October 30, 2009 at 8:54 am

ok, i feel i need to do a reality check here. but first, let me say thanks again so much for all of your good wishes and support. as always, i appreciate it.

so, not that we have held anything back… but, it is almost beginning to seem that this process, this treatment has been completely painless. well, that is mostly true– but– i did have a a not so good night, the night before last… it was the night after my stem cells were re-infused. they warned me that sometimes the preservatives used in my stem cells cause a reaction in folks. well, it sure did in me. i awoke through the night with uncomfortable nausea and a mild fever. for sure, i didn’t feel well… they gave me medicine for nausea right away and worked to control my other symptoms like fever, headache and general body aches throughout the night and half of yesterday. not fun.

the doctors and nurses tell me it is all normal and par for the course… this gave me piece of mind. anyway, by mid day, my fever was gone and i began to emerge as myself again. last evening and night were uneventful.

this is not a “fun” time in my life, obviously. but it is a necessary time. my opinion so far about the experience of a stem cell transplant is: it ain’t as bad as you may think. and as a side note, allow me to remind that the mortality rate is below, well below 1%. need i tell you what our infant and maternal mortality rates are? done in the right medical facility, stem cell transplants have undoubtedly become very safe. stacey, tell your doctor to either go back to medical school or better research about what a non-myeloablative stem cell transplant entails– his ignorance annoys me as he should know better before he speaks under the cloak of a medical degree. this ignorance is apparent in many neuros, including my prior one, the one i fired. pardon me, i don’t mean to come across as aggressive in this regard, but i have heard this inaccuracy so much now that it’s really beginning to irk me… non-myeloablative stem cell transplants for auto-immune disease is done differently than those for cancer… and a doctor, especially a neurologist, should know this before he speaks.

so despite my mostly good days and my not so good days, i continue to improve cidp-wise… yes, i can move my toes, stand up on my toes and walk with amazing zeal… today i am officially neutropenic– so yes ken, all precautions are in place– gowns, gloves and masks.

more to come… 😎


October 16, 2007 at 12:44 am

Hello Miami Girl,
I can relate to what you are saying. I too am in a wheelchair and pretty well homebound. The only way I’m able to go out is to pay my home care agency because family doesn’t help me. I don’t know what I’d do if anything happened to my computer, it opens up a life for me. If it would help to talk to someone, just pick up the phone and call 1-631-584-0101. I am not a good phone person, but if you leave me your number, I do call back.

I thought a group hug might help.