So Christmas has come and gone and I am approaching the one year mark since working. While I certainly miss working and adjusting to life on disability pay has been challenging, going on disability was the correct decision. I still stay in contact with people from work and am able to attend the odd event now and then so I can keep some contact with volunteers I’ve worked with for years. I still hope to get the transplant done in the coming year and after recovery hope to return to the BSA – somewhere.
This past year has not been a total waste of time, several great things have occurred. I have lost over 30 lbs. since I started going back to the gym! My daughters both had good years – Carolyn in adjusting and thriving at Ithaca! and Kate & Kenny got engaged!! We had a great family vacation in Rhode Island and just had a very nice Christmas once recovered from the ‘no transplant now’ decision. It should be a fairly quiet New Years celebration. Carolyn, Meg and I went into New York City yesterday as I had the day off from treatment and we visited the Metropolitan Museum, saw the lights on 5th Avenue and the tree at Rockefeller Center and then a nice dinner in Times Square.
The problem with waiting for a paired donation transplant is that their really is not anything I can do to move the process forward. This past year I had things to do – I had to lose weight, get approvals from my other doctors, and then get my blood chemistry acceptable for transplant, but now it relies on the ability to find a recipient for Meg’s kidney who has a donor whose kidney I can accept. Intellectually I know this will work but it just seems crazy to have to be beholden on others and there is nothing I can do to speed up the process.
Meg and I met with her transplant surgeon at Yale yesterday. He is also the head of the kidney program at Yale. We are in the 1% of transplants that get cancelled at the last blood match due to an effort to avoid a rejection. While it all seems logical why we had to cancel, and I understand that, it is still a bitter pill to swallow. The good news in all this is that I am still eligible to receive a transplant only it won’t be from Meg.
Our best option is the ‘Paired Exchange” program where Meg donates to someone who has a donor that is a match for me. A lot needs to happen before this can become a reality. Meg’s information will go into a database to see if anyone can receive her kidney and then we will see if their donor is a match for me. This may involve only 4 people but some paired exchanges can become more involved and have like 8 – 12 people involved to get the perfect match for everyone but also a match for me. They will first search the donors/recipients within the Yale Paired Transplant program and then go to the two national databases to search for recipients/donors that match with us. Once matches are found they need to coordinate the surgeries of all the individuals, the schedule of the surgeons involved and also ensure transportation for all the kidneys to their correct recipient – and all this has to happen at the same time! Apparently it is not like we originally thought where Meg and I go in for surgery at the same time in neighboring OR’s.
We signed up for this yesterday and now Meg needs to do some additional blood work, and then they are starting to look for potential recipients for Meg’s Kidney. The surgeon said the average wait time for this is in the 4-6 month range but the Paired Exchange Coordinator told us she has people who have waited for up to a year. This is not the same plan we originally envisioned but it will work and is our next best option. So we are back on the daily dialysis treadmill for now. I have survived a year and a half on dialysis and am certain I can survive another year or more if I need to get the transplant.
Well, today was originally supposed to be the day of my transplant surgery. Friday we were called late in the day to tell us the final results from the blood matching we had drawn on Monday came back and the transplant is off for now. Apparently there is a strong possibility for rejection so erring on the side of caution it has been postponed for now. Meg and I have an appointment with her surgeon this afternoon to find out what, if anything, we can do to get this blood level changed or what the next steps would be in finding a different donor, paired exchange or just waiting for a cadaver kidney. This was a big blow and very disappointing to say the least. Now everything is in a state of flux and we are uncertain as to what the future holds.
Last week I met with the dietician, pharmacist & social worker and everything was about what I can and can’t do and eat after transplant and how to best adjust to this new life. They gave us all kinds of information and notebooks with more information and now it all seems useless. I know that at some point we still may need it and go thru the transplant but now that seems a long way off.
On the plus side – Kate and Kenny came to visit and since they were taking some of their vacations and they can’t save it for later use, they came to Shelton anyway so it is nice to visit with them. Carolyn comes home today from Ithaca so we will all be together for a short visit. It is also weird being all set for christmas now with 10 days still to go. We had a deadline to get everything done and for the most part we did all the shopping and wrapping. There is still some last-minute items to get that I was going to get this past weekend but now can get at my leisure over the next 10 days. We hadn’t done any food shopping yet for Christmas since we didn’t know yet what we would feel like but now we can do whatever we want – and dialyze at the same time.
I think that having to continue with treatments is the biggest blow. I was counting the days until I could stop dialyzing and was down to only 3 treatments left but now I had to place and emergency order for more supplies. On Wednesday they will drop off another months worth of dialysis supplies and we are back on the daily dialysis treadmill! Ugh!
So Meg and I had our final office visits prior to the transplant yesterday. Yale has become concerned about the PTH (Para-Thyroid Hormone) level in my blood. It has been slowly elevating over the past six months. My nephrologist has tried to bring it down a couple of ways to little result. So last week Yale called all in a tizzy about the level and they also called my training nurse. I met with my nephrologist Friday and he prescribed another medication that should lower the level. So now I have another blood test on Friday for the PTH level. If that stays the same as last week or goes down (which is the hope) we will be good to go, if it goes up we may be postponed. One of the surgeons explained that there are two schools of thought regarding the PTH level – one (my nephrologist and one of my surgeons) is that the PTH level doesn’t matter and that transplant is the solution to that problem. The other thought is that patients with high PTH levels prior to transplant have a greater chance of rejection. The transplant coordinator is in this camp and my surgeon is leaning that way. So we will do the next blood test with hope.
