Just got home from Santa Clara Heart Transplant Center for monthly heart biopsy. It's so funny how all of us heart transplant recipients ask "whose doing biopsy today" and then we wait for the answer. We all have our favorites. "Jo Jo" from Stanford seems to be the one most like. He's very good - in and out quick! I like that!
Along with the normal heart biopsy today, Dr. Dana ordered a biopsy for amyloid. This is going to be the ultimate decision whether I moved forward quickly to stem cell transplant. My lamba light chain count only went down to 190. Wow its like chipping at cement! To be honest it makes me so mad at times. I will not let it get me! Amyloidosis is in for a big fight!!! Decadron and Velcade seem to keep it in a sable mode and that's ok. I want complete response.
I went to Stanford after biopsy today to see Dr. Kevin Anderson. For those of you who don't know, Dr. Kevin has Amyloidosis and had a heart transplant on 8-15-08. He has been my rock! Dr. Kevin has helped me get through some rough times prior to transplant and coping with the disease. Dr. Kevin is currently undergoing a stem cell transplant. He looks wonderful! OK, yes he's in the hospital, confined to his room but he's almost done. I want to be there! Dr. Kevin is so easy to talk to (that's the doctor in him). I sat there throwing question after question at him and he calmly answered in terms I could understand. So far things have gone well. He felt today was the first day he felt bad and gave himself a health score of 64. The mouth sores are beginning and he said next week will be the roughest. That is when his white blood cell count goes way down and there is so much risk for infection. His stem cells need to start multiplying and increasing his white blood cell count. That could take another week or two. He feels the stem cell transplant is worth it, so not to be on the high doses of steroids and chemo for long periods of time. I'm starting to understand it all. I agree. The steroids are awful!!!
I have an appointment next week at Stanford with Dr. Schrier. I have decided to start the preparatory procedures in April. Dr. Kevin said it takes about a month for tests such as bone marrow biopsy (YUCK, not another one), lung capacity test, blood tests and who knows what they have up their sleeve. Once tests have been completed then I will begin the stem cell transplant process which includes many different procedures. So if Dr. Schrier agrees I will begin stem cell transplant sometime late May. Once completed, if all goes well, the disease will be in complete response and I will be off of Decadron and Velcade.
Mom's birthday was yesterday and she came with me to stay at the hotel. We had a wonderful evening together. I ordered dinner in our room and we sat and watched "Dancing with the Stars". Ate hot apple pie and ice cream for her birthday. It was so much fun! I don't know where I would be today without Mom. She was there for the heart transplant and now again for the stem cell transplant. I'm lucky to have her!
So now I wait for the results from today. I don't think I will know anything about the amyloid biopsy until Friday or next week. I know it is going to be negative! As for the heart biopsy, that will be negative too! I want to go to Beverly Hills this weekend for my first big outing. Dr. Dana said ok to go if everything is ok with biopsy, which I know it will be. I'll post tomorrow results!
I posted before this post a poem from a friend in Virginia Judy, who also has Amyloidosis. She found my blog and started writing to me. She has undergone a stem cell transplant and has been very supportive. I talked on the phone with her for over an hour asking questions about the disease, stem cell transplant and chemo treatments. She sent the poem to me through a link from a man name Jay. Jay also has Amyloidosis but has been in complete response since 1994 after a stem cell transplant. So in his words, "Don't Quit" when things go wrong! The link to his web site to read his book, "Heart like Cement", the Amyloidosis patient survival book is http://sites.google.com/site/curedofamy/Home/my-page.
Have a wonderful evening!
Love,
Debbie
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