Heart Biopsy Results

First before I get started, I hope everyone enjoyed seeing my beautiful angel, Jazmin. She is my hero! I wish my donor family love and strength each day. They are always on my mind. Sonia will be meeting me for the first time the weekend of the 30th. I'm so happy to finally meet her and give her a big HUG! It will be a very emotional moment and one that will take my breath away. That is what life is all about. Its not how rich you are or the finer things you have, but how many moments take your breath away! I have had many moments like that. To name a few, the day my sons were born, the day Mark and Erin were married, the places I have been so lucky to see, and the ultimate moment in my life happened on September 26, 2008 - the day I was given a second chance at life by this beautiful girl and her family. Grateful is the word!


So, yesterday was my monthly heart biopsy. All went normal and Mark and I spent the night at the Fairmont in San Jose. We had a wonderful dinner the night before in our room because I was not up to going out. We enjoyed breakfast the next day in our room again and then went to the hospital. I got my results this afternoon and my heart biopsy result was a 1R which means slight rejection. The doctors are not concern about 1R rejections. I did have some changes to my medicines. My cyclosporine count was low (158) and they adjusted my Gengraff (immuno suppressant drug) to 125mg AM and 150mgPM to help bring the number up to 200 to 250. So I started that tonight. Also, Stanford felt I should not be taking Presidone (steroid) anymore being that I am on Decadron. Dr. Dana feels I should stay on it but lower my dose from 5mg to 2.5mg. So I will take that dose tomorrow.


Erin came over tonight and brought her friend Amanda. I hope Amanda won't mind if I tell her story. Armada is 26 years old and two years ago had Stage 4 Lumploma cancer. She was on massive chemo that wasn't working. She was dying and her only option was a stem cell transplant. I asked to talk to her. We met last year at my trailer at Clear Lake. She spoke to me about the stem cell transplant but that was way before the heart transplant or even the chemo treatment. So fast forward to today and I'm faced with the decision to have a stem cell transplant. I wanted to hear the good and of course the bad. She didn't sugar coat anything, which I appreciate that. I need to know the truth. She is completely cancer free after two years and looks and feels healthy. Her thoughts are "why feel crummy every day on these drugs or even stronger chemo, when you can have the stem cell transplant and yes feel awful for thirty days but then feel good after. Not to mention the chance of going into remission. Now there again I don't have cancer and there is no cure for Amyloidosis. It will always be in my body. The goal is to stop the production of new Amyloid being produced and attacking my organs. My future will include more chemo or second, third stem cell transplants. So I have decided to get more information and I will be contacting Stanford tomorrow to set up the appointment to meet with the stem cell transplant team to discuss stem cell transplant.


Tomorrow I have lab draws of blood for chemo lab tests before chemo on Friday. Chemo treatment is Friday at 3:00PM. I can now have a flu shot and will get that on Friday. Also, Dr. Dana said I can get my teeth cleaned again and made that appointment. Also, sad to say but the drugs are really effecting my eyes. My vision is so blur. I made an eye appointment for next week to get that checked. I have reading glasses everywhere. I am having trouble writing checks at the store and can't even see the number ringing on my cell phone. So sad how these drugs cause other problems such as blur vision, weight gain, hair growth, cancer, bone problems and much more. But I need them to keep my body from rejecting my beautiful shared heart and I will do whatever it takes to prevent that.


It's 10:30PM and hopefully taking Decadron today I won't be up wired at 2:00AM. If so, I have made a list of things to do. All the cabinets are cleaned so I can't do that but decided to work on my photo albums and my Italian tapes. So I hope for sleep tonight.


Remember enjoy those moments that take your breath away!


love,
Debbie