Chapter 9: Tough Days
On 8th August2011 I was admitted in the hospital for my bilateral nephrectomy that was scheduled two days later on 10th. Since I had booked the private room I was quite happy when I saw that the room was really big and comfortable. Looking at the room made me forget for sometime that I was due for a major operation in the next couple of days. However in spite of knowing the operation was a tough one I was looking forward to have my enlarged kidneys removed as not only were they very painful, they made me look horrible as well as my stomach had bloated up from all sides.
The Nephrologist said that I needed to undertake a couple of Dialysis before the OT day. Since I had seen videos of Dialysis and had seen my sister undergo it, I was kind of mentally prepared. Still it was with a lot of apprehension that I went when the wheelchair was sent to my 8th Floor room to take me to the Dialysis center on the 2nd Floor. The dialysis room in this hospital was large hall and had 24 beds in 4 rows of 8 beds each. Along with each bed was a dialysis machine a side table on wheels on which tea and biscuits were kept for some of the patients along with their medical files. I was taken first to an electronic weighing machine where I got out of my wheelchair and my weight was taken. I was at 55 Kgs. Just six months back when I was healthier I had been at around 62 kgs and for my height of 5ft 7 inches that was quite appropriate. The decline in weight had been quite steep, as my health had deteriorated.
The nurse noted down my weight and I was again taken in my wheelchair to the bed allotted to me, which was actually the one right next to the weighing machine. The dialysis attendant who came in to prepare the machine and fix the needle on my fistula knew that it was my first dialysis and asked me if I was nervous. I told him that I was ok, but he should tell me when he puts in the needle since I generally close my eyes and try to divert my mind to something else. He said that I need not worry and that he would tell me and I should hold my breath when the needle was put and It would hurt less. He also said that someone I knew was in the bed diagonally opposite and I was surprised to see my elder sister also getting her dialysis. Actually both my sisters were staying in a hotel near the hospital and she was due for admission in hospital for her transplant some days later so she had come for her bi-weekly dialysis. She waved to me and told me to stay calm and not get too worried about the dialysis needles.
When the needle was actually put in, I had my eyes closed, had held my breath and was thinking of snow capped mountains to divert my mind. This really worked and I hardly felt the two needle pricks. Out of the two needles one is connected to a tube to take blood from our body to the dialysis machine and a second needle is connected to a tube to take back the filtered blood from the machine. After the needles had been put in, the technician wrapped a Tegaderm bandage around each needle so that it was held in place securely. The bandage wrapped around the needle further reduced the feeling of the needle inside the skin and I was surprised how quickly the body adapted to the needles inserted in my veins. One feels pain when the needle pierces the skin as its quite thick but once its inside, the pain subsides until the time when the needle has to be taken out at the end of the dialysis session. Initially there is some sensation of blood flowing at a high speed and reentering the body at a high speed, and this does cause some pain further up in arm but with time as the walls of the veins become strong enough to take the pressure the pain goes away. My dialysis session was a little different from others, as I was not given “Heparin” which prevents blood outside the body from clotting. Instead they had to flush the machine every half hour. This was increasing my fluid input but was necessary since giving heparin now would impair blood clotting and healing after the surgery.
Once I got used to the feeling of pain and the strange sensations of blood flow, I started looking around and observing other people. Most looked unconcerned with the needles and the tubes wrapped around and were involved in their own activities like having tea, reading or just listening to music on the headphones. It did seem surprising how the thing I dreaded the most – the dialysis had become a routine part in so many peoples lives. These 4-hour dialysis sessions were now going to be a part of my life’s routine too.
On the day of my operation, I was not allowed to take any food or water. The OT was scheduled for the afternoon at 2 pm. My ex-boss who was the CEO of the company where I headed HR in 1998 in Satna had flown down from Bangalore to see me. This was his last year in the company before retirement and when he had heard about my admission in a hospital in Kolkata he had insisted on coming all the way from Bangalore and being by my side. Both my sisters also came over and all of us had a nice time chatting. In fact my sister also connected with my brother-in-law on Skype and he also wished me all the best for my bilateral nephrectomy. When the Head Nephrologist came over to see me and wish me I asked him if he would be there in Operation Theater during my operation. He replied that it would not be necessary and the Surgeons would be there. He said that if ever he needed to go to the OT that was not a good sign, as it would mean that there was some major problem that required his presence.
