my stem cell transplant, epilogue
[FONT=”Microsoft Sans Serif”]hey sharon–
okay, my turn :rolleyes:
i think you and i have a very similar story. ivig didn’t work for me either and like you, prednisone did, but at the ugly cost of prednisone… i too needed another “traditional treatment” under my belt in order to be eligible for the transplant and in my case i tried cyclosporine, also for 4-5 months– it did nothing for me except make me weaker and sick feeling.
[U][I]the basic timeline for my road with cidp:[/I][/U]
[B]dec 2007:[/B] 1st symptoms, numb toes.
[B]feb 2008:[/B] diagnosis: cidp
[B]june 2008:[/B] (so 6 months later) — numbness was now up to my hips and shoulders, had autonomic involvement (difficulty holding my urine and other, difficulty swallowing and breathing) complete foot drop and near paralysis– unable to turn myself over in bed, could not walk at all, etc.. funs stuff..
[B]july 2008:[/B] tried ivig– zero efficacy. then began 60 mg prednisone daily and it did work.
[B]oct 2008:[/B] added cyclosporine and reduced prednisone, began sliding backwards..
[B]sep/oct 2009:[/B] had my stem cell transplant at northwestern and immediately began improving!
so, at this writing, it has been a year and a month since i did my transplant. i knew right away that the disease process had stopped after the treatment and I have steadily improved in all ways since. i made folks grumpy on the forum several months back when i posted that i was cured– i still maintain that i am indeed cured… i have no numbness anymore, most of my reflexes have returned, my pain is gone, i walk like i did prior to cidp and still, i continue to heal from the ravishes of the disease… since the transplant, i have been medicine free!
as far as effects from the treatment itself– well, at this point, all systems seem normal. meaning, my blood counts are all back to normal, my skin is no longer dry (yes i had that too, its from the chemo), i simply feel great, i feel normal, like i did before i got sick.
undoubtedly, i have more healing to do– they say you go on healing for approximately 2 years and i’m counting on it. the part i am most anxiously waiting for is my ankles to regain their spring. i still run like a dork:o i had serious damage in that area (ankles), including axonal damage, so it is taking much longer to repair but i have not at all lost hope. the doctors at northwestern feel i will have a full recovery and so do i– it just takes a really, painfully long time………
i’m returning to work in february. i probably could have gone back to work sooner if i had a less physical job (i’m a cop).
oh, by the way sharon, i also quit smoking since being hospitalized.. i tell people who are trying to quit to have a SCT, it worked for me 😉
i think that’s about it– it isn’t easy to encapsulate in writing such a drawn out period of time. but i do hope it helps to share our stories for those looking for hope where once there was little. i am in touch with about half of the people that have gone through the transplant and everyone is doing great! some of those people had the transplant much before me and they have returned to their lives, medicine free and absent of cidp (chronic irritating depressing poop). i continue to keep my website up and running and field between 1-2 emails per week from people from all over, including other countries, interested in the transplant. i talk to many of them on the phone or over skype– answering their questions and calming their fears. many of them have gone to chicago to be evaluated for SCT and some have even had transplants since mine. my website is [url]www.alicedicroce.com[/url]
p.s. oh yeah, i also lost the taste for some unhealthy cravings after the transplant– it made becoming healthier easier.