So my recovery is continuing and I feel stronger every day but I am starting to be bothered by the side effects from the various anti-rejection drugs and steroids that I am taking. My Nephrologists at Yale are trying to get my dosages under control so that I am not bothered by the side effects but it is complicated to get the dosages correct. My wound is healing nicely and I have very little discomfort from it but it is still leaking a little bit and that is causing a rash under my belly that is starting to hurt a lot. Also the prednisone is causing some issues with shaking in my hands that makes writing, typing and eating difficult. They did just lower my dose so hopefully the shaking will get less. I am also putting on weight which is not good. It is to be expected but I can’t afford to put on any weight. So far I am up about five pounds since my transplant. Now they tell me that the average person puts on like 25 pounds after transplant and I am hoping to not do that. The problem is that after my transplant I now have an appetite and some of these drugs amplify that and you can get into the habit of snacking all the time. I am trying to limit my snacking and so far it is going well. I have also started having night sweats which is new. I will wake up at like 5 AM covered in sweat and my t-shirt soaked. I haven’t suffered from some of the other side effects like the shortness of breath, chest pains, diarrhea, and hair loss.
So this week I have four doctor visits although one is with my dentist for a crown that cracked over the weekend. I have my normal Monday and Thursday clinic visits and then on Wednesday I go in to have the stints removed and the staple that is attaching my eureter to my bladder. I am kind of nervous about this just because of how they plan to go in thru my urethra to get at my bladder. I am not sure how they get the stints that are securing the blood lines from my new kidney to my arteries – and it is the not knowing that bothers me most. Also the fact that they told me I will be awake thru all this. I will post how it happens after the fact.
So this weekend is Easter! Kate and Kenny are coming this weekend. Hopefully we will finalize a bunch of the final wedding plans and also celebrate Easter. I think we are having Rack of Lamb and I am trying a Baked Alaska. Carolyn is halfway thru her Northern Europe bus tour. Today she is in Amsterdam then she will go to Brussels and end in Paris and fly back to Granada on Easter Sunday – her birthday! They spent last Friday and Saturday in Prague and then the first part of this week in Berlin. We hopefully will be able to Skype with her when she returns on Sunday and hear all about her trip. Then she has two weeks of classes and then they go on another trip with the whole group of exchange students and professors to Morocco. Sounds like she is having a great time and Meg and I are very envious!
So my recovery from surgery continues and I am now feeling much better than when I first got home after surgery. I still go in to Yale for check ups twice each week. My kidney function continues to improve. My Creatinine level continues to go down. The creatinine clearance test is used to estimate glomerular filtration rate (GFR). GFR is a measure of how well the kidneys are working, especially the kidneys’ filtering units. Before the transplant surgery it was at 11 and today it was down to 1.3. My nephrologists are very happy. They didn’t think it would get much below the 1.5 level due to the age of the kidney that I received but they were happy with the 1.5 level. Also, today they took out the final staples in my incision. They took out most of them on Monday and the last two today. Next week I have an appointment to have the staple that is connecting my ureter to my bladder and they will also take out the stints that connect the two blood veins from my new kidney to the arteries. This is an outpatient procedure but it sounds uncomfortable.
The end of last week I was cleared to go out some. I can go to the mall and walk since it is still too cold outside although that is rapidly changing, finally! Meg and I started with doing like only a lap and a half at the Trumbull Mall last week. We have been going every day and today we did four laps of the mall which my pedometer says is about 1.5 miles. Considering that when I got home from surgery I got winded just going to the bathroom and now I can do 1.5 miles. Hopefully next week I will be cleared to drive and then I can start going to the gym.
Semana Santa, Holy Week in Spain, basically shuts down everything and all the students that are doing Home Stays in Granada are asked to vacate their homes for the week so their hosts may have family in or they may travel to visit family. So Carolyn and several of her friends have made arrangements for a bus trip thru northern Europe. Tonight they flew from Malaga, Spain to Prague then they will bus to Berlin then to Amsterdam and lastly to Paris. They will spend 2-3 days in each city and will have tour guides to see the sites and still have some free time to explore. They will return on Easter Sunday (which is also Carolyn’s birthday) and then start back in with classes on the Monday after Easter. Meg and I are incredibly envious and wish we could do a trip like this – it sounds like a blast.
Wedding planning continues despite the recovery. The invitations which we ordered the day before the surgery have come in. Now we are double checking the list of invitees to make sure everything is perfect. Then we have to print both inner and outer envelopes, stuff the envelopes and seal them and then stamp them. Everything has to be done to mail them by around April 15th. We are also finalizing the final vendors for flowers, cake, limousine, and wedding favors. I am sure there is more to be done but that is what I can think of at this point. Meg was able to go to the first Wedding Dress fitting last weekend in Providence. I am sure it is going to be a great party – we Rennie’s know how to throw a party! My brother and his wife and my sister are all coming and we are all staying a couple of extra days in Providence – we don’t see each other that often so we try to make the most of it when it happens. We are under the 90 day mark till the wedding so there is still a lot going on but I can’t wait for the wedding and all the hoopla!