At 1.30 pm the folks from the Operation Theater came with their bed to take me. They asked me to change from the hospital gown to an OT dress. I did that, removed my spectacles and got into their bed quite cheerfully. I was then strapped to prevent me from falling off and taken from my 8th floor room to the 1st floor OT room. Again there was a waiting room where the relevant entries were made and then I was taken to the OT room. The room was quite similar to the OT room in the Delhi hospital where I had my fistula made. It had the same large lights, the slim bed to lie on and a large AC grill above the OT table from where cold air was blasting inside. There the anesthetist asked me if I was ok with an Epidural being injected in my spinal cord, as it would reduce the post OT pain considerably. I asked her if it would hurt. She said that it would feel as much like a cannula being put in. Since I was used to a cannula being put in, I said ok. However after the cannula was put in, they made me sit on the OT bed and asked me to bend with a pillow between my knees and head and then injected the epidural. The pain of the liquid being injected was so much that I screamed so loud I am sure the whole floor would have heard the scream. It was worse than any pain that I have ever felt till date. Thankfully after that they gave general anesthesia and I was soon in deep sleep.
My eldest sister and my boss waited outside the OT room while my elder sister went back to the hotel since she herself was a patient and was to get admitted to hospital in a couple of days. Since this hospital did not encourage attendants waiting on the OT floor, there were no seats kept there. So finally they went down to the ground floor and waited. There was a “may I help you counter” where they could check on the progress of the OT. Since the Operation was expected to last around 4 hours my sister asked my boss to go home and rest, as it would have been a tiring wait. But he insisted on waiting too. He said he had come here all the way just to be with me when my operation was to happen and he was not going to stay away from the hospital till he knew I was fine. At around 6 pm my sister went and checked on my progress and they said that the Operation had just finished and the Doctor would call them shortly. There was a public address system in the waiting area through which patient’s attendants were called for the multiple operations happening in the hospitals various operation theaters. When the Doctor did not call in the next one hour my sister again went to the counter and this time they said that the OT was still on. She got worried and she along with my boss came upstairs to the OT floor and peered thru the glass on the main doors. A Doctor was coming out that way and they accosted him to find out any information but the Doctor only said that my Operation was still on and that any information could only be shared once it was over. Since the surgery was not supposed to take this long my sister decided to visit the Head Nephrologist in his chamber in the ground floor. There his assistant told her that he had gone to the OT and mine was the only surgery happening at that time under the Nephrology department. This made my sister really worried as he had mentioned earlier that his being in the OT was not a good sign and he went only if there was a problem. She rushed back upstairs to see that the Nephrologist and Surgeon had come out of the OTand were talking to my boss in hushed tones. They explained that there had been some unforeseen complications.
It had so happened that my kidneys had enlarged so much that both of them together weighed around 5 kgs. Also the kidneys are located a little towards the rear of the abdominal cavity and since they were so enlarged it was a tough task for the surgeons to remove it thru a 14 cm vertical incision. The incision was such that it was in the center of the stomach passing thru the navel midway. In the process I lost a lot of blood. Hence a lot of blood needed to be transfused. After the operation was over and they had stitched me up and shifted me to the recovery room, but they observed that my hemoglobin was down to 4 inspite of giving me 9 units of blood. Also they saw that I was a sinking with a weakened pulse and heartbeat. Hence they had decided to take me back into the OT again. While all this was happening I do have a faint recollection of hearing a lot of panicky voices around me trying to revive me and I trying my level best to open my eyes or lift my fingers and move my toes, but no matter how much I tried I just could not. Hence they had to open up the stitches to see what was wrong. On opening up they found a lot of clotted blood. In fact they then removed around 1 litre of blood clots and with a lot of difficulty managed to stabilize me. I was put on ventilator support and moved to the one of their bestIntensive Care Units on the 7th floor. It was the ICU for heart patients and had the best anesthetists looking after it.
They had already shown the kidneys they had removed to my boss. Since they were quite enlarged and covered with cysts and blood, they avoided showing it to my sister. However they were hopeful that I would recover consciousness soon. Thankfully my boss was around else all this would have caused much more distress to my sister. They went back and thru the night my sister checked regularly with the hospital to know if I had regained consciousness. The next day they reached the Doctors chambers as soon as he came in that morning at 10 am. He was glad to tell them that I had just then recovered consciousness.
