Reply To: Stem Cell Transplant

(Hi Lori – I still check in every few months to see how everyone is doing! )

Lisa, I didn’t meet the rigid criteria established by FDA for the CIDP stem cell tranpslant. But Dr Burt agreed and believed the root of my problems was CIDP, so he accepted me into the program “off study”. He will still use the results I’ve experienced, but it will be a different part of final research paper. I am so grateful he did this … and he’s done it for others as well. The first time I went for evaluation, I was sent home and was told what he wanted me to try. My neuro followed the recommendations and then I went back a second time and was accepted. I guess I was so ready to kick CIDP out of my body, it was almost easy to go through the program. I admit, in hindsight, some of it was trying. But I was so ready to feel better that I had an attitude of gratitude and hope and it kept me smiling all the way through. I was elated to be in the program. It’s been 9 months and I have not had another treatment of any kind. I was on weekly IVIG. And I was on 5 RXs at breakfast, 2 RXs at lunch, 4 RXs at dinner and 5 RXs at bedtime plus extra pain meds for the really difficult days. And despite all this, I was in pain 24/7. I couldn’t walk more than about 10-20 feet without aid. Now I take 1 RX (one you take for a year post sct) and walk all over the place. This past Friday, I went dancing for the first time in almost 3 years! And I even remembered how to dance and danced pretty solid for about 2 hours. By the time I got home, my feet were in screaming pain, but it was worth it! By the next day, the pain was gone. I always was very high energy, but had extreme fatigue prior to sct. Now I am working long days, being very physically active on weekends, and still do things several evenings a week (dinner w/friends, Bible study on Thurs). I don’t have all my old energy back, but I have a lot of energy. I try not to compare myself to where I was before I got sick, as many years have passed and I’m older and things wouldn’t be the same anyway. I also have a lot of nerve damage and not all of it will heal. Instead, I compare myself to where I was when I went to Chicago for the sct. And the difference is HUGE! And while I may never have full nerve healing, I am no longer under attack. I cannot begin to imagine where I would be this year if I had not done it last … I believe I would be living in assisted living (and that’s not living to me – not at this age).

There are several from this forum that went through the sct program and we now have a facebook page “CIDP and Stem Cell Transplant”. The purpose of the page is to give factual information and share indiviudal stories of those that have gone through this. The page is not to debate the issue, but to provide factual information. There are good links you can explore if you are wanting to connect to those that already went through this. There is also one for MS patients (Dr Burt’s used this process on 23 autoimmune diseases) called “HSCT and MS” and then one called “Stem Cell Warriors” that has people from all over the world. The idea of using one’s own stem cells to rescue the immune system is catching on. So those are some resources to explore.

Send me a pm if you want to talk to me personally. I hope you find the path that works for you.

Linda