About a month ago my immunosupressant medications were reduced again, and all indications are that the new liver is being well received in its new home. I have my blood checked every 3 weeks, and my enzyme levels are staying steady within normal range. I have been working 4 days per week for the last few months, and have tried full time the last 2 weeks. I get a little tired still, but it has steadily improved. My stamina is good, and I'm not getting too fatigued. So I may make the leap back to full time again soon.
I still have a number of lingering symptoms from the amyloid. My digestion is still affected. My appetite is not good, but I have managed to put a few pounds back on. I still have significant neuropathy in my lower body, but I think there have been some subtle neurological improvements. It seems I have a little more sensation to heat and cold in my lower legs and feet. I have been able to get some movement out of one of my toes which I have been unable to do for two years. My thighs remain really weak, so stairs and bicycling are very difficult, but I can do both. I have been able to do a few 4-5 mile bike rides with Jeanine. I am swimming a few times a week, and I have been able to resume golfing (have to ride in a cart). The golf is another place I can discern improvement. I've gone from trying to keep from falling down when I swing, to actually being able to play fairly well. I love being able to get out there and just have the chance to be outside, and be with some old friends in a familiar environment.
I will be going back to Mayo again the first week of July for my annual tests. We are hoping to be able to stay at the Gift of Life House that week, and plan to rendezvous with some old friends during that time. Jeanine and I feel we have weathered the worst of the storm, and are now trying to build new roads together. Many things we once enjoyed doing together are no longer available to us, but we feel blessed for the chance to continue our lives together and are finding new ways and activities to share with each other. At times the past few years don't seem real, and at other times, the trauma and stress of those events catch up with and overwhelm us. We are still doing a lot of emotional processing, and our relationship has remained as strong and supportive as it has ever been. We remain forever grateful to all of our friends and family who gave us so much support during such a challenging time. Our love to all. Rick