In the ICU as soon as I regained consciousness I was fully alert and my mind was active. I felt much better as I felt lighter in my stomach from where my heavy and painful kidneys had been removed. However I was feeling thirsty as the ventilator was pumping in oxygen directly into my mouth. A ventilator blows air into your airways through a breathing tube. One end of the tube is inserted into your windpipe and the other end is attached to the ventilator. The breathing tube serves as an airway by letting air and oxygen from the ventilator flow into the lungs. I also had a feeding tube put in thru my nose. Apart from that I had a catheter in my neck for administering various drips and medications. I also had a femoral catheter that was inserted during the OT for some emergency procedure. I had two thick and long transparent plastic pipes coming out of both sides of my stomach attached to bags that had filled up partly with blood and other fluids. These were basically surgical drains put in order to drain out excessive fluid, air and blood from the surgical area. I also had wires attached to different parts of my body connected to the ECG monitor and finally a finger clip attached to a wire to measure my oxygen saturation levels. It must have looked quite messy, but thankfully because of the epidural and other pain killers administered intravenously, I was not feeling much pain just as yet. Also the combined effect of all the drugs kept me quite sleepy initially to feel much discomfort.
I did ask a Doctor on the rounds the reason for putting the femoral catheter since I knew that it should be avoided for patients who are to go for a transplant, but the doctor on duty told me how it was an emergency and that they had to put it there. He also told me that I was given blood transfusions and how things had gone bad but with the grace off God I was fine now and had been saved. Some time later, my sister and boss came over to meet me. I asked my sister what had happened and whether I got blood transfusions since I was worried that it would affect my crossmatch test for the kidney transplant. She told me not to worry and she would tell me all that later when I was out of the hospital. My boss came in and he was happy to see me in normal talkative mood. I told that there were just too any pipes and tubes attached to me. He said that he had a bypass surgery some time back and he also had many tubes like this. He said that at times like this it was best to surrender to the Doctors who knew best.
The next few days I recovered quickly. I had to constantly exercise my lungs using a spirometer since there was a lot of phlegm that had accumulated after the operation and it had reduced my lung capacity. Also, since I was without my kidneys now, I passed no urine and needed frequent dialysis.The dialysis machine was brought to the ICU to give me a dialysis every alternate day. As there had been some platelet transfusion along with blood during my nephrectomy surgery, I had ended up with a high platelet count. Hence I had to be given high doses of Heparin during dialysis so that my blood did not clot in the tubes. My dry weight now was 50 kg compared to 55 kgs before my nephrectomy as 5 kgs of kidney had been removed. After the 5h day in the ICU I was moved back to my private room in the 8th Floor. By then all the pipes and tubes had been removed from my body. However the pain levels had increased considerably and it was at least 10 days after the operation that the pain reached bearable levels. In fact the first time I had seen the cut in the stomach it looked like someone had stitched a blanket. By the 12th day all stitches had been removed. Meanwhile my elder sister had also undergone her kidney transplant in the same hospital and was now in the kidney ward recovering. Since no one is allowed inside the kidney ward for the first seven days the information that my eldest sister had about her was limited.All we knew that she was doing well and her parameters were fine.
My transplant meanwhile had been planned for 26th August. Till then I had to go for dialysis every alternate day. I kept counting down on the number of dialysis left and that gave me the strength to bear the present ones. On 23rd August 2011 I turned 39. A school classmate of mine used the occasion to send an SMS to inform my entire school batch that it was my Birthday and that I was in a hospital and that they should call and wish me. The effect of this was that I got calls from all over the world from folks that I had totally lost touch with. I also got a huge number of wishes on my Facebook account. On the whole it really cheered me up. The downside was that by evening I was totally exhausted with all the talking.
