Alan has a follow-up appointment with his transplant surgeon at University of Wisconsin Medical Center on September 19, 2017. We are hoping for some good news.
After Alan's bout with CMV for over 7 months (from November 2016 through June 2017), and his persistent nausea issues we are seeking reassurance that Alan's transplanted pancreas is still functioning well.
Apr 23, 2017
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...
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...