Chapter 8: Preparation for a Life Changing Operation
Meanwhile not only my office colleagues but my friends from school and work had gotten to know about my kidney failure thanks to the pictures from hospital that I had uploaded onto Facebook.In fact I had two volunteers who had come forward to donate their kidneys. One was my office boy whom I refused immediately as he was working in my office and I had no intention to take advantage of such a relation and one was my childhood school classmate. Initially I refused him too, but he was very insistent and almost spent an hour trying to convince me that I should take his kidney. He said there was no harm in at least checking with the Doctors in the hospital on the procedure and at least we could start with the initial tests. When I mentioned about him to the surgeon, she mentioned that the legal process would require me to show proof of knowing each other since childhood in terms of photographs and other evidence. I thought the process would be tedious so I let it be.
However of late my bloated kidneys that had led to my swollen stomach were my main cause of discomfort and I asked the surgeon if something could be done about it. She said that the surgery to remove that called bilateral nephrectomy would be very complicated and life threatening. I told her that without that how could I have a transplant if I ever decided to go for that since there was hardly any space to put the third kidney. But the Nephrologist who had just then come into the surgeon’s room to discuss some patient’s case said that there was no need to remove the kidneys at all in my case. He also reiterated that such a surgery would be extremely risky. They tried to explain that every surgery can go wrong and there is no point in going in for such a major operation unless absolutely essential. I was not satisfied with their reply so I decided to get a second opinion. I went to the large hospital near my house and showed the Nephrologist who was consulting for my sister undergoing dialysis there. He examined me carefully and he said that my kidneys were grossly enlarged and a nephrectomy was absolutely essential if I ever wanted to go for a transplant. If not bilateral, a single kidney would definitely have to be removed. Also, he said that no Doctor would perform the bilateral nephrectomy unless I had an approval for a kidney transplant.
Till then I had not seriously considered the transplant option since my sister had been on Dialysis for the last close to three years and had got accustomed to that life. I had also mentally prepared myself for that life. However the enlarged kidneys did put a twist to the whole thing. Although my kidneys had failed they still performed some functions and they were still producing large amounts of urine. The urine was mainly water and toxins were not being effectively removed, but at least I could drink water and fluids freely without bothering about a fluid overload. Removing both kidneys would mean dialysis almost every alternate day unlike my sister who was getting a six-hour night dialysis twice a week. Also I had read on the net that in US in some hospitals they did simultaneous bilateral nephrectomy and transplant. But in India it would mean two separate surgeries and both major ones. I also realized that Bilateral Nephrectomy was very rare and very few surgeons in India would be competent to do it.
When I mentioned about the above to one of our relatives in Kolkata, he told me about a surgeon that he knew who had performed close to 600 Kidney transplants there. He said that this surgeon was really good especially for Nephrology patients and that I should come over and meet him. The surgeon was attached to a well know hospital in Kolkata.
Meanwhile for the first time my mother spoke to her relatives in Kolkata to check out if anybody would be willing to donate kidneys to me and my sister. I must mention here that my mother is one among 9 sisters and 1 brother and the further generations together make the extended family of our relatives from her side quite large. Also unlike my father’s side where this kidney problem came from, my mother’s side is quite healthy and virtually has no health issues and has a high longevity. Once the word spread we got many calls from our relatives out of which some of them had seen us only when we were kids volunteering to donate their kidneys to us. Luckily most of them had the A+ blood group, which was what everyone in our family had including my mother and sister.
My sister and I decided to go to Kolkata and meet the particular surgeon recommended and also initiate the process for our kidney transplant. We booked our flight tickets in the second week of May 2011. On landing there we went to stay at one of our relatives place. We decided to go to hospital the next day along with our volunteer kidney donors. My sister decided to go with a cousin sister who was married and had two kids and was close to her age. I decided to accept the kidney donation offer from my first cousin brother who was a little younger to me. He was also married and had kids.
The next day at this large private hospital I was surprised to see the large crowds of kidney patients waiting outside the chamber of theHead Nephrologist to meet him. Unlike Delhi, the population in Kolkata is so large that Doctors see maybe 150 patients a day and I guess this explains their huge experience and hence their ability to handle complex cases like mine. After a very long wait when finally our turn came, the Doctor was friendly and put us all at ease. He met and examined all of us including me my sister and our cousins who were the donors. He explained the whole process for kidney approvals for non near family members and also wrote down a battery of tests that had to be conducted on each of us before the hospital gave its approval to us for the transplant. Once the hospitals approval would come, all documents needed a government approval and he explained that legal process as well. He also explained the risks involved in the surgery, which is the same as with any large surgery. He also recommended us to the surgeon about whom we had heard so much about. The Nephrologist told me that many bilateral nephrectomies had been done in that hospital and that I need not worry.
The following week went in getting all the tests and meeting the surgeon. He was really busy and came down to the OPD in his OT dress in between two surgeries. He also examined all of us in detail. He told me that although complicated, he did not see much of a problem with my bilateral nephrectomy. He told me not to worry and that I would feel much better once these enlarged kidneys were removed. In my sister’s case, he saw that although she also suffered from ADPKD, she did not need to have her kidneys removed as they were only slightly enlarged and there was enough space to fit in the donated kidney.
There are three main tests to check for kidney compatibility. One off course is the blood group match. The second is the HLA match. A full match in this would mean no rejection. However the immunosuppressant drugs available in market today make it possible to have a transplant between people with less than a perfect match. The third is the crossmatch test. It basically checks that the recipient’s body does not have donor specific antibodies in the blood that can reject the donor kidney. Apart from these main tests, the donors undergo a lot of tests to check if their kidneys are in perfect condition. Also both the recipient and donor need to undergo tests to check if their heart condition and overall health is good enough to undergo such a major surgery. Thankfully all of us cleared all the tests and we heaved a sigh of collective relief when it was done.
Once the hospital paperwork was completed, my relatives helped us out with the legal paperwork before submitting the documents to the state government for their approval. Since this process was going to take some time we came back to Delhi. Around mid July there was a final interaction with the government authorities before the approval for the transplant was to be given. Our relatives went this time to represent us. I was feeling too unwell to travel again just for some bureaucratic procedures as my Creatinine had crossed 5. My sister had problems getting dialysis in Kolkata and preferred to have it in Delhi. Hence we could not go personally. Thankfully the approval came thru without a hitch. But we were in for a shock when we called the hospital to get the OT dates. The hospital had such a long waiting list that the first available transplant date was only a month away. Since it would mean both my sister and I traveling to Kolkata, I decided to have my Bilateral Nephrectomy around the same time. In fact it was decided that I would have my Bilateral Nephrectomy first and within a week of that my sister would have her transplant. The Doctors had told me that I could have my transplant within two weeks of the Nephrectomy. So hopefully within a month we would be thru with all the surgeries.
After coming back to Delhi from our trip to Kolkata I had got back to my business and my sister had got back to her job. Once the OT dates were fixed, we started making arrangements for a long trip away. I paid all my tax dues, filed my returns, organized funds for the multiple surgeries, and tried to foresee and cover whatever I could that might be needed in my absence. My sister also decided to leave her job as the break was going to be a long one. Initially we had thought that our mother would come with us when we got admitted to hospital. But after our many trips there we realized it would difficult for her to do any running around in that large hospital or even manage in the hot and humid weather of Kolkata. So it was decided that our mother would stay back in Delhi and my eldest sister would come with us to look after us. Since my brother-in-law is in the army and he was posted out of Delhi, he took a month leave and came over to look after their kids while my sister came with us.