The very next day I had a fever. The Doctor prescribed antibiotics thrice a day for 3 days. The nurses had a tough time when they tried to put a cannula this time. Since my fistula was in the left arm, the cannula had to be put in the right arm. However every time they put a cannula and tried to flush it, it would block because of some air gap. Whence the nurse put pressure on the syringe the internal pain in the veins was unbearable. However again I tried not to show that I was in a lot of pain. This was detrimental as they did not realize when to stop and the net result was that my veins turned black and blue because of the excessive pressure exerted by the syringes that the nurses were using to flush the cannula. After three attempts they managed to put one cannula through which they managed to give me the antibiotic drip. They also had to put a lot of “Thrombophob cream” and other balms on my arm to reduce the pain and swelling.My arm had swollen up because of the many failed attempts to put the cannula. When the Doctor came to see me, he said that the transplant would have to be deferred till my fever subsided completely and they could most likely do it on 1st September. I was quite disappointed with the delay, but I hoped that I would be fine soon. Typically on the third day the cannula has to be replaced to avoid an infection. Since the Doctor had mentioned that the antibiotic was to be given for three days it would have worked out fine. Although the cannula was removed they realized that my fever had not gone and the Doctor increased my antibiotic dosage from 3 days to 7 days. He also deferred my transplant date once again to 6th September. By now I was mortally scared of the cannula and my arm was in so much pain that I requested for an alternative. He said that they could then put an intravenous line on my neck called a “central line” and it could be kept even after the antibiotic drip had been stopped,as it would be required during the Transplant Surgery.
A Doctor under local anesthesia puts in the intravenous line on the neck. For kidney patients, this procedure is normally carried out in the dialysis room. On my request the Head Nephrologist organized for the line to be put in my room itself. The doctor who came to do this procedure was a pleasant Bengali gentleman whom I had met many times in the Dialysis room. He made me lie down on my bed without the pillow and then asked me to turn my neck on one side. He then told me that he would give me an injection with local anesthesia, which would hurt a little. After the initial pain, I could not feel when he put the thin tube inside the jugular vein in my neck. Mine was a triple lumen line with three tubes. After the procedure an X-ray machine was brought into the room to check the path of the line.
The central line though heavy to carry on the neck was a boon as antibiotics thru this line never caused air gaps or stopped. The line was also used to do blood tests. It saved me a lot of further pain from cannulas and gave my arm time to heal. By the seventh day of the antibiotic drip my fever finally went away and I was free again from the drip that was being administered thrice a day. However dialysis was something that still happened regularly and I really disliked it. I had become a little experienced in moving my arm in the dialysis room with all the tubes and needles attached and I used to take a book to read along with me. That partly helped to pass the time. However, I did look at the clock every half hour to check when my 4 hours were to get over.
On 5th September I went for my final crossmatch test before my transplant scheduled for the next day. I had already had this test before and it had come negative based on which the donor was approved. However with time, many factors can cause antibodies to develop in the body against the donor and there is a risk of a positive crossmatch. Hence a final crossmatch test is done again just before the transplant. My donor and I went in an ambulance early in the morning to another hospital that had the facility for this test. After taking our blood samples we came back. The report was expected by 4 pm. When the head nephrologist came for his rounds I asked him what were the chances of my crossmatch coming positive. He said that it would be rare, but if it happened the transplant date would have to be deferred again. That thought stuck in my mind and the worst-case scenario kept coming to my mind. Till 4.30 pm I heard no news on my crossmatch report. My eldest sister had gone to get the report from a relative of ours. But she was taking a long time to come back up to my room. At around quarter to six a family friend of my sister and brother-in-law who is a leading Doctor in the army hospital in Delhi and who had been in touch with me since I was admitted here and was guiding me with my queries called. He said that I need not worry and that I can come back to dialysis in Delhi and come back to Kolkata later. Since I had not heard about my report, I asked in alarm if my crossmatch was positive. Even he was surprised that my sister had not told me this as yet and he confirmed the same as he had spoken with my sister just a while back. I had a bad sinking feeling that I can’t even describe in words. I had tears in my eyes as I stared into the possibility of going back from this hospital with no kidneys and months of dialysis ahead.
When my sister came up to the room, she showed me the report. She had got delayed, as my donor whose admission process had been initiated had to be cancelled since my transplant was not happening. She told me that although my crossmatch was positive it was so only by a small extent and she said that the Doctor was confident that very soon it would become negative. She also said that the doctor had told her that it could have come positive either because of the large amounts of blood transfusions that I had received or because of the fever that I had. She said we could go back to Delhi, I could recuperate and then come back healthier and stronger to face another major surgery like a transplant. She said that I still had the pain of the last surgery and probably it was good that I was getting an opportunity to recuperate fully. So we decided to book our flight tickets back. My elder sister had by now recovered from her transplant and had been in the private room near mine for some time now. In fact both my sisters and I used to play scrabble each evening. Although the Head Nephrologist wanted that she stay for 3 months post transplant under his care, but since all of us were going back and since we had a good hospital near our house in Delhi where she was assured of good care we were able to convince the Doctor to let her come back with us.
