We both had quite a bit of anxiety Wednesday night after seeing the echocardiogram and talking to the neurologist. Aside from the neurologocal challenges, the possibility of cardiac involement brings on an entirely new element to the process which has been our primary concern. We met first with the amyloid specialist on Thursday morning. That went about as expected. No new miracle drugs on the horizon. Sort of a "we've done all that we can do" at this point in time. He gave some helpful suggestions about trying to manage some of the symptoms. He looked over the results from the heart tests, and picked up the phone and got me scheduled to see a cardiologist who specializes in amyloidosis--the apointment was made for two hours later! I wonder how long that would have taken back home? The cardiologist was great, and very funny. He looked over the images, compared them to those of two years ago, and confidently declared I was no worse than I was back then. What the other doctor identified as new or additional thickening in the heart wall he explained were attributable to slight variances due to the different technicians taking the pictures and how they did their measurements. He took a lot of time showng me his findings and explained it to me in laymans terms. He greatly eased my mind and said he'd see me in 5-10 years. I can live with that--literally.
Ended my trip with a visit to my managing doctor, John Poterucha. Such a wonderful person. I have mentioned him before. He was the one who looked me in the eye when I was first diagnosed and said "I can help you". He has been my guy ever since. He felt bad and was disappointed about the increased neuropathy. But what I love about him is that he at least tries to do something. So I am now going to be on an antiobiotic to see if we can reduce the amyloid deposits. It worked in the lab on mice, but so far no similar results in human studies. His approach is why not try it out? It can't hurt, has minimal side effects, and we can always discontinue it if we need to.
Needless to say we were exhausted by the end of the day. We did get the chance to meet up wth our friends Scott and Gail whom we met three years ago. We had dinner and a chance to catch up, and plan to see them again next year. Slept in today and we have nothing scheduled all day. There are a lot of residents here getting released today for the holiday weekend. Most are only getting a short reprieve, others heading home for good. But far from the house being empty, its just a changing of the guard. New patients and caregivers continue to arrive from all over the country. All sharing the one common denominator: needing and hoping for a cure. Scarves covering heads balding from chemo, masks over their faces to protect a compromised immune system, skin yellowed from liver failure--they come in all shapes and sizes. And as they arrive and enter the doors here they are immediately welcomed as family. Names get exchanged, help is given with luggage, and helpful hints for living here at the Gift of Life are shared. Inside these walls they find love and support, and hopefully at Mayo, answers and cures. See you soon, Rick