Recipient Stories

Recipient Stories

Recipient Stories
Name: Nozer H Canteenwalla
Age at interview : 48 years
Sex : Male
Background: For more than eight years, Nozer H Canteenwalla endured dialysis treatments three times a week, as he was suffering from end-stage renal disease (ESRD). See how he was given a second chance at life after he received a cadaver organ transplant.
When did you first realize that you were not well?
I was diagnosed with polycystic kidney disorder around June 2003. Actually, it is a hereditary disease from my mother’s side. I lost my grandmother to it and even my mother underwent dialysis for almost two years. As it was a hereditary problem, I underwent a test, which was positive. However, the kidneys were functioning properly and hence there was nothing to worry. But gradually, as I was unable to take proper care of my kidneys, the condition of the kidneys deteriorated when I was just 38.
One day I came from office and realized that I had not used the bathroom the whole day. So I got my blood tests done and came to know that my kidneys had given up completely. As it was a family condition, I knew what to expect.
What was the initial prognosis by the doctor?
I had an infection in my kidneys and the doctor to whom I had gone first was not able to treat it. Due to this, the condition of the kidneys deteriorated even more. Actually, if the kidneys function normally, one could lead a healthy life for 30-40 years even if one has polycystic kidneys. But I had a severe infection due to eating out often. Also, the doctor could not control the infection and I was directly put on dialysis. I took a discharge from that hospital and consulted Dr. Bharat Shah of Narmada Kidney Foundation.
What was the treatment suggested to you by the doctor initially?
Dr. Bharat Shah was able to bring down the creatinine level of the kidney and thus control it’s functioning through proper diet and just a few medicines.
When were you told you would need an organ transplant?
Even with the medicines I was taking and the diet I was following, the condition of my kidneys deteriorated and Dr. Shah asked me to be ready for dialysis. He also asked me to register my name for cadaver organ transplant. As I did not have any family member who could donate a kidney, this was the only option for me. As the awareness about cadaver organ donation in India was very less, it was best to go on dialysis as soon as possible because people who go on dialysis sooner and then go for transplant have a better chance of recovery than those who delay dialysis and go for transplant. I strictly followed everything that Dr. Shah suggested and started my dialysis. I had to undergo dialysis three times a week and I never missed any one session in eight years.
How were you enrolled into the list to receive an organ?
I had to fill up a form and register with the hospital. Once it was registered, the only thing to be done was to wait.
Did you get any indication as to how long the wait would be?
No. There was no such indication. It all depended on the blood group match and also there was not much awareness at that time, so the when part could not be said.
What kind of emotional support did you receive at that time and from whom?
To be very honest, I did not need any emotional support. On the first day I met Dr. Shah, I told him that I am alone. If you are there with me, I am ready to face the facts. I want to be a winner in life. These were my words to him and he replied that we would manage. From that day, there was no looking back. I did not bother to ask for help from anybody. The team of Narmada Kidney Foundation was my support system, my morale booster. But I fought the battle all alone. There was no one to take me to the hospital for the transplant. Honestly, I was focused. As I had lost my mother because I could not find an organ donor for her, I had decided that I would not give up till I get an organ. I was sure to succeed in this. I knew that I was in good hands. So I never felt the need for emotional support.
Did you have any contact with people who had been through something similar before?
No. I did not know who had undergone a similar situation before the transplant.
How long did you actually have to wait for the transplant?
I waited eight years for the transplant.
What were the activities you took part in during the dialysis period?
I continued my life the same way as before during the dialysis. I used to go to work by driving down from Andheri to Fort, go for my dialysis regularly and on Friday evening, I used to go for gliding. I am a glider pilot and I was able to fly even during dialysis. It was one achievement that kept me motivated to come back to the trauma of the dialysis sessions for the next week. I continued enjoying my life by partying, going for night outs, etc. But I always got the consent of Dr. Shah before doing anything.
How did you feel when you got the call that a donor has been identified?
I got the call on May 13, 2011, at 2:00 AM in the morning. When I got the call from the co-ordinator, I was in severe pain and was awake. Dialysis is a painful process and going through it for such a long time, it had become tougher to cope up with. Sleepless nights, pain and suffering were quite common then.
