So I am down to needing to lose less than 5 lbs. and then the Transplant Center will schedule my transplant surgery. I feel really good that in the past two weeks I have lost about 5 lbs. and can almost taste the foods that I will be allowed to eat again after the transplant. This has produced an un-anticipated side effect – I can’t sleep at night which I think is due to my constant thinking about the transplant – and everything that can go wrong. Intellectually I realize that thinking these negative thoughts is stupid. Everyone, including myself – family, friends, doctors etc… all think I will benefit from a transplant but still I stew about the negative possibilities. When I first went on dialysis I talked with two friends who had both had transplants – one had a lung transplant and the other had both a liver and a lung transplant. Both of these friends were very supportive and helpful and encouraged me in my dialysis – one personally when we saw each other at church and the other thru instant messaging online. Unfortunately both died this spring due to complications from their transplants. I know that their situations are much more complicated than mine but it is still on my mind that the only two transplant survivors I personally know are deceased.
Meg and I went out to dinner this evening and I told her about why I don’t think I am sleeping at night and my anxiety about the transplant. She agrees with me that this thought process is not something I should dwell on, but think about the benefits of the transplant. While she didn’t say it, I think she thinks I am acting crazy but she is far too nice a person to say that to me. We are hoping to schedule the transplant for during the month of November, possibly as late as early December. We need to get it done before Carolyn leaves for Spain at the end of January. Both of us want to do this surgery with both of our daughters here and also we need like two to three months for a successful recovery and if we don’t do the transplant before Carolyn leaves then we would wait until after Kate’s wedding. My dialysis, while a giant pain in the butt, does work and enables me some semblance of normalcy. I would prefer to be off of Dialysis for the wedding festivities however I don’t want to be only partially recovered from the surgery so we are trying to get it done before the middle of January!
My treatments are continuing without complications – although now that I mention the smooth sailing I have been having, I will have problems with my next treatment. My lack of sleep has not interfered with my treatments or my trips to the gym however it has drained my energy for most of my other activities. I have been reading like crazy, mainly late at night in vain attempt to get tired so that I will fall asleep. Eventually I will get so tired that I will sleep all night, but until then I will continue trying to lose the last 5 lbs.
So wedding madness gets into full swing this weekend! Kate and two of her college roommates (who are also attendants at her wedding) are coming to Shelton to start the wedding dress search! While I don’t think this will, by any means, be the end of this process – I know how Kate agonizes and procrastinates over big decisions – I think she gets that from me! I don’t think she will even wind up buying her dress from a shop in CT but she will eventually get off her duff and find some locations to look at near where she lives. Not sure how everything is going to work but I think I am charged with taking pictures of all choices to send to Carolyn – who wanted to be here for the shopping but can’t really leave Ithaca. All I know is that if she makes a decision about a dress, and Carolyn has not yet seen a picture of it – I will be a dead man!
Health wise – things are going slowly but in the right direction. I had my monthly visit with my nephrologist’s office this week. My monthly report card was good for all my levels that they check. My KT/V (adequacy of dialysis treatment) was very good and came in at 2.14 and my phosphorus improved from 5.9 last month to 4.0 this month which is a great improvement. My Blood Pressure was too low. It came in at 102/60 sitting and liked 75/50 standing. That morning my pressure was like 130/75 so I took my BP medicine which turns out to be a mistake. I wound up having to add Saline to my Blood like three times during my treatment that evening. I did get my flu shot at my visit. My training nurse will come out to visit me during a treatment to give me my epo shot and iron right into my blood line during a treatment. I don’t know why they couldn’t do that with the Flu shot but apparently I needed to get suck with a needle. Not that I am afraid of needles but with the number of needles that I tend to get stuck by it is only a matter of time before something goes wrong with a needle stick.
So my weight battles continue but I am slowly making headway. I am down another 5 pounds so now down a total of 15 since my first appointment with the transplant people in February. At that time they told me I needed to drop 20 pounds to be eligible for a transplant. So another 5 pounds to go. So my plan of being able to get the transplant done by end of the year is still possible but much needs to happen to make this reality happen. My weight goes up and down everyday. Days I do a treatment I can take off the water/fluids that I take in, and then on days I don’t do a treatment my weight goes back up more. On top of this I still need to lose some real weight. Also with the recent heat and humidity I tend to take in more fluids so that makes losing the last five pounds even more challenging. In addition I still have some more testing to complete but they won’t schedule anything until I drop the last weight.
Meg and I hope to get the transplant done by the end of this year. In January 2015 my daughter, Carolyn, is planning to go to Spain for the Winter/Spring Semester. While we don’t think anything bad is going to happen we would still be happier if she is at least in this country rather than abroad when we do the surgery. It is anticipated that Meg will be out in 1-2 days and I may have to stay in at least a week. It all depends on how well I adjust to the new Kidney and whether it wakes up and starts cleaning my blood right away. So all I really want for Christmas is a Kidney Transplant!
This past weekend was a busy one. Kate came home for the weekend and on Saturday we went into New York City to visit with Meg’s sister Amy and her husband Charlie and son Andy. They were up from Houston for a wedding in Brooklyn. We took a train in to the city then walked to Times Square and then took a subway to Brooklyn for lunch with everyone at the Dinosaur BBQ in Brooklyn. After a very nice visit and great lunch we went back into Manhattan to the 9/11 Memorial and the new Freedom Tower. It is all very impressive and moving. We had to leave on an early train since I was dialyzing Saturday evening. On Sunday we drove to Ithaca to see Carolyn. We didn’t help her move in last week so we wanted to see her living arrangement and make sure she is all settled – and her mom missed her! Her dad missed her a little also. We had a very nice visit and then took Carolyn to breakfast on Monday morning at Waffle Frolic before the five-hour drive home and then a dialysis treatment. Despite the trip into NYC and the trip to Ithaca I managed to maintain my weight without putting on more which is good. Meg is into her second week of school and our routine is starting to get back to normal – so hopefully I can concentrate on diet and exercise and get this thing done.