Chapter 10: Start of a new life
I booked my flight tickets for the 17th of November. My eldest sister accompanied me once more to take care of me while I was admitted. We went straight to the hospital from the airport. Our relatives including my donor were already waiting. We went up to the 8th floor of the hospital, which housed the private ward to get admission. Everyone in the hospital knew me well by now since my last stay there had been for more than a month. The staff at the billing counter on this floor was expecting me as the Head Nephrologist of the hospital had told them in advance about my arrival today. They greeted us warmly and completed all the formalities allotting private rooms as per my choice to both my donor and me.
The crossmatch test by the hospital was scheduled for 18th November since it can be done only 48 hours after a dialysis to get accurate results. I had taken my last dialysis in Delhi on 15th November at night so that I got the minimum 48-hour gap between a dialysis and the crossmatch test. Although I had got a crossmatch done in Delhi, the hospital conducted its own independent test before giving the go ahead for the transplant surgery. We followed the same procedure of going to this other hospital in an ambulance and giving our blood samples and thankfully by 4 pm the very same day the results had come in and the hospital officially confirmed that it was negative and that they would be going ahead with my kidney transplant now.
On 20th November at night I underwent my last dialysis. It seemed the longest and the most painful. I kept looking at the clock in the dialysis room almost every five minutes. I felt the blood flow in my fistula more than ever before and at the end of it my whole arm paining because of the pressure of blood flow. While leaving the dialysis room I also noticed that all my nails had turned black. However the Doctors were not too worried with that and said that it would all be fine after the transplant. From midnight I was not allowed to take any more food or water as per the norms before any such surgery.
Monday morning at 9 am on 21st November 2011, my Kidney Transplant was scheduled. In between some final tests were done on my donor and me to check our hemoglobin, Creatinine and other levels. The Doctors told me that after all that I had gone through in my last surgery this one was going to be a “walk in the park” as it was a much simpler surgery and the surgeon had loads of experience in doing transplants unlike nephrectomy which was rarely done.
At 8.30 am I was picked up by the OT staff in their bed as had happened the last time. My sister accompanied me till the floor where the OT rooms were located and wished me luck. My bed was again put in a waiting area where the nurses made the requisite entries. I saw my donor parked in a bed near mine. I asked him if he was worried but he said he that he was not. I wished him all the best and he wished me too. Soon I was back in a similar OT room as in all my previous surgeries. I met the same anesthetist who had administered the epidural. I asked her not to do that this time and she said that it wouldn’t be necessary now. I asked her when they would give the anesthesia and she said that she was just starting it. Within minutes I went into a deep sleep under anesthesia.
When I woke up I could feel intense pain around the side of my stomach. I was being wheeled out of the OT towards the kidney transplant patient’s ward. I kept asking for some painkillers but no one really listened to me. Once we reached the kidney ward the head nurse there tried to explain that I had already got my dose of painkillers and I could not be given any more as it would affect my new kidney. I was moved to a small cubicle in the kidney transplant ward that had space for my bed and a nursing station with a table that had all my reports. Each cubicle had a dedicated nurse round the clock. The cubicle had sliding glass doors.
I felt quite uncomfortable, as not only was I in a lot of pain but I was also covered with wires and tubes. I had a central line on my neck, ECG wires attached all over my body, a BP monitor cuff on my arm, a finger clip to check my oxygen saturation levels, a drain tube coming out of the stomach near the surgical area and finally a Foley catheter to collect urine directly from the bladder and empty it into a measuring pouch. I was getting a lot of intravenous drips some of which being glucose were increasing my sugar levels and hence an insulin pump was also attached to pump in the right amounts of insulin to metabolize it.
The first 24 hours were the most painful and difficult. The nurses came every hour to take BP and sugar readings. Not only that, at least 5 times in these 24 hours blood was taken from the central line to check for kidney function and other vital parameters like Hemoglobin etc. The moment I managed to fall asleep, the nurses would wake me up to take the sugar and BP readings. For the sugar test they pricked my fingers one by one so that by the next day tips of all my fingers had red marks due to repeated needle pricks. The worst was when they came to do the Doppler test to check if the kidney had been connected properly to the veins and arteries. The probe was put right on top of the surgical dressing where the cut was and I screamed in pain.
