphorous build up? Or was it just a side effect of dialysis? What is Heparin and how many liters of filtration happened, to whether the dialyzer was changed every time. Was sleep a problem? And anger a side effect? Oh God, the lists were endless and exhausting.
But all these discussions gave us answers probably no book or medical journal could have given us. The reason being it was the advice and information from likeminded people who had only a single purpose in life and that was to enhance the quality of life of the family member who was ill. Most bystanders didn’t like asking questions but warriors like Leena, Maya, Toms father and I, we always had questions. But we got lucky; our doctors were concerned and always ready to support our growing knowledge and of course telling us when we were fumbling. Countless coffee sessions with Doctors and of course the numerous support groups on the Internet also helped me greatly. Face book that faces a lot of flack was actually quite a turning point as the communities involved in transplants were always there to share and discuss issues.
It is well known that a patient cannot go through all this on by himself or herself. They need a ‘Champion“ of sorts to help them face the trauma of a near death experience especially in end stage disease needing a transplant. But these so called ‘CHAMPIONS’ also need support and truly the amount of people that step in does add up to a personal little ‘village’.
Once we had a transplant scheduled, it was important to understand the post transplant issues. I became aware of the implications of being on immune-suppressants meant immunity was compromised, steroids and it’s role, to watch for levels of TAC, relevance ultra sound scans and constant monitoring meant lifelong responsibilities.
My brother was not married. My parents did have a home here, in Kerala but were basically settled in Calcutta. So a very secure safety net had to be woven around getting our family to embrace the trials and eventualities of Transplant. I took it on myself to be the ‘Contact person’ for everything. From being in the hospital on alternate days for dialysis and managing home on the other days, while my Husband just took over the responsibility of the children and home, I was able to manage it well.
To my surprise I totally busted the myth that a mother being at home was directly proportionate to good results in the class 10 exams. My daughter managed her entire 10th with me not being there and made us proud coming out on the top with a perfect 10!
My parents were able to deal with my brother’s brush with CKD better, because the faces of their grandchildren kind of cushioned and took the sting off from the horrible reality that they were facing.
My brother and his health:
The days at home meant friends and relatives poured in to see my brother. A decision was taken to make the home environment a happy place because apparently smiling in the time of adversity “boosts your immunity’. So it was a happy home and my brother was slowly getting stronger with exercise, love and a controlled diet to run ‘the biggest marathon of his life’.
As my brother lay in the dialysis room or post surgery in the isolation, he would have dealt with his own demons. There was really no way of knowing what was lurking in the corners of his mind…but I decided I to keep asking.
The day of the surgery was fixed as the 15th of October. And slowly things fell into place. I recall the time we faced a new challenge, of finding a donor. I could be one as my blood group matched. So if not me for any reason, who and how? These times it felt like it was a roller coaster ride that you remember getting on to, but when you got off you were unable to fathom ground reality.
The process to register on the Cadaver lists in the hospital and on KNOS (Kerala network of organ sharing) had been another aspect to be handled. As I dealt with one, there was more to learn – about blood tests, antibodies, plasmapherisis, altruistic related or unrelated live donors or was it going to be a Cadaver, so all around these questions were bounced off. A “negative result” added to our grief. Then what a relief! I learnt that in medicine all reports having negative is a good sign, except in the case of pregnancy!
My brother’s IGA nephropathy was an aggressive one, so till it became dormant though active dialysis he was unable to go in for transplant. If he were to receive a cadaver kidney, frozen biopsies would tell us whether or not the retrieved organ would be suitable.
Live donor meant- blood tests, full body checkups, and scans of the kidney was the way forward. These labs would rule out antibodies, disease and tell us the size of the kidney; its filtration rate and how many arteries were involved. Now if I thought this was an alien language, the paper work was going to shock us into oblivion.
A file with medical and personal details of the donor and recipient was in a file. Police verification, Panchayat approval and no-objection certificate from the family found it’s way into this file.
Then the task of facing two committees! One at the hospital and one at the district level to make sure everything were in order and legal. Being in Kerala of course was a blessing because people and systems here are more pro active and we are dealing with an educated population.
And the transplant finally happened. My brother got an altruistic live unrelated donor.
