We are going through a difficult time and ask for your prayers and thoughts for Alan. To those of you who know Alan personally, please call him or email him. I know he will appreciate it.
Alan has been ill with CMV for almost six months now. We thought last month that we were in the tail end of dealing with the CMV and I called it "merely an aggravation”. It has gotten much much worse again. Because Alan is so immunosuppressed in fighting the CMV, he is currently dealing with thrush, with sinus and chest congestion issues, with inner ear issues that include vertigo and tinnitus, with sleep issues, chest pain, severe muscle spasms, nausea, dizziness, weakness, and so forth. Alan is frustrated and feels miserable. Right before Easter, Alan was so ill that we thought we might need to get in the car to drive to our transplant hospital in Wisconsin as we could not get a plane reservation during the holidays. We are exhausted and overwhelmed. We are back to the holding pattern of our being packed and wondering if we’ll be traveling to Wisconsin for further treatment.
We have been keeping Alan segregated from everyone and everything so that he does not catch anything and become sicker. Although the norm for CMV negative transplant recipients who are taken off the prophylactic amounts of Valcyte they stay on for six months or longer after transplant is to suffer a mild case of CMV (from the CMV positive transplanted organ) and create the antibody against it, some people such as Alan suffer severe CMV symptoms and are at risk of losing their transplanted organ or even dying. After Alan suffered severe symptoms for approximately two months, the amount of CMV in Alan’s bloodstream started to go down and we had thought we were beating the CMV. Even though he kept coming down with opportunistic infections and felt poorly, the CMV in his bloodstream continued to go down significantly over the following two months but a month or so ago, the amount of the virus in Alan’s bloodwork started to go up again and then a week or so ago the virus load in his bloodstream tripled that previous blood test amount.
We continue to believe that we will beat this, and that once we do and after Alan is put back on his regular transplant medications and the prophylactic amounts of Valcyte again for another six months, that when taken off the Valcyte next time that Alan will suffer a mild case of CMV for a day or two and then create the antibody against it. That is our hope and expectation.
Mar 15, 2017
Today is Alan's one year anniversary of his pancreas transplant at the University of Wisconsin Medical Center in Madison, Wisconsin. The transplant has been doing well. Thank you to everyone for the thoughts and prayers sent in Alan's honor. Alan and I celebrated last evening at the exact time when we received the call last year that a pancreas was coming for Alan from Texas.
Alan's only current issue is the CMV (Cytomegalovirus) which fortunately is merely an aggravation now and no longer a threat to Alan retaining his transplanted pancreas. Alan's blood tests show that he is still battling CMV but things are improving and the level of CMV is quite low but still present. Alan is also dealing with thrush so isn't feeling too well right now. We expect him to be feeling better once he finally beats the CMV and the thrush. We know he will beat these things and are looking forward to the future.
It has been approximately nine years since we have been able to camp or fish as we needed, since he became ill in 2008, to be close to medical assistance for Alan. We expect to be camping and fishing this coming summer. Our hope is to work on Alan's bass boat (which is a work in progress) so that we will be able to use it for the first time. When Alan had been hospitalized with his first bout of pancreatitis (during summer of 2008) and was in an induced coma for approximately a month, I frequently had the television in his ICU area on a cable channel that would broadcast fishing shows. My mother visited and was helping me with Alan at the hospital and commented several times about her father, my grandfather, who loved to fish and who had a bass boat. My mother always refers to her father as "Daddy" and she recounted for Alan fishing stories including stories of him with his bass boat. When Alan was brought out of the induced coma and was finally able to vocalize, it was clear he had something important he wanted to say. I expected him to tell us how much he loved us. That was not Alan's first comment. Alan's first comment was "Your mother bought us a bass boat?" How could we not purchase a bass boat for him after understanding that he had heard us throughout the induced coma and had been looking forward to fishing on his bass boat. We could not afford a working bass boat but purchased Alan a used 15 ft. Skeeter bassrunner, a 90 hp. motor, and a trailer to transport the boat. Alan has had to redo the entire electrical system on the boat and do other mechanical and structural repairs. Over time we have found a trolling motor for the boat, a fishfinder, new seats etc. and the boat may be close to being ready to hit the water. The plan is do a family camping and fishing trip for Alan's birthday this coming summer, stay at the Baby Doe Campground in Leadville, Colorado and use Alan's bass boat on Turquoise Lake.
Jan 12, 2017
Great news today! Alan's transplant coordinator telephoned this morning to tell us that after two months of Alan battling active CMV that he is finally beating it. He is still feeling poorly but...