We also had meetings with both of our surgeons, a dietician, a pharmacist, a social worker, an anesthesiologist, had a chest X-ray, and completed pre admission screening. It was a lot of information and I was given a notebook with post-surgery instructions. While in the hospital I will meet with all these people to review the recovery process and steps to take not take etc…. After transplant I will meet twice per week at the transplant center for the first month then once a week for the next month. Meg can drive after like two weeks and I should be able to drive after a month. Meg should be home by like Thursday and I may get out Friday or Saturday!
We like both surgeons. Megs is the head of the kidney transplant program and mine is the overall head of the transplant center and does kidney and liver transplants and has done extensive work in living donor kidney transplants. His name also is David so that is a good sign!
Kate will be here the day before the surgery and Kenny will be joining her to wait with her during the surgery. Kate will be with us until I am out of the hospital so that she can get me home. Carolyn is driving home on the day of the surgery after completing finals and she is home until she goes to Granada Spain at the end of January. So we have lots of support in place and feel confident we have done everything we can to make this a success.
So next week is my final exam at Yale before the transplant and difficulties are looming. The Transplant Center called and told me after reviewing my latest blood work from November my PTH levels are approaching the level where we have to post pone the transplant. Now they won’t tell me what to do to get this in check only that it is too high. So I called my training nurse and she tells me they are telling her the same thing but that she thinks they are being unreasonable. I did my regular blood test on Tuesday and on Wednesday when I brought it in to the clinic I also had to give some more blood for yet another test. Now I have an appointment with one of the nephrologists today. Hopefully my blood test results will be back by then and everything will be back to normal but the stress from this is tough. If they could only tell me to quit eating XYZ or take this prescription or something that would fix the problem.
So Monday I go to Yale for a full day of poking and prodding – starting at 7:15 AM with yet another Blood Test. They also want a urine sample and I would love to be able to give them one but I doubt that will happen as I haven’t pee’d in a year and a half! I will also have an EKG, meetings with Dietician, Pharmacist & Social Worker, a meeting with Meg and her Surgeon then I meet with my surgeon and then I have a complete physical. The afternoon is devoted to Pre-Admission Testing – no idea what that entails. Hopefully by the end of the day I will know if we are going forward with the date of the 16th for the transplant.
Obviously we will do whatever they say, not that we have a choice, but we have all the support in place for the week of the 16th including that both my daughters will be here when Meg and gets out of the hospital and Meg has every thing set with her work. Carolyn is home from around December 16th until she goes to Spain on January 25th. To postpone this to January is possible but some of the support we need will not be available and we will have to figure that out.
So with the start of December many start the “countdown” of how many days till Christmas or how many shopping days left to go or how many days in the end of the year. I am counting down most of those but what I am most anxious about is the Countdown to my transplant. Today is December 1st and I have my final testing scheduled in one week and the actual transplant in two weeks! The major concern is my weight. I have been fluctuating around my optimum BMI (Body Mass Index) and not able to get much lower. I gain weight every day and only lose any weight (water) on days that I dialyze. I have been trying to exercise every day, but my transportation just went to Ithaca for the next two weeks. Since Carolyn will finish finals the day I go in the hospital we had her take my car back to school with her since Meg and I won’t be able to go get her at the end of her semester. She will leave Ithaca when we are in surgery. So for the next two weeks I have to exercise at home or do yard work depending on the weather cooperating! So my final Countdowns include the number of days till my final testing – days till my operation – and the days I have left to complete my Christmas Shopping since I won’t have any time after the operation to do any!
Thanksgiving was great! Carolyn had a whole week off so the Friday before I did the round trip to Ithaca to get her and a friend from California that spent the break with us in CT! On the Sunday before Thanksgiving we went to Stamford for the Balloon Parade followed by lunch at the Dinosaur BBQ! Thanksgiving was fairly low-key since I had to dialyze before dinner and then I went thru dinner with the Dialysis Hangover so I didn’t really enjoy the meal. Friday Meg and the girls went to the Danbury Mall while I went to the gym and then did my shopping online! Kate and Kenny came Friday evening having spent Thanksgiving with Kenny’s family on Cape Cod. Saturday we stacked some fire wood while I had a crew to help and then did some small store shopping. Saturday night I took the whole crew out to dinner at a very nice local Asian Fusion restaurant – Red Lotus. Sunday we went to church and it was nice to have Kate/Kenny & Carolyn with us.
After Church we came home and had leftover Red Lotus for lunch then every one loaded up and headed back to Ithaca and Massachusetts. It is now back to Meg and I and our animals. The dog doesn’t seem to care but the cat misses having all kinds of people to pay her attention! The goal for this week is to basically starve my self and/or work myself to death so that my weight doesn’t prevent/postpone the surgery.