Ok, here it is.. a recap of my stay in the hospital. One thing about recuperating at home, sitting in my dialysis chair with my legs up typing with two hands is a great way to rest
Saturday, November 1, 2008It all started while I was at home, asleep in my bed. A 32 year old man had a cardiac arrest, and was put on life support. He was an organ donor, and his final gift in life was donating his organs to strangers in need.
Sunday, November 2, 2008My phone rang around 6am, as it was the reversion of daylight savings time, I had thought that I’d be gaining an hour of sleep, but after a brief conversation with my Transplant Coordinator, there would be no extra sleep. I was second on the list for a kidney. The circumstances of my donor’s death were discussed, and the kidney was a match. The wait was on.
I had an “on deck” phone call in July, so, as time passed, I was ready to start my normal day, I made coffee, because even if I did get the transplant, coffee wasn’t so bad, and my nerves needed at least a small cup. I sat in my dialysis chair and pondered transplant. I had some pretty important plans for the upcoming week, something I had been looking forward to for a year, the cynic in my just said “figures”. After an hour or so, my phone rang again, the kidney was mine. My head started to spin. I had been planning for this moment since June 2005 and here it was. I stood in the middle of my living room and thought “what now?” I called Bill, as usual; he had a witty reply and gently talked me through my mild panic attack. After we hung up, I started the alert chain, my friend Nancy was to be the gatekeeper of information for my friends. I ran through my checklist of prep for the surgery –after all, I was to be away from home for at least 5 days possibly longer, cleaned the kitchen, took out the trash, watered the plants, took a quick hot anti bacterial shower, paid any bills that would be due in the next two weeks, got dressed in the clothing that I would be going home in, packed a bath bag, packed a book and my phone charger, walked out the door and down to Broadway to grab a taxi to the hospital 114 blocks away.
As I was in the taxi, I called the family in London, my boss, and two of my best friends. My Transplant Surgeon called me to check in and coach me through what to pack, and was surprised that I was already on my way to the hospital. He told me to go straight to my room, and the nurses and Surgical Fellow were waiting for me.
My room was on a floor that I had been on before for other surgeries, and my admitting nurse remembered me. We caught up as I unpacked and gowned up, the Fellow came in and took my history and started an IV. I was allowed to self cannulate and draw my own pre-op bloods (after all, after a year of home hemodialysis, if anything, I know how to self cannulate) this led to my first of many conversations with staff about High Dose Home Hemodialysis (HDHH), and how it has benefitted me for the past year, and I credited it for keeping me in great health for my transplant. The Fellow left me alone in my room to relax, and I made some phone calls, sent some e-mails from my phone and tried to breath. I was also visited by a man with a portable x-ray machine, and I had a chest x-ray in the comfort of my own room.
My Transplant surgeon, Dr. Benvenisty came into the room and we did my pre-op and informed consent. We discussed the kidney at length, and he offered to hold onto my phone so that I’d have it in recovery, I called home one last time, and of course, I had low balled/simplified the surgery so much, I was told that they were out shopping. I had to laugh. I handed off my phone, became a patient and was wheeled down to pre-op.
I’ve had a few surgeries at St. Luke’s, so I know pre-op well. It was a quiet Sunday morning, including mine, there were only 3 surgeries. I was given my first dose of cellcept. As I lay on the gurney, we chatted, talked cell phones, and waited for the kidney to arrive. There was some concern, as it was the day of the NYC Marathon and we were worried that it was stuck in traffic. But it wasn’t, it was in a different room, and soon, it was wheeled into pre-op. It was a sobering moment. The cooler is high tech, and on wheels, and the cooling system makes a whooshing sound that is positively sci-fi. And there is a form of ceremony in the delivery of a donated organ for transplant, the team gathered round the cooler and processed and witnessed the delivery, blood type was cross checked, tests were cross matched, and everything was witnessed at least three times. Then they opened the cooler. I was on the gurney, and my glasses were upstairs in my room, I didn’t see my new kidney, but I knew that it was in good hands.
Soon enough, we were both being wheeled together to the operating room; the pulse of the cooler will be in my mind forever. I was wheeled into the operating room, my kidney stayed behind for a moment. I got up, and hopped onto the operating table, said hello to the team, was covered by a warm blanket, told the nurse that this was the best spa ever, and then I was out.
