Moments Shared at Kaiser and Stanford

I knew today would be busy! It started out at Kaiser Heart Transplant support group meeting. I saw all my heart transplant friends, Ken, John, Matt, Linda, Leo and met new friends. It was a very good support meeting. I met a lady (forgive me I cannot remember her name, but know she will contact me) who was recently listed on the transplant list. Her heart was damaged by a virus. I first met her months ago, before I had my transplant, and could see how scared she was and how she denied having any problems. I was in the same space and could understand her feelings. I was happy to see her and her husband today. She seem prepared to accept the fact she needs a heart transplant. I hope we were able to help our new heart transplant friends move forward with their decision. It was definitely the best decision I made.


After the support meeting it was off to Stanford to meet with Dr. Shrier. I was so happy Gary and Debbie were there. Poor Dr. Wong, we jumped all over him with questions. He was so supported and answered all our questions. I got a lot of information today and want to share it with you. First, I asked about my Lamba light chain number which was 277. The first test I took before the heart transplant was 264 and then after transplant it went down to 206. So I was concerned when the last test result showed an increased to 277. Dr. Wong was concerned too until I told him I did not start Valcade until last Friday and that my blood work was done before first infusion of Valcade. He thought I had been on Valcade for a month and why was the count high. Dr. Wong felt much better knowing I had not started Valcade and felt the number was basically stable. So now time will tell. I will take Valcade with Decadron for 4 weeks and off for 2 weeks. I will be retested in 6 weeks to see what my Lamba count is. He also said that the type of Amyloidosis I have usually will go back to the same organ - my heart. I have been afraid that the disease will attack my other organs such as kidneys or liver. Now how long did it take to damage my old heart, no one knows. It could have been 20 or 30 years. One thing is for sure Kaiser and Stanford will not let anything happen to my beautiful shared heart. That is why they are aggressively treating the disease. I have had two heart biopsies for Amyloidosis and both were negative - thank God. Dr. Shrier came in and talked about the stem cell transplant. He stated according to Mayo Clinic I would be having a stem cell transplant in February or March. Of course, I said, you mean next year and he said no this year. That's when I started to cry. I said, "No". I'm not ready for a stem cell transplant. I want to give Valcade and Decadron a chance and if it doesn't work than I will do it. So for now we wait and see. I feel at least 4 months on Valcade will be a judge on where I'm at with my disease. If my lamba count goes totally crazy, I told him I will do the stem cell transplant sooner. I just got my life back and want time to enjoy moments! He was fine with that. So please say a prayer that the chemo will work!


I'm so thankful to have Kaiser, Mayo Clinic and Stanford treating me. I have the best doctors in the world caring for me. New research is developed every day and who is to say a new treatment for Amyloidosis won't be discovered. I have to have faith! In the meantime, I will do whatever it takes to slow the progression of the disease.

Mark comes home tomorrow. Maxwell played in the All Star Game tonight. Mark said he got one assit in the game and his team lost. Mark enjoyed the time he spend this past week with Maxwell. I feel better knowing Mark was able to see where he plays hockey, his friends, and where he lives. Maxwell loves living in Canada playing hockey and will stay there for next year.
I miss him so much but realize this is his future and he has to go after his dreams!


I need to check my lab results from today. My cycolospine count was too high last week at 284. So the heart transplant doctor lower my gengraff to 125 AM and 125PM. Hopefully, it has come down before next week's heart biopsy.


Have a wonderful evening and enjoy every moment in time! I enjoyed the moment I spent today with my heart transplant friends old and new.


Love,
Debbie