Hi Lori – 10 days seems like a long time. Unlike ivIG, plasmapheresis didn’t have any effect other than lowering my blood pressure a bit. I did it 5 times in as many days. No side effects at all. Just felt good. So maybe you could talk to your doctor and see if it could be done more quickly. A bad time of year to be hanging out in the hospital tho. Good luck and the best to you. Keep us posted. Watch out for Dr. Acula:D
Hello Dean, Time has gone by fast, reading your post has reminded me of the doctors telling me to get my power of attorney together. That was scarey,along with the fact I still have a 12 year old at home.Anyway ,glad you are steady progress, maybe not as fast ,as you would like, but still better than six months ago.You and I got our lives changed around the same time.I hope this next year you gain that 25% ,or at least close to it.
It does seem like a lot of us were very active before CIDP struck. I have had 4 1/2 years to reflect on what has happened to me, so I am a bit further on in the game. I raised a disabled son, who can walk minimally with Canadian crutches & AFOs, but primarily uses a wheelchair now for most activities (age 25.) I spent a lot of time with disabled people at various camps & sporting events, so no, I don’t think this is caused by your being judgmental in the past. It is just something that happened & now we have to deal with it.
I had to go out on disability right away, as I was hit hard & fast. I missed my teaching job immensely, but knew I was too sick to ever go back. I was also a downhill skiier, living just 15 miles from the best ski lodge in the Midwest. My husband & I were also very active in cross-country skiing & belonged to an adult skating club. I had also been on a women’s tennis league for almost 20 years. All that is gone for me now, at too young of an age. I walk now with AFOs & a cane, but have looked for other things to do for recreation.
I can still snowmobile (note I live in northern Minnesota,) but this year have chosen to go to a 2-up, so my husband & I can take turns driving when I get fatigued. I also plan on taking up ice-fishing again. This summer we went up to our summer cabin a lot, & I love swimming more than I ever did before. We also did a lot of crusing in the boat & fishing. My point is, that even though there are a lot of things I can no longer do, there are other things I can substitute. IVIG never worked for me, nor did steroids or PP, so I had to go the drastic route with cytoxan to wipe out my entire immune system. But life goes on…