AMYLOIDOSIS

I wish I never heard this word!! As most of you know, this is the disease I have that caused the damage to my old heart. Yesterday, Markie, Erin and I went to a support group meeting in Walnut Creek for Amyloidosis patients. I have to say it was nothing like my support group for heart transplant patients.

The mood was very grime and hard core. The members do not hold anything back and are very clear about their disease, treatment and life expectancy. Up until now I have chosen to stay in a denial state about my disease because managing the recovery of my heart transplant has been overwhelming. Knowing which drugs to take, the side effects and getting plenty of rest has been a full time job. Now I'm faced with dealing with the disease that has caused all of this.

I have started the chemo drug Decadron last Wednesday and today I'm feeling the side effects from it. It started last night with swelling around the neck and some soreness on the shoulders and back. Dr. Kevin said it usually happens on the third day but mine chose the fourth day, I guess. I hope this is from the chemo drug and not anything with the heart. I have no pain with the heart just this soreness in those areas. I did have a busy two days going shopping on Friday and the support group meeting yesterday. So today and Monday I need to get plenty of rest before heart biopsy on Tuesday.

Dr. Kevin was at the meeting yesterday and said that Kaiser, Stanford and the Mayo Clinic have all confirmed a treatment plan for us. I guess we will know on Tuesday at clinic what the treatment plan will be and when it will start. Dr. Kevin has made the choice to follow the chemo plan for 3 months and will undergo a stem cell transplant next year. I am very scared of the stem cell transplant. To me that is scary! It involves 2-4 weeks in the hospital, hotel stay (again) after transplant and still there is no guarantee that it will put the disease in remission. Most of the patients yesterday had stem cell transplants and are not in remission. They are still on very high doses of chemo fighting this horrible disease. I know I have to fight and its hard keeping up the positive attitude when everything looks so bad. But I have made a promise to my donor, her family and of course to my family and friends that I will fight this. I will! So sometime in the near future I will have the stem cell transplant if the chemo drugs do not work. On November 25th I have an appointment at Stanford to discuss my complete workup of how much Amyloid is in my body and what my prognosis is. Until then, I have to continue recovery and managing my beautiful new heart. I could not have a stem cell transplant without a new heart. My old heart would not have made it. This is alot to think about and I need to come out of my denial and face the facts. I have a fatal rare disease that needs to be treated now!

One thing that came out of the meeting yesterday from each and every patient. I have tried to stress this in my blog every time I sign on. That is to enjoy every moment! We don't know how many moments we have left and each is special. Please take this to heart and enjoy life and the moments we are given. Don't measure the number of breaths we have but the moments that take our breaths away. I want lots more moments where it takes my breath away. Like the first time I saw my beautiful children being born, going to Italy, watching Mark and Erin get married. These are the moments that take our breath away and I plan to have many more!

Enjoy this beautiful Sunday and especially enjoy each and every moment it brings!

love,
debbie