While I was out, I was intubated, two additional IV’s were inserted into my non fistula arm, a foley catheter was inserted and a 9 inch incision was made in my lower abdomen (I had begged for a tummy tuck to be included, but alas, it was not to be) and my new kidney was grafted into my body. It started producing urine while I was on the table. There is a common anomaly in some kidneys, two renal arteries – well, mine had three, my new kidney actually has two renal pelvises, but as it is a common thing, and my surgeon is extremely good at his job, he simply dealt with it. No problems – it just looks a bit odd under ultrasound, if the radiologist doesn’t know the physiology. (more on that later)
The first thing that I remember is telling people that I had sprung a leak. (an IV had come out) it was quickly remedied, and the nurse was asking me my name, and did I know what I was there for. At some point, Dr. Benvenisty’s name was mentioned, and I heard him call out “I’m right here” I replied “You’d better be” (did I mention that I really like this man?)
The next thing I remember, he gave me my phone, and my post-op nurse was taking my vitals, we were alone in recovery overnight, and I was on the phone letting everyone know that I was out of surgery and all was good. At St Luke’s it is common for Dr. Benvenisty to keep his post-op patients in recovery a bit longer, you get intense nursing care, and there is an isolation room that has been informally named the “Benvenisty Suite”
Monday, November 3, 2008I was moved in to the suite in recovery in the morning when other patients started coming in. My immunosuppressive regime was started, the meds that will be altering my body chemistry for the duration of my graft, 2x a day for the pills, and 5x a day for the anti fungal liquid. With regard to my kidney, there was a little hiccup. My urine was emptying sporadically; the overall volume was ok, but inconsistent. This could be a sign of hydronephrosis. My surgeon is a cautious man, and he ordered an ultrasound. But my creatanine had already dropped for 6.8 to 3.6 there was no doubt that the kidney was working, but what was up with the inconsistent peeing? Dr. Benvenisty suspected the foley, but tests were ordered to be absolutely sure. The radiologist noted the second renal pelvis and there was a question of ruling out hydronephrosis – so now we were on alert. For the first time, I got up to a chair. I had intense gas pain. (maybe that Sunday coffee wasn’t such a good idea)
My arterial IV was removed, which was a great relief, as it was on the inside of my right wrist, and each time I grasped the bed rail to either move myself in bed, or get up, I was putting serious pressure on the line, and I had one heck of a bruise. I was down to two IV’s , a pain pump, the erratic foley, oxygen cannula during the day and oxygen mask at night, and the cardiac leads, slowly my tubes were dwindling.
I don’t remember which staff member ran up to my room for my phone charger, but as soon as I was plugged in, I was chatting away. I think that I would have gone insane without my phone… And speaking of insanity… On Monday I had a very intense reaction to a conversation that I had earlier. Really intense, intense to the point that I wanted to make a call and set things right. This is not in my nature, and I was a bit freaked out by it, I closed my eyes for a second, and saw cartoons. Personal revelation here: I have done recreational drugs in my distant past, and as soon as I saw those cartoons, I knew that I was tripping. Ah hem “Hallucinating” I believe is the proper medical term, and all I can say is that those closed eyed cartoons saved me for a potentially embarrassing phone call. Note: This is a rare side effect of prednisone and as I was not only on prednisone but Dilaudid as well, I am surprised that this was my most intense reaction.
I had a visit from the Infectious Disease physician who was called in to test my sensitivity to bactrim, we had a great visit, and decided that since the antidote to reaction to bactrim is steroids, and I was already on prednisone, we gave bactrim a try. No problem.
Bill has alluded to my “adventures in nursing” and I’ll admit that he is privy to more detailed/candid information than you’ll get in this narrative. I’ll just say that I had intense nursing care, and on most days there were two nurses following me, but sometimes those two nurses had to take a break, and let’s just say that many cooks can spoil the soup. My overall care was amazing, and I complimented the Nursing Supervisor on his staff when he popped in to visit me. It is just that when you are being cared for by so many people, surgical residents, Renal Fellows, Interns, Attendings, Nurses and Aides – well, you run the gamut, and everyone has an opinion on how things should be done, and the Nurses seemed to have the most diverse opinions.
On Monday night, I had my first visitors, my Boss, one of my best friends and a friend/co-worker. They were excited/relieved to see how I was progressing. They also were there when I met with my new Nephrologist, and that comforted them to realize that I was in such good hands. That night, I slept and chatted with my nurse, shifted a lot in bed to try and get the gas to move, I was woken up every few hours for vitals and soon enough it was morning. There was some concern about my oxygen saturation as well. I wasn’t breathing as deeply as I should have been, so a chest x-ray was ordered, and I was given an incentive spirometer (breath exercise device) to build my lung volume. I had another chest x-ray taken while I was sitting up in my bed, and the radiologist saw low lung volume, so there was definitely an issue to address.
