I wanted to let you all know that I went to Chicago in June to be evaluated for HCST for my CIDP.
Sadly, I did not get accepted as the criteria is very strict,,,,in the meantime, I had a major relapse 95% paralyzed in my legs. Had to have stair lifts put in my home as well as a stall shower with a seat.
Im a young 40yd old with a 7 yr old son. he suffers so much because of my disease....its just not fair!
I go back in 9 days to be re-evaluated!! ive had a high level of protein in my spinal fluid since I was there as well as my physical relapse.
To be honest, Im scared, If I am accepted I don't want to be away from my family for so long BUT if it means I come home on the road to recovery.....I'll take it!!
I am on SSDI so funds are very tight & I had to start a gofundme in order to help get me back to Chicago. Im almost at my goal...I must say that I am forever grateful to have found a great support of friends who know what im going through.
Why did they reject you the first time? It sounds like you have a very active disease and are not being helped by other types of treatment. I was just wondering why because I was thinking about trying to get in too. Good luck next time.
I wish you luck and peace whatever the outcome. HCST seems like a very tough program to get into and a difficult treatment to endure. Stay positive.
We are blessed with our support groups and those closest to us suffer along side us. Your son loves you deeply and he’s having to grow up faster than expected. For that, I am truly sorry.
For me, I have set rules and boundaries. My supporters must live their lives. If I ask for help, and I will, I appreciate it. But don’t take on my burden. It is mine and I own it. It’s important that they understand that life happens. It’s how we cope with it that matters.
I smile as often as I can and sometimes I cry. Sometimes my partner cries with me. But I am determined not to allow this disease to define me. I will learn all I can and relentlessly fight it. But who I am is who I’ve been, plus new experience, knowledge, and spirituality.
I was not accepted the first time because 1. my spinal fluid was normal...did not show inflammation & 2. the EMG they did there was actuallybetter than the last one I had back home.
This time my EMG is much worse & my CSF shows major inflammation.
Hopefully, there will be enough to get me "in"this time. IVIG was working, but then I had a major set back while on it. Prednisone doesn't do a thing for me but make me gain weight :(
Im ready to face this beast head on and be done with it forever!! I must get my life back.
Welcome back to Chicago. I hope you'll get to check out the Chicago River which they dye shamrock green every St. Patrick's Day.
I'm very sorry for the setbacks you have suffered. It's especially hard to be raising a young son at the same time. Your love and strength will be his role model for the rest of his life.
Every time I read something on here there is something new. I had no idea what HCST even was and really don't have a real basic understanding of it. But I'm glad to learn everything I can. I hope you get into this treatment. I am also on SSDI and no the strict budget.
I am looking forward to applying. Can I ask why you were not accepted? I have gotten 3 IVIG treatments and they have helped. I have one good week a month know. The IVIG treatments make me really sick. The IVIG seems to cause my immune system to over react. I wish you the best of luck. I think the stem cell transplant in the end is worth it. If it means remission