So my recovery is continuing and I notice improvements every day and less pain – until today. I have been having some continuing pain in my incision which is weird and I just don’t feel as good as I have been feeling. Usually I don’t feel it at all and only have pain when I get up or down and then when I cough (a lot of pain when I cough). I am walking better although I get winded when I do too much. So this week I had three trips to Yale. Monday I went in and saw the surgeon (and they drew blood). He said things are healing nicely. Thursday we went back for the big meet and greet (more in a bit). Friday I saw the nephrologist and drew blood of course. My kidney function is doing great. My creatinine level is down to 1.5. It was at 11 when I went in for surgery. This measures the amount of impurities in the blood. they don’t think it will get much lower but they are happy with the 1.5 level. I go back twice each week for the next three weeks or so then once per week and eventually just a monthly visit.
Thursday was the big meet and greet and a public press conference. I met my donor – Patricia. She is from Mystic and was the altruistic donor that made this whole transplant chain possible. I can’t express my gratitude for the gift she of life that she gave to me. She came with her daughter who, like Kate went to Providence College. After a lunch with all the donors, recipients and the transplant team we did one on one interviews with the NBC Connecticut TV station which actually had cameras in the operating rooms. Then there was a press conference with all the donors, surgeons, and hospital administration people. In attendance were all the Operating Room Techs and Nurses, all the transplant center people and other hospital people connected with the surgery and lots of press people.
The surgeons reviewed what happened that day and who donated to whom. They started the first surgery at like 7:30 AM and finished the last surgery at like 6:00 PM. Patricia spoke about why she made the decision to donate. Then the four recipients spoke for a minute each about how we are doing and feeling. We all feel about the same. I seem to be doing maybe a little better but some of the other recipients have been on dialysis longer than I was. One guy was on dialysis for over 5 years. One of the donors was not yet on dialysis but was about a month away from starting. We all are very grateful to our donors and to the whole team at Yale. After the press conference I spoke with a reporter from the Connecticut Post and from another TV Station about the process and how I’m doing.
Thursday evening we were on several news reports and web articles. We started getting texts telling us that they just saw us on TV etc… Friday it was in the newspapers. A big article on page 2 of the Connecticut Post and Page 1 in the New Haven Register and the Hartford Courant. I hope that Yale gets lots of mileage and that they get more altruistic donors as a result. This one altruistic donor made new kidney possible for four of us and then we come off the list and four more people move up on it and they can get closer to their dream of a new kidney. I enjoyed my 15 minutes of fame but now it is time to concentrate on my recovery.
Success! So the transplant finally happened. We went in early Tuesday morning for a large paired exchange transplant with 4 donors and 4 recipients. Everything went very smoothly – a lot of hurry up and wait – and of course I proved to be a difficult stick for them to get an IV line in me. They tried twice when I was awake and failed and then they told me they would knock me out with gas and then put in a line. I woke with two lines in – one in the top of my wrist and one in my neck. I also had some new bandages where they had tried to put in lines and failed. Meg was the second surgery and I was the third of the day. the donor of my new kidney went first. I awoke around 3:00 PM very groggy and in multiple types of pain – but the good news was the morphine drip that I could control within reason. They came and did a sonogram which I wish they could have done while I was still out – boy did that hurt. I was told Meg was doing well and was already in her room, but that it would be awhile till I could see her. I finally made it to my room around 6:00 PM and was able to see Kate and Kenny who came for the week. Had a very rough first night, couldn’t sleep and was very uncomfortable with the foley catheter but happy to be producing something. Had lots of pain in the incision, which should form into a cool scar, and pain in my bladder which makes sense since it hadn’t been used in almost two years.
I got no sleep the first night and had lots of episodes of pain but it would come in spasms and then go away for a while. I did finally get to see Meg as she was walking around and in a room nearby mine which was nice but she was in a lot of discomfort as well. Was taken down for another sonogram and that took around an hour and more pain but it was getting less. I did finally get out of bed and sit in a chair for several hours in the afternoon. No real interest in food yet but did have a cup of jello. I was drinking water much except for ice chips for the pain in my throat. They got on me about drinking as I am now urinating and need to replace the water but for two years I have been on a limited fluids and now they want maximum fluids. At midnight they took out the foley catheter and now I have to go on my own which is very painful and also very frequently. I finally got a couple of hours of sleep that second night thru like 1/2 hour blocks interrupted by trips to the bathroom or the pee cup they give guys. The nights and days were filled with an endless line of technicians taking vitals and blood sugar check and blood draws. Also meetings with the dietitians, pharmacists, social workers, and physical therapists all to review my post operative plans. I have binders and medical plans for my drugs, and follow-up plans for future medical visits.
Friday I finally was able to walk on my own without the nurse of walker. I was finally eating a little and drinking lots of water so they decided I should go home. I was finally feeling a little better and the pain is becoming less. I did have a final sonogram and was finally able to go home on Friday afternoon. I feel more relaxed at home now and feel I can recover better here. I go back in on Saturday for another blood draw and have my first follow-up visit on Monday. I can’t drive or go out for anything but Clinic visits for the first month hopefully then I can get out and drive. Kate and Kenny are still here and they are great help. Meg is improving as well. On Thursday we go in for a clinic visit and the plan is that there will be a press conference and we will get to meet all the donors and recipients. This was the largest paired donation at one place in the State and Yale wants some promotion out of it to spur other altruistic donors.