Yesterday, Jo and I talked to a 52-year guy in Denver who, on the phone, sounds like a non-stop bundle of energy. 14 years ago, he was diagnosed with Stage-4 Leukemia and he was given a 6% chance of survival. He did an autologous bone marrow transplant (his own marrow) and it worked! 3 years later he relapsed and had Stage-4 Leukemia again. He then got an allogeneic transplant (using his brother's marrow) and again it worked! Today he takes a little medication for cholesterol, but nothing that would be considered related to his transplant.
The story gets even better. He says he was told by many people how tough the proceure was going to be. He said he did get some graft vs. host disease and one time his temperature hit 106 degrees, but overall neither time was as difficult as he was led to believe. He said that if he had to do it again, he could do it standing on his head!
Many people think walking around on broken hips for two years would be an extremely tough experience. For me, it probably would have been. For Jo, she made it look like a cake walk. So much of life is a matter of attitude and the circumstances put before us are rarely as grave as we make them out to be. If I had to bet on anybody setting the new all-time bone marrow transplant recovery timeframe record, I would bet on Jo.
We did see Dr. Anderlini today at MD Anderson in Houston and Jo is scheduled for more tests tomorrow. More details to come...
By the way...Dr. Anderlini has not aged a single day in 5 years...neither has Jo.
3 comments:
Awesome, I would bet on Jo setting a record on recovery time as well! So glad you were able to talk to this gentlemen.
Hi Jo and Tim!
I heard your story through a friend of mine. She’s attended the line dance conference in Chicago recently. She mentioned about your situation and I saw the youtube about your MDS and the needed bone marrow transplant. I just wanted to share my story with you and hope it will give you great hope and know that everything will be alright. I was told I had Aplastic Anemia, but then later officially diagnosed with MDS in 2006. Although I knew something was wrong with my marrow many years earlier than 2006. So, prior to my decision to perform bone marrow transplant, I went through years of constant platelet transfusions. I started of with once a few months transfusion to once a week transfusion through out the years. Then at some point I knew I had to do it. In July 2007, I did it. Reason why I kept putting it off was because I was very nervous about the procedure and the stats given wasn’t assuring enough for me. Unknown in life is always scary. I reach out to different support group because I wanted to talk to someone with similar situation and how they felt about the process. Looking at your youtube clip, I know exactly how you are feeling! It’s so strange that we are so similar in many ways. I’m diagnosed with MDS, my brother was my marrow donor with perfect match, and I 35 when I had the transplant. Just wanted you to know that it will all work out for you.
Seeing your personality in youtube, I can already tell you will do just fine! You’re hopeful, energetic, and you have done all the homework you can do. Now, it’s just getting it done and move on. A month in the hospital may seem very slow in the hospital. Bring books, laptop, good movies, and have photos of love ones to bring smiles to your face when you get down. I can’t say the entire procedure is a breeze, but as anything it will pass. Take each day as it come. There are days you will be depress or angry, and you have the right to be, but again, those feelings will pass. I am glad to know that your husband Tim is support. I know whatever you maybe feeling, he feels like a wreck inside. My husband was the same way. But I know it would be 10 harder if he wasn’t there for me. Although he feels helpless because it’s out of his control, just his presence was more than enough for me. He was able to take time off from work for 3 months to go through the transplant and after care for me. After 1 month and coming home from the hospital, you will have you central line attached and you will need either your husband to help start IV fluid/meds or have an in-home nurse help you. It will still be a little overwhelming even after you come back from the hospital. So, take it easy and again, take it one day at a time. With your love of dance, I’m sure you’ll get right back to your normal self in no time! The more energetic you are the sooner you will recover! Oh…did I mentioned the hair loss, that’s probably will be frustrating initially….but for some reason, I made the wig shop my favorite place to visit. I can get ready in less than 2 minutes! Had never been able to do that before with my real hair! LOL….but hair will grow back. It’s no big deal……So, 3 years later I am now 5 months pregnant and we are expecting a girl! Life can’t get any better than this. Prior to the transplant I’ve harvested my eggs (all 18 of them) and had them fertilized. What a blessing it was, in our 1st try to get pregnant to IVF, I was pregnant! Such a blessing. My platelet is steady, greater than 150, which is highest that I can ever remember. It’s a great feeling. Although I have to be truthful with you and thoughts such as will my marrow go the wrong direction again or will I need another transplant again??? And other crazy thoughts...…but then I look at what’s current in my life….my wonderful husband and my new baby girl coming in Feb …. I have a lot to live for and look forward too …. and all those bad thoughts drifts away….
I wish you well and just know that there are lots of support out there.
Feel free to contact me.
Lien Ho
Lienkimho2000@yahoo.com
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