I have decided to go forward with the stem cell transplant in May. I know my decision is the right one because the last two weeks I have been off Decadron and Velcade and I feel great. I do not have the side effects like fatigue, soreness, headaches and much more. I want to be healthy and live my "new normal life".
Stanford gave me my calendar for the months of April, May and June. During the month of April I will be doing pre tests such as bone marrow biopsy, blood work, lung and heart function. On May 6th I will begin the Neupogen shots that will stimulate my stem cells to produce more stem cells. I will have these shots twice daily for 5 days. On May 11th I will be admitted to Stanford for 1-5 days for stem cell collection. Doctors need about 3-5 million stem cells collected. These stem cells will be frozen and stored waiting to be put back into me on May 29th. I will be able to go home until May 26th when I will be admitted to Stanford again for the actual stem cell transplant. On May 26th and May 27th I will be given high dose Melphalan (chemo). This is the bad kind of chemo that has many side effects including mouth sores, fatigue, nausea, hair loss everywhere and other things I don't want to mention. Stem cell transplants are very risky especially for a heart transplant patient. Well reality is that I would not have made it through a stem cell transplant with my old heart. I would not have lived long enough to complete 6-9 months of chemo to fight my disease. So the choice was made to receive a heart transplant first and then do the stem cell transplant. Dr. Kevin just finished his stem cell transplant and was released yesterday from the hospital. It was not a cake walk. He was very sick. The length of time he experienced the worst of the transplant was about 7-10 days. We both feel its worth the time being really sick then a lifetime on the drugs Decadron and Velcade.
On Friday, May 29th the doctors will begin to put my healthy stem cells back into my body. At this point my white blood cell count will be dropping to zero. So I think about the first week of June, I will begin to feel very sick. Hopefully I won't experienced the side effects Dr. Kevin did or not as bad. Everyone is different. During this time my healthy stem cells will be doubling and tripling. My body will become healthy with the new stem cells. My white blood cell count will slowly begin to climb back to almost normal. I'm not sure how far my white blood cell count will go up because of the new heart and the risk of heart rejection. Doctors have to maintain a fine balancing act with my new shared heart and the stem cell transplant. That's why it is so risky. Stanford has done alot of stem cell transplants but Dr. Kevin is the first and I will be the second to have one with a heart transplant. At the Mayo clinic they have successfully done 20 stem cell transplants on heart transplant patients with Amyloidosis. WOW this is so much to take in!!!
If all goes well my stems cells will engraf and I will begin to feel better. When my white blood cell count reaches a safe level the doctors will release me from the hospital. I will then spend up to 30 days in an apartment close to Stanford. I have to spend at least 4 hours a day at Stanford taking tests and blood draws to check for rejection or infection.
I decided to rent a corporate apartment in Mountain View close to Stanford during this time. They are beautiful. Last time after the heart transplant I stayed at a residence inn. It was nice but very small (studio). Mom and I will need more room this time because I am not allowed to leave the apartment only for doctor appointments at Stanford. Last time I was able to go out of the hotel room for grocery shopping, walks or for a ride doing errands. This time Stanford is very strict and I will not be able to go out of the apartment at all. They said maybe on the last week there I could go for walks around the complex, maybe! So I want a really nice place to live if I'm going to stay for that long. The apartment is two bedrooms, two baths with a living room and full kitchen. I even asked for a washer and dryer so Mom won't have to carry laundry to a laundry room by herself. So I think we will be very comfortable and safe.
It's so hard to comprehend going through all this. I keep thinking I will wake up from a bad dream and this is not happening to me. But then again I do not wish this on anyone. 2009 will be the year to be healthy. Next year 2010 will be my "new normal life"!!! I will live to travel, share special moments with friends and family and enjoy every moment I have left on this earth. I hope you will too!!!
Please pray for me during this time. Pray for the strength and courage I need to get through the next phase of my recovery. Everyone helped me through the heart transplant and I know everyone will be here for me through the stem cell transplant. From the bottom of my new shared heart "Thank you"!
Enjoy this special moment! I am!
love,
Debbie
4 comments:
Words can not express how proud I am of you and how much I love you sissy. If anyone can make it through this you can. I know how hard it will be for you and no one can say I know what you are going through but you (and Kr. Kevin). But we want you here and we are all selfish in that way. Plus I want to see you go back to Sicily and see our family. I love you and what ever you need I am here for you. I love you so much sissy stay strong ok!
Hello Sissy,
You know we all can say to you that your going to be ok, well we all know you are but, You are and have always been a strong person. You have concord so much in your life, looking back you have made it through so much.
This well this is going to be one of those times. Hey you have to be strong for me and for your new neice or nephew. I know this will be one of those steps that all of us are going to be there for you, and you will stand tall through it all.
I love you and I know this will to pass by with the greatest of ease.
Now also I will be there for you when you need me just say the word.
I love you.
Me
Your little Sis
Hi cuz,
Wow...big steps ahead. It sounds like a well thought out plan and a lengthy one. I'm glad you found the apt in Mt View...let me know if you can accept visitors. This place sounds much nicer and more comfortable. I'm praying for you Debbie, I love you and I too, always read your messages and step back in disbelief. You have been a pillar of strength in light of such challenges. I admire and love you so much. My prayers are with you daily.
Love
Maria
Hi Debbie, it sounds like your spirits are high. You have such a good attitude in these tough times. Good luck with everything at Stanford, I know you'll do just fine. I'm doing very well and I've been playing basketball , well just shooting. I'm back to the same level that I was before making shots from all over. My friend says I should be a professional horse player. My spirits are very high and I have a very positive outlook on the rest of my life. I will live the longest anyone one has on my new heart. Your transplant buddie Matt
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