I had the habit of taking my cell phone everywhere, as I did not want to miss that one precious call. It is the psychology of the patients who have waited for so many years that they may miss that call and it would go to someone else.
When I got the call, I immediately went to the hospital where the blood tests had to be done. I think it was around 4:00 AM. Once the tests were done, they asked me to go to the hospital where my transplant would be conducted. I called up Dr. Shah that everything is ready and then the process started.
What did you feel before you were wheeled into surgery?
I was very eager and happy and at the same time very anxious too. The discussion before the surgery was just between Dr. Shah, and me as there were no relatives with me. It was a moment when things were just happening. I felt that my doctor was keener and sounding happier than me. But the wait for the kidney to reach my hospital was a long one. When it could have reached in two hours, it took thirteen hours because the hospital did not have the box to transport it. This had me a little worried, as the kidney should be transplanted within a few hours for the success of the transplant.
What was it like to wake up with a stranger’s organ in your body?
I was told that urination starts as soon as the surgery is done. So the first question I had when I opened my eyes was to know whether it had started. But in my case, it hadn’t. Then Dr. Shah and my surgeon came in and told me that in certain cases, it could take time and that I would need a few more dialysis sessions. I was prepared for that. As I had not known anyone who had undergone a transplant before my surgery, I was not worried about the fact that I would have to undergo more dialysis sessions. It is while going through the dialysis that I found out that such cases are rare. While normally a person is discharged within 10-15 days after the surgery, it took me more than a month to be discharged. By that time, I was in a very bad shape.
What was the postoperative care you received at the hospital?
There was no compromise in the post operative care at the hospital. All the basic things that were required were done.
How did you feel emotionally and physically for the first few months after the surgery?
In my case there were lots of complications after the surgery. I was hospitalized several times. Within a month after my discharge, my body rejected the kidney and I was brought to the hospital. I had skin infection; my ribs were broken due to the immuno-suppressants that I had to take to save the kidney. I had lost a lot of weight too. The battle post surgery went for more than a year and I went through it all alone.
Did you want to know who your donor was and what were your reasons for the same?
I only knew that I received the organ from an old lady. I did not have any interest in knowing anything else. Also, in India, the details about the donor or recipient are not revealed to anyone.
How long did it take for you to go back to your normal life and routine?
Seven months after the surgery, on December 01’2013, I joined back in my office. I was hospitalized thrice during these seven months. But my doctor told me that I could start working and so I did.
Who was your main caretaker during this process?
I had to take care of myself at home, along with taking care of my aunt who is paralytic. I got my support from my doctors, my dietitian and the people at NKF.
What was it like for them emotionally to go through this process with you?
Their words of motivation and encouragement helped me in my struggle. I can say that the fact that I am sitting here talking to you was foreseen by my doctor. He had put it in mind that one day it would happen and I would be able to live a normal life. Mine was difficult case and anyone would have lost hope. But my doctors did not give up, my dietitian did not give up and even I did not give up. They were sure that I would come out of it successfully and it is their belief that I am here today.
What advice would you give to anyone else in this position as well as their caretakers?
My advice would be to not go for a transplant if you do not have a caretaker. I had taken a bold decision of going through the transplant as I had not expected so many complications. During the eight years when I went through dialysis, I had managed alone and I was very fit. But after the transplant, I had no one to take care of me and I became very weak due to so many limitations, constraints and complications. But my only thought was that I had to overcome these hurdles and come out of it without losing the battle.
Would you like to say anything to the people who are reading this interview?
I feel sad that one and half lakh people are waiting for an organ today. The message that I would like to give is that if you cannot do any good deed during your life, at least after you die, do this for a good cause. Donate your organs after you die; you have nothing to lose. You have your whole life to lead it the way you want to. You can be bad, good, happy, sad, make money, do whatever you want while you are alive; the choice is yours. But after you die, don’t let people bury you or burn you before your organs are donated to those who need it. Save lives so that someone can lead a long and happy life.