Reply To: Stem Cell Transplant
It’s been 11 months since my stem cell transplant and the improvement is nothing short of a miracle. I am working full time with plenty of energy left to enjoy my life. No meds and no treatments! Reduced pain – but very manageable. I am dancing 1-2 times/week, going out with friends, in a small weekly Bible study group, gardening and living my life full again.
I am exercising twice/day Mondays through Fridays and take the weekends off … I still have challenges (balance and numbness) but those are improving and I know the healing can continue for several years, so it just doesn’t matter. If I don’t improve anymore, it was so worth doing the sct. I got back last night from my nephew’s wedding in the Sequoia Mountains and did just fine traversing the rough terrain and ups and downs of being in the mountains. I didn’t need my cane for balance – I had to take it slow, but I did great – Praise to God and thanks to Dr. Burt and team!!!!
Recently I’ve been noticing something going on with my lower legs/ankles and found it puzzling. It took me awhile to figure out exactly what I was feeling and it dawned on me! I was FEELING again! What an odd sensation and it does come with some pain and twinges, but I’m FEELING again! This gives me hope that I might actually regain sensation in my feet in the future. Another little improvement is that I can walk barefoot again! I know that is a little thing, but it really is a BIG thing in my healing. It’s been over 10 years since I’ve been able to walk without shoes … and it took me a few weeks to even notice that I was doing it … LoL! What a hoot!
I encourage everyone with an autoimmune disease that is not under control to try for the Northwestern Adult Stem Cell Transplant clinical trial. I know it looks daunting and scary – but my life was daunting and scary and I wasn’t ready to give into the idea this was it for the rest of my days. I could do it if necessary, but until I tried all I felt God leading me to try, I wasn’t ready to accept CIDP as my future. For those that tried for the sct and did not qualify, I am so sorry and pray there is a solution for your improvement. For those that have not tried and are scared to try, I would like to encourage you to try for it – the chemo/process was less frightening to me than living the rest of my life with CIDP.
I am grateful to Alice, Sophie and Jim for allowing me to follow their journey up close and personal – it made the entire process less frightening!
Good luck to you, Pat, as you pursue your health.