Tuesday, November 4, 2008 Election DayI was given a sponge bath, my meds, and brought my clear liquids tray. I was told to drink, drink drink. I was also on strict I/O (input output) so everything was recorded. Still, my peeing was erratic, so more tests were ordered. Another ultrasound, then a CT scan, then a nuclear medicine study of my kidney function. It was a day of tests. That night a friend from work came by to say hello, we visited for a bit and then I slept. The windows were open in my room, and around 11pm, I was snapped awake by spontaneous cheering, I smiled. Obama had won the election, and NYC was overjoyed and had taken to the streets in celebration. I smiled and tried to go back to sleep. But, it was a restless night, I lay awake for a while wondering what the hell have I done to my body? Just two weeks ago, Bill, Cairny and I were walking the trails of Mt Rainer eating sandwiches by waterfalls - it was a perfect day, and I felt great. But there I was, two weeks later in a hospital bed, in pain, drugged up and questioning my decision. This was my passing moment of regret, and in hind sight, I am glad that I had such a dose of reality – it makes me appreciate the good moments more, I fell asleep, and morning came quickly.
Wednesday, November 5, 2008The morning started out badly. I was in a lot of pain and I had to get up, at one point, I just lost it and wailed, deep intense crying as I tried to sit up in bed. This only lasted for a few seconds, and it ended in convulsive coughs, the silver lining was that it cleared my lungs, I could breath deeper, so that meant that soon I would be taken off oxygen. Then it was time for vitals, meds and moisturizing. An aide came to walk me to a bathroom to wash myself. It is at this point that I should note that I am blind as a bat, and my glasses were up in my room, so for the past few days, everything was a blur. I was moved to a different room in the recovery unit, and I was brought a breakfast tray with real food on it. I was able to eat some egg white and a couple of bites of rice crispies, and then I was wheeled back to ultrasound. After my scan, I came back to my room, met my new nurse and we went for a walk, then it was back to recovery to meet with my surgeon, fellows and nephrologist. My Surgeon was concerned that I didn’t have my glasses and he dispatched a resident to get them from my room, but they were not to be found, this caused some concern, but I knew that I had a spare pair at home, so someone could go and get them if needs be. It turned out that the floor had given away my room and packed up my stuff, and Dr. Benvenisty was not informed, his staff came to visit me later that day, and they brought my glasses to me, I could see again. I missed lunch, but got dinner, some turkey, I scarfed that turkey down and it tasted good, but I was reaching the point of selling my soul for a cup of coffee. For the rest of that day, I was on the phone, reading IHD, making calls and listening to TV, and by the evening, I was moved to my official room upstairs. The cardiac leads were removed as was my oxygen, I was feeling great.
There is a private section on the 10th floor of St Luke’s it is decked out like a hotel room (non alcoholic mini bar, TV with cable, DVD and VCR, wifi, a great view of NYC, and an ensuite travertine bathroom with shower. I liked it, and my new room was at the far end of the hall, so it was an oasis of calm, which was so peaceful after the constant activity of recovery. My IV’s were stopped, and I was on normal drinking for my intake. That meant that one more IV was removed, I was down to one IV and that was hep locked as an access, I could easily live with that. The only thing that surprised me was the multiple needle sticks that started on Monday morning to check my blood sugar (diabetes is a common side effect of an immunosuppressive drug regime) As we could only use my right hand, my fingers were taking a beating, and my belly was starting to look like I was part Dalmatian from the frequent heparin shots that were administered, soon enough, we had to move to injecting my legs, as we ran out of space on my belly – which on normal days has plenty of real estate to go around.
At 3am, I realized that today was probably the day of my donor’s funeral. I spent some time thinking about him, and the fact that our lives were now entwined. I started writing my letter to his family in my head. Receiving a kidney that is a person’s last gift of their life to a perfect stranger is a humbling event.
In the middle of the night, I was introduced to sci-fi vitals. My temperature was taken by a wand that is slid around the perimeter of my face and ends up behind my ear. Now, I have been woken up before by some pressure behind my ear, and I like it, imagine how confused I was when it was an aide taking my temperature.
Also in the middle of the night, there was some confusion as to why I wasn’t on an IV drip, so the Resident came in and I was hooked up. In the morning, my surgeon officially stopped the IV and I was back to just the heplock and foley.
Thursday, November 6, 2008Cool thing about being on a private floor? The concierge brings you the NY Times in the morning. If only I had coffee to go with the paper…Imagine my surprise when I was delivered a clear liquid tray. I was starving, and frantic for coffee. I called my boss and asked him to bring me food. I had some serious negotiating to do with the staff. Also, this was the morning that the gas pain finally resolved. It was going to be a good day.