Before we left for Delhi I was given two more units of blood, as my hemoglobin was quite low at around 5.7. Ever since my kidneys had been removed although I was taking erythropoietin injections every alternate day it had just not helped increase my hemoglobin. On top of that twice the Heparin given during dialysis was not sufficient to manage my high platelet count. Hence the blood had clotted in the dialysis tubes and the entire dialyzer and the tubes had to be replaced mid dialysis. This meant that I lost all that blood which reduced my hemoglobin further. Doctors were not too worried since they had said that immediately after a transplant my hemoglobin would rise quite fast. But since now the transplant had been indefinitely delayed, they had no option but to give me blood transfusion once more so that I had sufficient hemoglobin to be discharged from hospital. This time though they gave a medicine before and after the transfusion, which was supposed to prevent it from affecting my crossmatch. I also had my last dialysis in Kolkata before I left for Delhi the next day. I met the Doctor in the dialysis room who had put my central line in my neck. I told him about my situation and asked him how much time it would take before my crossmatch could come negative and he said around 3 months. This helped me mentally prepare for the tough days ahead with no kidneys and a life completely dependent on dialysis.
Once I was back in Delhi on 9th September we immediately went to our hospital near our house where my sister used to get her dialysis done. It was difficult to get a slot as the dialysis room was overbooked. Since my sister had been their patient for close to three years, once they got to know that I was her brother they tried to accommodate me in some slots.
The next three months my schedule revolved completely around my dialysis. My brother-in-law insisted on getting me a driver who would accompany me for each session to the hospital. The dialysis here was a lot better with facilities including food offered being of much higher quality. It was off course much more expensive as well. Once or twice a week I went to my office to look after my business. Typically on days when I did not have a dialysis scheduled.
A lot of people were surprised that I was alive and could move around normally with no kidneys. In fact I believe it must have been some kind of a record in terms of the time I spent without any kidneys in my body. When I checked on the net and Googled the question – “can survive with no kidneys”, the answer was invariably a no. The fact is that failed kidneys are almost the same as no kidneys. The only difference being that failed kidneys may do very little say one percent work producing some urine and probably some hormonal work. In my case there was no urine produced at all. It meant a very quick fluid overload. This brought it’s own complications. At times the fluid would go into my lungs and I would find it difficult to breathe while lying down. This happened once at night and I just could not sleep. In fact I had to rush to the hospital first thing in the morning and the Doctor advised an emergency dialysis after which I felt better. Also in my case if my weight increased because of fluid above 4 kgs in between two dialysis sessions it spelt trouble. If they tried to remove that excess fluid in the dialysis session I would suffer from the worst possible and the most painful cramps on my legs. It used to be so painful that dialysis technicians had to rush and hold and massage my legs, switch of the dialyzer and inject saline.
Other complications during dialysis were low BP or low sugar. Once during dialysis I propped up my bed a little more than usual to have my breakfast and the needle pumping blood back into the body pierced and moved out of the vein and I had a lot of blood that went into my arm swelling it up instantly. It was terribly painful and the technicians had to come and turn off the machine. They had to then compress my arm and it was days before the swelling subsided after the surrounding tissues absorbed the blood. On the whole it was not easy on me and I just hoped and prayed for a quick transplant.
Since this time I needed frequent dialysis I could not go to Kolkata to get my crossmatch done. So a leading lab with branches in Delhi and Kolkata managed to transport my donor’s blood sample from there and do the crossmatch here in Delhi. I got a crossmatch done on 10th October within a month of coming to Delhi but it was still positive. A second attempt on 9th November finally came negative. I was really happy to get the report. By now my patience was running out and my dialysis sessions had become quite painful. The blood flow being so fast in my veins that after each session my whole arm pained a lot. It was with a lot of willpower that I was able to complete each session of 4 hours.
I called the Head Nephrologist in Kolkata and told him about my report and asked for a quick date for my transplant. He knew me so well now that he really went out of his way to give me the earliest possible date. We fixed the date of admission into the hospital for 17th Nov and the date of transplant for 21st Nov. This was within 11 days of my report and I was really happy that I was finally close to achieving a normal healthy life. Seeing my sister after her transplant, I was all the more motivated to get this done quick. She was free from dialysis, had no food or fluid restrictions except for avoiding food from outside and having boiled water to prevent against infections and she now also had a high hemoglobin and energy levels without any erythropoietin injections.