Rooms at home had to be sanitized and learning to say “NO” became my new mantra so we maintain hygiene and a safe atmosphere. After the transplant he had to take medicines every day at the right time. The donor who also risked his life was up and about in 3days. We made him stay for an extra 3 days so that he could be stronger and be in better control. That also assured his wife that he was truly very important to us. The donor had to deal with not working for 3 months.
But for my brother the saga continued for 10 months. The feeling of not being in control and valuable played heavily on his mind. However the love and happiness slowly cleared out quite a bit of those insecurities. And now he’s busy playing Golf as I type on the lush greens of the Royal Calcutta Golf Club during the enchanting Kolkata winter.
Cadaver transplants are crucial
During the process of acquiring details, I realized how important it was to have a donor. Cadaver donors (deceased) are truly a blessing. However, many stigmas are attached by society in the name of religion. For me however, after your time if you can give your body parts, there is no better karma. Then of course, there is an argument about brain dead people and how they are being perceived. Many people believe their loved ones are declared brain dead so that the hospital can actually add one more successful cadaver case to their list. But this is not true. The hospital follows the rules for concluding a person brain dead. Doctors round the clock to look after such cases. Many departments from critical care to the Neurology along with surgeons and nephrologists work together to do the right thing.
The transplant coordinator of course is yet another unsung hero, who actually goes out there to help and explain to the (nearly) bereaved family, how their family member could actually save so many lives. Emotions run high during such dialogues. Questions keep cropping up. There’s always a lingering doubt of the person coming out of this condition. Therefore during our lifetime if we pledge to become organ donors and our families are made aware of the decision, I feel the trauma would be less.
It will be interesting to know that a cadaver donor makes it possible for transplantations of organs such as heart and pancreas, and combinations of organs (like simultaneous kidney – pancreas; or simultaneous kidney-liver) be possible. For these organs, live donors have no role to play.
Thinking about 100s of people dying because they haven’t been transplanted at the right time becomes the basic reasoning for signing for organ donation. There are truly so many lives to be saved.
To add to all the issues around the disease this was one side no one realizes till the bills starts hitting you. We were lucky that my brother’s company had given him total insurance but still it was at times ‘crippling and catastrophic’. Day to day expenses! Logistics of travel! Follow-ups with doctors and checkups all of these added up. It occurred to me that many people were not adequately provided to meet financial challenges.
Finding my peaceful moments
There were times when I actually went on my knees and said, “Thank-you once again God as it could have been worse”. As a family we had decided not to ask the question, “WHY US” because it would get us no answer to help us deal with the problem. Instead there was a chant, “TRY US”. When finding a donor was a challenge, I truly believed once again in the power of prayer and God Almighty. And truly, what doesn’t kill you only makes you stronger.
It was not easy but definitely becomes easier when you don’t think illness as a punishment for your sins. Being thankful, being well informed with a great set of doctors to rely upon, made everything worthwhile.
Smiling at the guards and engaging in conversation with the canteen staff, cleaner, dialysis unit technicians and even the barber Mohanan Cheta gave us insight and hope and not to forget the increased population of our village who rallied around us.
Our tryst with destiny and the transplant world, through my brother’s kidney transplant motivated me ‘more’ to be an organ donor. Though I had already made up my mind after reading Transplant story, and my daughter Ayesha’s school campaign on organ donation, here was yet another reason to strengthen the purpose.
Sitting in the hospital for months I got to see firsthand how a bereaved family put away their sadness and actually embraced happiness and joy when they realized their deceased family member through death, had given life. That emotion I saw is something probably one experiences at childbirth. Will it work out right? Will it work out wrong? All recedes into the background because life is precious and worth a fight.
For me, my brother’s altruistic live donor, Subhas Chetas (older brother in Malayalam) and many such donors including the cadaver donors are real heroes, who in my eyes are close to God. Of course the doctors who make sure everyone gets their share of life. It’s not necessary for all of us to burn our fingers to know fire. But learning from others who saved a life through a transplant should be reason for all of us to become organ donors.
Science has no substitute for courage” and to that I add, “Courage can change the face of science…so become an organ donor.
Anjali Uthup Kurian