This is my ongoing blog to document the haematopoietic stem cell transplant for the treatment of my illness, Chronic Inflammatory Demyellineating Polyneuropathy (CIDP). I was looked after by Dr Richard K Burt at Northwestern Memorial Hospital under an FDA approved clinical trial in June 2013.
Saturday, 3 August 2013
I decided to re-assess my baseline today, in order to measure any improvement in my condition.
I currently suffer from:
Weakness in arms and legs
Little sensation in feet or finger tips
Clawing of my hands
Foot drop in my left leg
These are the symptoms that I hope will improve over the next 12 to 24 months.
What is amazing, and an improvement worthy of note, is the change to my sleep.
For the last 8 years, I have suffered from sleep apnoea which required the use of a CPAP machine (JPhas been telling me for years that I shouldn't need it due to my physical build). But if I didn't use it, I would stop breathing at night and so it became part of my bedtime routine.
While I was in hospital, Vineetha noticed that I no longer snored (I've snored our entire married life). So I tried an experiment, 'Sleeping without CPAP' for the last 3 nights.
It's not conclusive, but I could be CPAP free, as I am sleeping well and wake up refreshed. Is this another benefit of the SCT? I don't know, but I'll take it!
Anyhow, we've moved out of downtown Chicago and are now near to the airport for two nights.
The girls will be with us tomorrow night, and we're
so glad to have them back.
And on Sunday we will be on our way home ....
Seen by 32
BTROh, I forgot to add Loss of Hearing ...
3 August at 15:02
3 August at 15:07
BTRThe loss of hearing is quite useful at times, especially when I've forgotten to do something
3 August at 15:15
BAHGreat news about the CPAP. Just remember, little by little things will get better. I bet you can't wait to see your daughters. Have a safe trip home. Your family is always in my prayers. -Bryan
3 August at 15:43
WMHope we still going to get these daily updates Ben when you get home.... Will miss it otherwise!!! X