(This series describes the run up to kidney disease, the diagnosis and my first transplant)
11th July 1997, Chennai, India
"Counter Number 4, please", the magical words of the Consular Officer at the US consulate! No questions asked. He just looked through my papers and said this. This meant I was being given my student visa for pursuing my master's in the US. "Thank you sir!", I said and rushed over to the queue at counter #4 to pay the visa fee.
As I was leaving the consulate building, there was an extra bounce in my step. I was extremely happy. This was the end of a long journey. A journey that enabled another journey. I would go to the US to study. Great opportunities lay ahead.
I saw my father at the gate waiting anxiously to know what happened. I signaled with a thumbs up sign. He was relieved. The tension that accompanies the whole visa approval process not only engulfs the candidate but his immediate family as well. It is a big step in an individual's life. One that dictates the next few years of and possibly his entire life.
We celebrated that evening by going to my favorite restaurant in Chennai called "Dasa". Some relatives in Chennai joined us.
The next day, we headed for Hyderabad.
13th July 1997, Hyderabad
My brother Prasan had given a small ad in the local newspaper to celebrate another event - my winning a gold medal for topping my college exams! So, a few people called and came home to congratulate me for that rather than the visa!
I started preparing for the move to the US. The first thing I needed to do was to learn how to cook. Guess what I started off with? Dal Bati! Probably one of the most complex dishes! I explained to my mother that though I was learning the whole dish, I could actually make it in parts or try it on a Sunday!
14th July 1997
I went to the Institute of Preventive Medicine. I had to get vaccinated for Hepatitis B, Typhoid, Measles, Mumps and Rubella. This was a standard thing which everyone who was going to the US did. I got the vaccines. I was told that there could be some fever as a side effect.
Towards evening, I did get feverish and took it easy.
I started planning a small party for a few friends to celebrate the gold medal and the visa. The next morning I went to my college where I was scheduled to meet up with a few friends and plan the party and invite the guys. I was feeling a little queasy and attributed it to the vaccines.
However, unknown to me, there were some changes that were taking place inside me. These changes did manifest in external forms. But I had no clue on what was happening. My blood cells had started breaking. My platelet count started decreasing and my nephrons, the building blocks of my kidneys started failing.
I went ahead and booked my tickets for the US.
By evening the nausea had worsened and I started throwing up. We were wondering what was happening. To rule out anything serious, we went over to our family doctor Dr. Kirit Parekh. My aunt, who is a doctor was in the loop by then. They decided to get a few tests done.
So, we went to the lab and I gave some blood samples.
The next day, the reports came. The doc at the lab was known to my father and my aunt. He asked me to wait outside and called my father and aunt in. I was a little perplexed.
When they came out, I asked them what was happening. They said there was some problem with my kidneys. Aha. So? They said we would need to see a nephrologist. Sure. My creatinine was 7 at that time.
I had no clue what that meant. Well, I knew that my kidneys were not working. Something temporary, I thought. Some medicines would do the trick.
We fixed up an appointment with a nephrologist, Dr. Girish Narayen recommended by Dr. Parekh.
When we went to meet him, he saw the reports and asked for some more tests. He also asked me to restrict my fluids to a liter a day. I remember wondering if 1 liter was easy to restrict to! He also said that I would need a kidney biopsy. I remember my aunt reacting with shock when she heard that. I again had no clue as to what that meant.
I was asked to be admitted to the hospital. The journey from there to dialysis was short. A few days I think.
I also got a biopsy which confirmed Hemolytic Uremic Syndrome.
I was continuously told that I had Acute Renal Failure. The kidneys had suddenly shut off. And just as suddenly they would revive and start working. I had to simply wait. In the meanwhile, they would give supportive treatment.
During every dialysis session, I would ask my doctor about when the kidneys would revive.
"Its very close now, Kamal. Maybe another week."
"You said that last week too"
"Yes, I know but its difficult to predict this accurately."
The routine went on.