It was only by next morning that I felt a little better. Once the surgeon and Nephrologist came on their rounds they shared that my transplant had gone of very well. My urine output in the first 24 hours after the transplant was around 11 liters, which was an excellent sign. My Creatinine, which had been at 9.81 when I had been admitted to hospital for my transplant was now at 2.88 and was going down steadily. My hemoglobin after the surgery had gone down from 10.8 to 7.7 due to blood loss during surgery and due to large quantities that were being drawn out for the blood tests. Doctors expected it to go up soon with the new kidney working fine now. However my weight had risen to 57 kg from a pre-transplant weight of 50 kg due to a lot of IV fluids that were being given. But since my urine output was quite high, this also was expected to come down soon. As I was in the kidney ward, no visitors were allowed. So when my eldest sister came to check on me she could only wave to me from a small glass window built into door of the ward. But there was little time for one attendant at the window too as during the one hour that they were allowed to be there attendants of all patients wanted to get a turn by the window.
By the third day post transplant I was feeling quite good. In spite of the drain tube coming out of my stomach and the Foley catheter I insisted on going to the washroom to shampoo my hair. I felt a huge relief after shampooing and conditioning my hair. When the Doctor came on his rounds he told me exercises that I needed to do. One was the usual spirometer exercise that they give after each surgery to clear the lungs. The other was to fold the legs at the knees and stretch again all while lying on the bed. This was supposed to help my new kidney. The Doctor also told me to keep the oxygen mask on for as long as possible as that was also supposed to be good for my new kidney. The kidney transplant ward had 6 cubicles all inside a large hall with a common washroom and 4 single rooms with attached bath just outside this hall separated by a corridor. Almost all cubicles had patients who had just undergone a transplant. The moment I was in a condition to move around, I requested he head nurse to move me to the one of the single rooms. So on the 5th day post transplant I was shifted to a small single room with a television and an attached bath. Though it was not as big and luxurious as the private room that I had been admitted in, but at least it offered some privacy.
On the 6th day post transplant the Foley Catheter was removed and from then on I had to go to the loo, as there was now no bag to collect urine. Since I was still expected to drink around 5.5 litres of water a day for the benefit of the transplanted kidney, my trips to the loo were also quite frequent. By now my Creatinine was down to 1.15, which was well within the normal range. The huge sense of relief and happiness that I felt on seeing a normal report for my kidneys after such a long time is something which can only be felt by a kidney patient and cant be explained in words.
Now only two things remained before my discharge from the kidney ward. One was the removal of the drain. It had got delayed as the discharge into the bag of blood and fluid was above 50 ml a day and unless it went below that for two consecutive days, the surgeon did not want to remove it. The second was a ureteric stent which is a small plastic tube left inside the urinary connection to promote healing. Both of them were removed together in a minor procedure under local anesthesia in the Operation Theater on 30th Nov 2011. When I finally came out of the OT that day, I was relieved as I felt in the pink of health and I was hopeful that I would not require any further trips to the OT. I recalled that my first trip to the OT had started with the fistula surgery in Delhi. The second and third trips happened during the Bilateral Nephrectomy when after the first surgery got over I was taken back to the OT again to check on the complications and I had to be opened up again and blood clots were removed. The fourth trip was for my Kidney Transplant and the fifth and last trip was to remove the ureteric stent. I was not going to forget this year easily.
Once the stent and drain were removed, I insisted on being transferred to the private room. The private room was much more comfortable, was three times the size and had a great view from its 8th floor window overlooking the Kolkata skyline. So on my request, I was discharged from the kidney ward in a fit condition and moved to the private room as a normal patient under observation. I intended to stay there for as short a time as possible and then go back to my home in Delhi. I still needed my stitches to be removed and had to recover enough to take a flight back. In the initial five days post transplant, blood tests to check on kidney function and other blood parameters were carried out multiple times a day and after 5 days the frequency was reduced to once a day. Once I moved out of the Kidney Transplant ward, the frequency of tests went down to thrice a week.
The moment I left the kidney ward I got my cellphone and laptop back from my sister. As soon as I switched my phone on, I got a call from my office team asking about my condition. Then when my checked my mailbox in my laptop I saw more than 500 unread mails. The 10-day stay in the kidney ward had been the longest time that I had been without accessing my mails. I am quite a workaholic and find it difficult to switch off my laptop or not answer official mails even on weekends. The next few days I had the time to rest, recuperate and catch up with friends on the phone while doing a little bit of official work as well from my hospital bed. The moment I shifted to the private ward I was asked to wear a mask in presence of outsiders. In fact all outsiders who came to my room also wore masks to prevent spreading any infection to me. This precaution is necessary since post transplant the immunosuppressant medicines that have to be taken to prevent rejection of the kidney by the body’s immune system make us prone to infection as they work by suppressing the immune response of the body. However one really good thing that happens post transplant is that most of your food restrictions go away.I could have potatoes and tomatoes that I really liked but could not take earlier as they increased my potassium levels. I asked the hospital to make food for me as per my wishes. In spite of their best efforts, hospital food is not something that’s very appealing in the best of situations.
