Top of the List
Marshall was admitted to the hospital on May 11th for cellulitis. They have been treating him with antibiotics and pain meds as he is in a lot of pain. He has had cellulitis a couple of times in the past, originally brought on when he was injured by some coral on one of our trips to Mexico. Because of the cellulitis, his MELD score has jumped up to 33 today, and the doctors told us that he is actually at the top of the list for his blood type. They are expecting that his MELD will go back down as he is treated, but they will be able to keep his score at that number for a week. We are all hoping that he will be able to receive an organ while his score remains high.
Read MoreLooking Forward, a New Year
As we begin a new year one can’t help but look back at what has passed and ponder what lies ahead. The end of the last year was particularly hard, I spent more time in the hospital between Thanksgiving and New Years than I have in any other similar length of time. A total of three hospitalizations, two coma’s and a Christmas I can’t remember. It would seem that the new year could only be an improvement. As I do look forward and contemplate the new year I am struck by several stark realities. My health will only continue to decline until I receive a transplant. My gallbladder has already failed and I live with pain from that and my liver on a daily basis. My MELD score seems hopelessly stuck in the low twenty’s...
Read MoreActivation Milestone
I have been "listed" for sometime but all that really means is that you are being monitored and tracked by UNOS (www.unos.org) and submitting lab test at the prescribed interval. You are not actually "waiting for a call." Activation requires another round of testing to ensure no major changes in the health of you respiratory, cardiovascular or other major organ groups.
Read MoreThree Month Pre-transplant Follow-up
Today was my three month pre-transplant follow-up visit with the Liver Transplant team at Mayo Clinic. It is hard to believe that it has already been three months since the initial transplant evaluation and it has been 9 months since my diagnosis. The last three months have been very bumpy. At the time of the initial evaluation I was feeling worse than I had since my diagnosis but still tolerable. In the ensuing weeks my fatigue level increased and my energy level decreased to the point that I could barely work 5 – 6 hours per day and I spent the entire weekend sleeping trying to get rested enough to face the next week. This was combined with nausea, vomiting and insomnia. It seemed like life was getting to the point of unbearable. I did not...
Read MoreMayo Transplant Evaluation
Mayo Clinic is an interesting place on several accounts. It is absolutely huge occupying no less than six buildings all between 10 and 18 floors. It is connected to most of downtown Rochester by a series of pedestrian subways and sky bridges. We can walk the three blocks from our hotel to the clinic without going outside. This is particularly nice since we has the first snow of the season last night. The scheduling system is also remarkable we showed up at our first appointment and were given an "itinerary" of my tests and appointment for all four days. This included several large open blocks of time which we thought was odd. As the days have progressed they have added a number of additional tests and appointments until now we have a completely full...
Read MoreMore Surprises
This week is off to a rough start. Aside from a log week with out of town visitors at work last week it was a short weekend and I didn’t get much rest. I am feeling like I am on the verge of getting sick and an emergency at the office had me working over 12 hours on Sunday and that took all I had left in me. There was no way I could pull myself out of bed yesterday and slept for about 18 hours. This is remarkable because lately it seems I don’t really sleep but I think my body was in a near comatose state. This morning wasn’t much better. I still feel spent and like I am getting sick. All of the communities around here are overrun with the N1H1 (swine) flu and a number of the schools are closed. Right now that is one...
Read MoreYou Can Give Life
One Man’s Story Trailer
The last 6 months of a two year journey to receive a liver transplant. Told in one minute of pictures and music.
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