The transplant team came bearing gifts, a stuffed flower for the foot of my bed, and a swag bag of a watch, socks, t-shirt, a pain pillow and other swag for my new chapter in renal replacement. Dr. Benvenisty’s staff are super stars I firmly believe that good gravitates to good, and in this case I have developed a close personal relationship with each member of staff, Maddy the Coordinator, Sherie the Social Worker and Barbara who runs the place. They care, and it shows. Each day, they showed up to visit.
That night, I was advanced to real food, and my boss showed up with some lentil soup and quinoa salad, a robe and some cool socks. I ate a little soup and it tasted great. He put the leftovers in the mini bar and I spent the night watching TV.
Friday, November 6, 2008An exciting day. I woke up to the nurse telling me that she was removing my foley. Did you all hear my sigh of relief at around 5:30 in the morning EST? I was up and after a visit from Dr. B - he allowed me to shower.. I walked to the nurses’ station and begged for some clean gowns and towels, then, I showered. I knew that it was going to be a good day. I had a great visit with Sherie the Transplant Social Worker, and my breakfast tray was delivered with coffee on it!
I was wheeled to ultrasound for the final time to scan my legs for any blood clots, then promptly brought back to my room. And pretty soon, I heard a familiar voice entering the room. Bill settled in, whipped out his laptop and told me to post, then we ordered pizza, the picture was taken, and we had a visit from Maddy the Transplant Coordinator who went over my discharge and meds. After lunch, Bill was headed back to ASN/Renal Week in Philadelphia for an evening dinner, and I went back to bed to rest, but it was not to be. First I was visited by the dietician, then, occupational therapy, we walked the hall and then I got a drink out of the mini bar to show that I could reach, and she cleared me to go home. I got back into bed, and the Physical Therapist showed up to walk me in the hall and do two flights of stairs to prep me to go home. I got into bed and then the chaplain visited, it was while I was chatting with her that Dr. B showed up, sorry that he missed Bill (he reads the blog) and then he walked to the mini bar, took out cans and bottles, and told me “This isn’t a social visit, drink all of this, I want you to pee”. He then whipped out his very cool lap top, asked me why I wasn’t blogging and he read Renal Web while I drank. Soon enough I was able to pee on demand, and he was satisfied with everything and said good night. For him it may have been a good night, I was up all night going to the bathroom; I must have drunk 30 oz.
I also had a visit from two friends, but I have to admit, I was wiped out.
Saturday, November 7, 2008It was a rainy miserable day, and my breakfast tray had sanka on it. The residents came in and changed my dressing from abdominal pads to gauze, I puttered, watched TV and my friend Cristiane came to visit. I learned that ordering Swedish meatballs not a good thing and I also learned that CellCept can wreak havoc on your GI system. This was not a good bodily fluids day. But I got the news that I was being discharged on Sunday, so honestly – who cares, I was going home!
Sunday, November 8, 2008I was home by 5pm, and I walked into my little apartment exhilarated and exhausted, greeted by a blooming geranium and a humming NxStage Machine. How can I put into words the relationship that I have had with this machine still sitting by my side? For a year, it gave me freedom and health - a few administrative headaches, but overall, I credit it for keeping me in the best possible shape I could be in. Soon enough, it will be passed on to another person, and then they too will benefit from home hemo. The first thing that I did when I walked into my apartment was unplug my dialysis machine, after all, it is now unplugged, and so am I.
Update: On day 33 I posted my Stent removal here:
http://ihatedialysis.com/forum/index.php?topic=11377.msg193677#msg193677November 2010Has it been two years already? I guess so. Wel, the transplant rule of thumb is "It'll last two years or twenty years", now that I have made it for two, my goal is 20!
What has happened since then? Well, I didn't stop working during my recovery (mistake); and I quit my job of 9 years six months after my transplant. Then I took a year off, wrote and went to school (who says 43 is too old to keep learning??? - well, my banker for one! How to watch your bank account spin down when you are paying for COBRA! YIKES!!).
I moved out of "my little crackhouse" to the suburbs of NYC of course irony of irony, NOW I am in a house big enough for my NxStage and all the supplies... hah (I appreciate space so much more now). In a big career change, my boy kidney and I are working in dialysis advocacy. It is amazing that when I was on dialysis, I would sit at my computer at my job at a Law School and slack off by reading IHD. Now, I am off dialysis for the forseeable future, but my work life is all dialysis all the time and I LOVE it! It is the stories of EPOMAN, Goofynina, OKarol and so many others that have been a source of support and inspiration for me, and when I work with patients and practitioners, I listen to their stories, and on the inside I smile, knowing that I have known and loved people with similar stories. Now THAT in itsself is the ultimate in job satisfaction, and I don't think I would have had it were it not for a simple websearch when I first started dialysis and stumbled upon IHD.
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