The Head Nephrologist in the Kolkata hospital wanted me to stay for at least a month under his care, but since he was himself going on leave from 8th December for a week, I used that excuse to take permission to fly back to Delhi and continue my monitoring under the Nephrologist in the Delhi hospital near my house. Luckily the Head Nephrologist in Delhi had been my Kolkata Doctors senior and also his professor many years back when they worked together at the AIIMS hospital in Delhi. Hence my Kolkata Doctor readily agreed to let me go.
On 7th December, the 16th day post transplant I was discharged from the Kolkata hospital and flew back to Delhi. Normally Kidney patients in this hospital are discharged on the 10th day post transplant and they come back for removal of stitches. I did not want to go out and risk an infection so I stayed in the hospital till all stitches were removed and I felt fine enough to travel. After reaching Delhi, the very next day, I went and met up with the Head Nephrologist in the hospital where I had been going for my dialysis and the hospital, which was very near my house. He examined me and saw all my reports. He was happy with my progress and gave me some basic instructions. He told me to get the basic kidney function and the blood parameters tests done twice a week for the first month and then once a week till three months post transplant after which it could be done once a fortnight. The tests are necessary to check if everything is going well and to adjust the medication, which is reduced gradually. However some immunosuppressant medicines have to continue for the whole life. Also, in case a rejection happens, tests are the quickest indicators to detect it and take corrective action, as there may be no symptom of a rejection in the initial stages. He also asked me to wear a mask at all times outside the house and avoid going out of the house for the first three months post transplant. He told me that I could join my work after this three-month period. He also told me to avoid driving for some time till my surgical wounds healed and asked me to take a high protein diet to quicken the healing process. I was also supposed to take boiled water at all times and eat only fresh home cooked food. All these precautions were necessary only for one reason and that was to prevent an infection since that could spread to my new transplanted kidney.
For three months after the transplant I had a nice time just resting and recuperating. I had dishes made at home that I always longed for but could not till now. I could also for the first time in many years have a peaceful sleep at night. I did not have to wake up frequently to make trips to the bathroom. Also since my enlarged and painful polycystic kidneys had been removed I did not have to wake up in the morning with tremendous flank pain that used to happen earlier. I had a lot of energy, was eating well and sleeping well.
At the end of the third month I rejoined work from my office in Gurgaon. Since I had no health worries and could give complete focus to my business, I soon managed to revive it from what it had dwindled to in my almost yearlong absence from work. I also started out with light exercises and also went for a half hour walk everyday after coming back from office.
My Nephrologist meanwhile wanted me to take time out to share my experiences with other kidney failure patients, counsel them and become an ambassador for Kidney transplants. I started spending time talking to patients referred by the Doctor and from others from my friends circle who were aware of my experiences. Some of these patients came over home to understand how I had coped with my condition while some spoke to me over the phone. The Doctor also asked me to meet some patients who were admitted in the hospital with kidney failure and did not know what to expect from life next. It gave me a lot of satisfaction to hear that whatever I had to share could be helpful even a little in alleviating their suffering. In fact finally my Nephrologist who was heading the department in the hospital suggested that I put down all my experiences in a book for everyone’s benefit and he would help publish it. In fact some of the patients that I shared my experiences with also thought that this would be a great idea and hence began my journey with this book.
On the whole my mental wellbeing and satisfaction along with an active life helped improve all my health parameters. Within six months my Creatinine was down to 1.0, my Hemoglobin was up to 13.5 and my weight, which after the transplant had dropped to 47 kg, increased to 60 kgs. Much of the weight gain had happened due to my increased appetite. Some of that appetite was because I was healthy and my kidney worked fine now, but part it was also due to some steroids that was a part of my medication. Although the quantum of steroids had been reduced substantially in 6 months since the transplant, still a certain bare minimum had to be taken for the rest of my life. Hence I had to try and control my appetite and increase my exercises to ensure that my weight did not go beyond the ideal weight for my height.
In fact life even just six months after the transplant is so normal now that I have totally forgotten how it was to be ill. I avoid telling new people I meet about my transplant status and they just can’t tell. I can only thank God and all the Doctors for all this, which for me seems miraculous. I do intend to remain cautious and not take the good health for granted so that I can ensure that I have a long and healthy life ahead. I sincerely hope that the experiences that I have shared thru the medium of this book help fellow kidney patients deal with and cope with kidney failure and motivates them to go in for Transplants wherever possible. I also hope that normal healthy people who read this realize how precious a gift it is to donate their kidneys and what an impact it can make to someone’s lives and some of them go ahead and make that life saving donation.