"Another few days"
"A little more time"
"One more week"
That week never ended.
In September 1997, my doctor decided to try a course of steroids. So, I started taking Prednisolone.
My kidney function started improving. The gaps between dialysis sessions could be increased. My urine output also increased dramatically.
At that point, one Sunday evening, I went out with my family. It started raining quite heavily. By next morning I had caught a bad lung infection (infections are easy to catch while on steroids) and had to be admitted. The infection was treated but my renal function declined and I was back to square one.
During this entire period, we would hear from different people about different alternate therapies. I tried almost everything. Each therapy would come with its own set of diet restrictions. Nothing worked.
My hopes of a cure from this problem would be greatly increased. And then within a few weeks gradually disappear.
Around November 1997, someone anonymously sent us a newspaper clipping that featured a businessman in Bombay called Dr. Gupta (not a medical doctor). He apparently chanted a mantra given to him by a 'sadhu' (ascetic) many years back into a glass of water. People with kidney diseases who drank that water everyday apparently were cured of their kidney ailment.
We were all very excited. This looked like a godsend. The anonymous letter. The aura of a mantra. The promise of liberation.
I left for Mumbai in December 1997 and stayed with another aunt and her family. Every morning I would go to Dr. Gupta's office and drink the charmed glass of water.
I will never find out the truth about that 'treatment'. All I know is that it did not work for me. After 2 months of drinking the glass of water (I enjoyed this part though!), my creatinine showed no sign of reducing and my urine output showed no sign of increasing.
After a few weeks of this trial, the t-word started being discussed.
A transplant was, after all acknowledgment that there was no hope for reversal. That we had given up on the week that Dr. Girish Narayen had promised.
By March 1998, we had all reconciled to a transplant and started the process of a live related donor transplant. My mother was going to donate. In the meantime, Dr Girish Narayen had to go abroad and put me onto Dr. J. C. M. Shastry who was one of the senior most nephrologists in the country.
The whole process lasted a few months. Finally, we decided on November 11th, 1998 as the date of the transplant.
I was extremely anxious. Was this the beginning of a new dawn? Were all my troubles finally going away? Will I never need dialysis again? Were fluid restrictions going to become a thing of the past?
An important part of a transplant is the post surgery medication. This involves a set of medicines including immunosuppresants and steroids. Basically these medicines prevent rejection of the new organ by the body.
Cyclosporin is the most commonly used immunosuppresant. Unfortunately, in Hemolytic Uremic Syndrome (HUS), cyclosporin is suspected to cause recurrence of the disease in the transplanted kidney. Well, no one can say for sure. But there have been studies that have found a link between cyclosporin and recurrent HUS. Again, there have been studies that demonstrated that there was no link.
So, its extremely important to get the choice of immunosuppression right. I did a lot of looking up on the internet and took printouts of all the articles to Dr. Shastry.
After a few days, I went to him to discuss this. He asked me what I thought we should use. I was a little surprised. When your doctor wants to know what you think on such an important decision, it could mean that he wants to involve you in this. It could also mean something else - he does not know. And that can be a heck of a lot worrying.
Anyway, we decided that we would use cyclosporin. Because of inconclusive evidence to suggest the contrary. I was a part of that decision.
My mother and I got admitted to Kamineni Hospital a day before the surgery was scheduled.
I had dialysis that day. I was thinking happily that that was my last dialysis. I would never have to undergo the pain of the 2 thick needles in my left arm.
My doctor thought I would have a sleepless night and gave me some sedatives. I slept quite well.
Finally, the morning of the transplant came.
I was wheeled into an Operation Theater, my mother into the adjoining one.
The two main surgeons (a husband and wife pair) started working on us. Before the surgery, a ventilator was put through my mouth to ensure proper breathing since I was given general anesthesia. Within a few hours, my mother's kidney was transplanted to me. No, mine were not removed. This is a popular misconception. Almost always, during a transplant, a third kidney is put into the recipient and it is not a replacement. Almost instantaneously, urine is produced to signal functioning of the new kidney.
