A Day At Stanford

Today I spent the day at Stanford meeting with Carolyn, social worker for the stem cell transplant clinic, Dr. Sally Aeria, stem cell transplant doctor and Zoe, nurse coordinator . It was a long four hour meeting but cleared up some many misconceptions I had about the stem cell transplant procedure.

Carolyn discussed the details involved in the stem cell transplant as it relates to hospital stay, hotel/apartment stay, diet, precautions, and the dos and don'ts. As she stated, I will be staying close to Stanford the first week while I undergo injections of a drug called neupogen that stimulates the production of stem cells. After the one week injections, my stem cells will be removed and stored (frozen) until transplant day. After one or two weeks at home, I will be admitted to the hospital for about 10-12 days. During this time I will undergo massive chemo using the chemo drug Melphalan. What this will do is destroy the Amyloid production in my body prior to the new healthy stem cells being put back into my body. Yes, I will experience all the nasty things associated with chemo such as nausea, mouth sores, hair loss and pain. Although this does sound awful the doctors have assure me that they will do everything to relieve whatever I am feeling. Once the doctors have determined the day, I think she called it day Zero, my stem cells will be placed back into my body. These are healthy stem cells that have not been affected by the disease. They will take over and multiple and make new healthy stem cells. Dr. Aeria stated that I will be feeling healthy and normal at that point. I will be released from the hospital to begin the hotel/apartment stay for approximately 2-3 weeks.

During the hotel/apartment stay there are many restrictions I must follow. No visitors allowed except close family and visitors who do come must be healthy and follow the precautions of hand washing and wearing a mask. I cannot cook or prepare any food. Matter of fact the doctor said the kitchen is off limits to me during this time. All food has to be cooked and processed not raw. I cannot go out to restaurants or have take out during this time. It is very critical during this time to follow the strict guidelines set forth by my stem cell transplant doctors. All these precautions are to avoid infections. After the hotel/apartment stay I will be released to go home to recover. The restrictions will still apply at home but some will be lifted such as food preparation. Visitors are still required to be healthy and wear a mask. Dr. Aeria said I will not be back to normal immune system function for 6-9 months. My immune system will still be at what we call immune suppress due to the heart transplant but not as low as when going through the stem cell transplant.

So when will this all take place. At this point, Dr. Aeria said that the best time to have a stem cell transplant as a heart transplant patient is up to one year post transplant but ideally the perfect time is 6-9 months post transplant. That means end of March to end of June. Now all can change if my numbers go crazy or if amyloid starts depositing into my heart. I am scheduled for a heart biopsy to check for amyloid on the 17th of March. I have told Dr. Aeria that if one of those two things happen, then I will schedule the stem cell transplant immediately. So at this point my hopes are to continue the chemo treatment of Decadron and Velcade and wait the two or three month period. So only time will tell.

I received my 3rd dose of the second course of Velcade today. Just as last week tonight I'm feeling the effects like last week which included soreness under my neck, shoulders, arms and down the middle of my back. Hopefully tomorrow it won't be worst. I don't have any plans tomorrow and will rest and relax.

I thought today as I sat there at Stanford how did this all come to past. Just last year my life did not include surgery, doctors, hospitals, pills, transplants and all this crazy stuff about my disease. Where are you today? Realize how things can change and how short life is. Enjoy each day and moment on this earth. I will fight this disease to the end. It will not get me. But one thing is for sure life will be different from now on. I want more moments! I want more moments that take my breath away! That is what I want to live for!

Enjoy the moment!

Love,
Debbie