So the idea of having a Kidney Transplant is slowly becoming a reality. When I first started looking into a transplant it seemed like an unreachable goal, kind of like winning the lottery. While that kind of luck happens to some people, I don’t count myself as that type. Not that it couldn’t happen, but I don’t think it very likely. So I preferred to not think about the possibility rather than dwell on all the things that needed to happen first. In February I went for the initial screening at the Yale Transplant Center and not much was done to change my mind. It seemed to me like I might have to wait several years on the transplant list and at that point in my treatments I was still pretty weak and was having regular problems with my treatments. My brother and sister both wanted to go thru the testing to be a donor but both have had their own significant health issues and I didn’t want to put them thru the strain of the transplant, and Yale cooperated by agreeing with me and my diagnosis. I thought my daughters might be possible donors but didn’t want to subject them, mainly due to the interruption it would cause in their lives. One is just starting her career and the other is in college and I didn’t want to ask them. At the initial screening we found out that Meg could be tested to be a donor. I thought this a long shot, but worth it. I was excited and surprised when the results were for a match although she would need more extensive testing. Well she has completed the testing, the results are good and now we are ready to proceed pending my weight loss.
It is hard to get an accurate picture of my weight as I put on weight daily and only take off water (lose weight) when I dialyze. Also there is a 4 lbs. discrepancy between my scale and the scale at my doctor’s office. So I have somewhere between 8 – 14 pounds to go. In the end the only scale that really matters is the one at Yale Transplant Center. I did have a good doctors visit with my nephrologist yesterday. All my levels were fairly good except for my phosphorus which we just re-checked. I did talk with the dietician about more strategies to lose weight and improve my diet. Hopefully with school starting for Meg and Carolyn going back to Ithaca, life will get back to a normal routine and I can concentrate on dropping these last pounds.
My treatments continue five days a week and on my off days I have had some energy to do things with my wife. In the old days I would call them dates, but now it is more like and evening out – movie, shopping, overnight trip etc… During my treatments I have been planning a major trip to take with Meg after/if this transplant happens. While no decision has been made yet, it will probably have to wait until after the wedding and probably even for Carolyn to graduate. We are looking at an Alaskan Cruise or a trip to a national park like Yellowstone, Grand Canyon or Yosemite. I am hoping that over time to get to all of these and more places that I haven’t even thought of yet. While six months ago this was only a dream, today it is a light at the end of a long tunnel.
We made it thru the weekend festivities and survived! It was a lot of work but well worth it in the end. Meg and I put on an engagement party BBQ for Kate and Kenny this past weekend. It was a beautiful day on Saturday and the night cooperated and everyone had a nice time. I spent most of Friday working my smoker to get the pork ready. We did two large Pork Butts (total of 20 lbs.) for pulled pork sliders. On Saturday I smoked chicken wings, we also did shrimp and some salads and lots of beer and wine and we had enough food to feed a small army. Kate and Kenny came the day before and helped get everything ready both inside and outside for the party. WE decided we need to entertain more because this forces us to get the projects done we have been putting off. My back yard looks better than it has in a long while and our house inside is cleaner than its been in a while. It was fun to put on this event. Both my parents and Meg’s mom did engagement parties for us and we wanted to do the same for Kate. We were also pleased that Kenny’s parents, sisters and grandfather were able to come help celebrate with us. Carolyn and Niels were able to get the night off from camp to come down for the party and were a big help cleaning up at the end. While I didn’t think I had over bought for this, I seem to have a lot of beer and wine left over. While I am sure it will find a home at some point I am not drinking nearly as much or as frequently since we are trying to lose weight so we can move forward with the transplant.
Meg spent another half a day at Yale this week to finish the testing for the transplant. The next step is the review by the transplant panel that will make the final decision about whether or not to proceed. Hopefully our case is being presented at the next panel meeting and we should have a go ahead in the next two – three weeks. I only have another 10 pounds to lose as well as some final testing and then they can schedule the procedure. It is starting to get very real. We hope to complete this all by the end of the year. In January Carolyn is scheduled to go to spain for the spring semester and we have Kate’s wedding in June so it would be nice to be off dialysis especially by the wedding.
My treatments have been going alright. I did miss one last week due to an air in the line issue that I couldn’t resolve and that the tech support couldn’t get fixed over the phone. So I was instructed to abort and I lost some blood but as I hadn’t really started it was only a small loss. Then they sent me a box and bags to send back the cartridge to Nexstage so they can check it out to make sure it is not a manufacturing issue. The problem was that I had an off day on Saturday and then this happened on Sunday so by Monday’s treatment time I really felt awful. Once I finally go going I slowly started to feel better and after two or three days of regular treatments I feel back to normal – or at least normal on dialysis feeling.
So things have been incredibly hectic the past several weeks and I haven’t had time to post anything here. While I am on dialysis three to four hours five days a week, posting while on dialysis is problematic. I can type one-handed enough to get to web sites or the occasional email, but typing a full blog post is very difficult and the couple of times I tried it came out all messed up and I had to delete them. The past two weeks have included a lot of traveling, shopping, medical testing and the usual yard work & house cleaning.
We went to Providence weekend before last to visit with Kate and Kenny and to look at possible venue locations for their wedding reception. We looked at four locations and two would work very well the other two were kind of boring – typical hotel ballrooms. We also had a chance to visit the Providence on a Water Fire evening. This was a very cool event with over 60-80 fires in the middle of the river over the course of like a mile with both banks jam-packed with people. It also has a craft fair and food vendors etc… We had a very nice seafood dinner prior to Water Fire and then a very nice evening. I think we have made some decision regarding the reception but I must remain silent until I get the go ahead from the powers that be…
This weekend we went to the Adirondacks! There was a memorial service for a former staff member of mine who passed away this past winter. A bunch of former staff members and other family and friends of Brian’s gathered at camp to remember him and celebrate his life and love of Nature and especially Sabattis. We then had a nice visit at camp seeing how things have both changed and remained the same over the years. We spent the night in family camp visiting with former staff (and now their young children). We also visited Long Lake, Tupper Lake, Saranac Lake, Lake Placid and Keane Valley – lots of lakes and we saw a bunch of mountains also. It was my first visit to the Adirondacks since 2003 and it was great to be back.
So in-between these two action packed weekends we did lots of shopping – for a new car and for our upcoming engagement party/BBQ this coming weekend. We ended up getting Meg a new 2014 Subaru Outback which after its maiden voyage to Sabattis looks like it has been thru a war. Meg also spent a day at the Yale Transplant Center for testing and evaluation. Also I continue to do my treatments. Since we were away these included starting late a couple of times and going till like midnight. After I get off treatment my blood is still pumping at the speed of the dialysis pump and I can’t sleep until it settles down. This week we are busy getting everything ready for this engagement party and the forty of so people who will be here to help us celebrate. We are going to smoke some pork butts, grill some wings and boil some shrimp! Oh and we just may have some beer and wine!