When the surgery was complete, I was moved to a transplant care unit. There, the doctors suddenly realized that I was not recovering from anesthesia. There was panic all round and the anesthetist was summoned urgently. They tried a cocktail of drugs to get me out of the peaceful slumber I slid into. Since this could potentially cause cardiac issues, a senior cardiologist and a group of other specialist were called in.
Seeing all this commotion, my family was terrified. The entire pantheon of different religions was invoked. Mantras were chanted incessantly. About a month back, I myself had seen another transplant recipient go into this stage of 'not recovering from anesthesia'. I had seen the group of doctors lean over his body trying hard to get him back. They did not succeed.
I was luckier. Within an hour or so, I came out of my stupor. Still unconscious but stable.
When I came to, I felt a sore in my throat and was coughing a little. I found myself in the Transplant Care Unit lying on a bed. A nurse was there in the room. I was dying to know what had happened during the surgery. General anesthesia literally takes away time from you. It was a gap in my life. A blackout.
"Sister, how did the transplant go?"
"It went very well. You are perfectly fine!"
"Thank God!", I thought to myself. I asked her about the sore in my throat. She said that was ok and it was due to the ventilator that was used.
I was peeing gallons through a catheter by now and they had also put me on IV fluids.
For the next few days, the routine continued. Blood tests, visits by the nephrologist and the surgeons. I was slowly started on a liquid diet, then moved to semi solid and then finally solids.
After about 9 days of the transplant I was moved to a private room. All this while, my blood tests were all normal.
On day 11 post transplant, the nephrologist, Dr. Dakshinamurthy, second to Dr. Shastry, came to my room in the morning.
"Your creatinine is a little high. I have asked for a repeat test."
I was scared. This should not happen. Maybe its a mistake. Let's wait for the repeat test.
A few hours later, I learned that the repeat test showed the same value. Now what?
The docs returned after a while. The decision was to give me a massive dose of steroids to try and force the kidney to behave and get a biopsy to find out what exactly was happening.
Steroids were given on 3 successive days. No change.
By the 20th day post transplant, my creatinine almost touched 10. Dialysis had to be started. This was a big mental setback. For me and my family.
The biopsy report was out by then. Recurrent HUS, they concluded. Cyclosporine was stopped immediately.
I was back on regular dialysis.
They tried different things to try and bring the kidney back. Nothing was working. My biopsy slides were sent to different doctors and specialists in India and the US. Nothing useful came out.
After about a month of the transplant, during a dialysis session, Dr. Shastry came to my bed and said, "We must give up now."
That was the verdict. It did not come as a great surprise to me. But that was the end of it. Officially.
How did I get this disease?
Was it due to the vaccines? Many others took them. Was it due to the antibiotics and pain killers I had taken a month or so before I got this? Nothing that dozens others haven't taken in the past.
I had had a disease called ITP (Idiopathic Thrombocytopenia Purpura) in my childhood which was treated successfully with steroids. Could this be linked to the current disease? Possibly.
Medicine has made a lot of progress undoubtedly. But we continue to grapple with the human body and its mysteries. There is still a humongous amount of knowledge that waits to be discovered.
Having a chronic disease is painful. For the body and the mind. Not knowing how and why it struck is more painful. What was the event that triggered this? How I yearn to know this!
I have written this series not because I am depressed or sad. It is just for people who want to know more about the process and events that one has to go through with such a disease.
I have taken this disease head on. Researched the internet. Found out all I could. Talked to the doctors. Talked to the specialists. I think I have done a good job dealing with this disease. I work full time. I work harder than anyone in my family.
I have not let the disease overpower me. I know of people who groan and moan about their condition. I don't. I live my life as fully as possible.
Am I always cheerful? No. With this kind of a problem, it is natural to feel sad or helpless at times.
I ensure that it remains only a part of my life. I ensure that it does not become my life.