Today is my ONE YEAR stem cell birthday!!!
What a year it’s been!
A year ago today I was at Northwestern Room 1676 receiving my new stem cells back.
What a year it’s been!
I’d have to look back at my past year of blogs to even begin to list all of the changes. I’ve been able to discontinue most of my medication. I’m hoping I’ll soon be able to taper off of my last two symptom medications- baclofen, for spasticity, and antivert, for vertigo. I can already tell that both symptoms are improving but I’m not ready to go off the meds entirely. I may never be able to. Despite being in permanent remission, which is really the goal of this, my lesions are still on my brain and spine.
I also still have some crackling in my ears….almost a year ago I had a respiratory infection. I had some fluid in my ears and although it’s supposed to be gone….it’s been a crazy slow recovery. I started taking allegra again and it’s helping. But it’s still there. And it’s annoying. But it’s a small price to pay…that, and the menopause, the hypothyroid, all of it. I’d do it all over again.
The most significant improvement? I’m back to work….and all that goes with that. I’m driving again. I’m walking well. My bladder is fine. As I told one of my employees today “I don’t have the disabled Barbie accessories anymore!” No more walker, no more shower chair, no cane, no incontinence products….most pills are gone. Amazing.
I’m still tired. I’m working from home on Wednesdays. I was hoping that I would only have to do that in May but it’s going to continue through this month and maybe beyond. I started working part-time in April. I’m very very lucky to work for an owner who was willing to work with my recovery.
Today I was surprised with a card from one of my senior residents (a retired nurse) and cards and flowers from my management team.
I’m so grateful that I was able to return to my field of work…..I’m an Executive Director of an Assisted Living community in a nearby Chicago suburb.
Members of our summer transplant group are getting together next week for a dinner while they are in town for their annual check-ups. I’m looking forward to seeing other HSCT vets from our group! My stemmie sister Daniela will be there too!
Last month I had dinner with Nadine when she was in town for her 4 year HSCT checkup!
If you haven’t seen her video…you must. It’s incredibly motivating. She was in a nursing home before HSCT and she is now walking and living her life.
Next I continue to improve and hope the rollercoaster allows me to continue recover peacefully.
Thank you everyone for your support the past year. It’s meant the world.
Ellie
Please share this information with anyone suffering from autoimmune diseases including Multiple Sclerosis, Scleroderma, Devic’s, Stiff Person Syndrome….and probably more that I’m not remembering right now. HSCT is only available in clinical trials in the US. However clinics in other countries may be able to help for a significant cost.
Here are the links for Dr. Burt’s clinical trials:
Multiple Sclerosis link:
Scleroderma trial link:
Stiff Person’s Syndrome trial link:
https://www.clinicaltrials.gov/ct2/show/NCT02282514?term=stem+cell&state1=NA%3AUS%3AIL&rank=1
Devic’s Trial Link:
HSCT for Multiple Sclerosis 