I continue to recover well and feel great. Food now tastes like it is supposed to and I can't get enough, but I still haven't put any weight back. (the healing process chews up a lot of calories as I rebuild the muscle mass that I have lost.) But I don't want to fall back on my 'old' bad eating habits, so I am loading up on fresh fruits and vegetables. (mushrooms and green peppers on my pizza, just kidding).
Now my focus, now, is turning to the treatment of the amyloidosis. That is what got me here in the first place. To date, I have received no treatment for it because the heart took precedence.
I spoke today with Dr Witteles about a referral to Stanford to discuss my options. Dr Witteles is a Transplant Cardiologist at Stanford and was involved in the decision to get me on the transplant list there. He has a special interest in amyloidosis, as they are starting a program to treat amyloidosis here at Stanford. I am their first transplant in decades. (AL Amyloidosis, Leo had a transplant 4 years ago for AA Amyloidosis).
Dr Witteles set up an appointment for me to see Dr Stanley L. Schrier, Professor (Emeritus) in the Hematology/Oncology department at Stanford who is the expert there on the treatment of amyloidosis. In that visit we will discuss the timing and approach to the treatment plan. It could be to start on chemotherapy soon (when I am sufficiently recovered from the transplant) to control the amylodosis with the idea then to do the stem-cell transplant at a later date; or to use only chemotherapy, and if that reduces my serum kappa free light chains (the full name of those nasty proteins 'gumming' up my system) to a normal level, that may be all that I need. That would be nice.
I am so fortunate to have so many great doctors helping me to get better. I trust them with my life.
Life is good.
Dr Anderson (Kevin),
Sorry it took so long for me to let you know that I have been reading daily and thinking about you and your family from the beginning. It is good to hear that you are doing well, and I am praying that you'll be blessed with the utmost of care, needed rest and God's healing touch. Take Care, Susan
I am so happy that food tastes good for you again! That is a big deal! I was also extremely pleased to read that you are now able to accompany your lovely wife on walks and that you had NER! This is all great news. Keep up the good work.
We pray for you both each day. The other night after Dan said "Please bless Uncle Kevin," Elena interrupted the prayer to say "and Aunt Barbie." She knows how it's supposed to be. :)
We love and miss you guys!
Dear Kevin and Barbie, I'm so happy to hear that you are doing better. You sound so positive and upbeat. Of course, what great news no rejection. I keep remembering what you have told me about protein and will start focusing on that. I know how important muscle strength is for recovery. It's been 10 days today waiting on the list and I sometimes drift into space thinking "are they going to call today". I don't even know who would call? I'm really feeling tired this last week and decided not to be the hero. I am coming home at three and taking a nap, since I don't sleep at night. It feels much better. I'm so excited you are talking to the doctors at Stanford about treatment of the Amyloidosis. I hope my time is soon for the heart transplant and I can begin treatment for the Amyloidosis too. It's scary thinking that this disease is still in our bodies and not being treated. Please keep letting me and others know about the treatment and how well you are doing. It's so encouraging to me, especially on days when I'm down. I can read your comments and know there's hope. God Bless. Debbie Douglas
I am so glad to hear that you are doing well. I am glad to hear that you are able to eat now!! Food does wonders! Take care and my thoughts are with you and your family!
kevin: sounds like your doing great.continue on this path.the chemo makes a lot of sense & hopefully that will be all you need.
keep the blog going & i will be in touch soon after my return from vacation.
kevin: sounds like your doing very well.don't worry about eating too much .now is not the time to be dietting.you really need to build up your protein reserves.the chemo appears to be the way to go A& hopefully it will do the trick.
take care & god bless & i will write again later.
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