allogeneic transplant - update

[kmiller]

I'm now approx 2 mos post-transplant (day 60ish) and, for the most part, doing quite well. I can't say it was easy dealing with the aftereffects of the conditioning chemotherapy and radiation (one day of total body irradiation), in fact it was miserable at times. My brother was my donor, a perfect match, and it was pretty amazing going through such an intense time with him.

I've been back home for about a month, feel pretty strong, counts good, no major GVHD (some skin problems, maybe some mild intestinal stuff going on). I feel fortunate to have come through it all and to be back home with husband and sons. I have had a few scares, though, which is to be expected, I know.

A few weeks ago I ended up in the ER after I lost touch with reality; my husband and family report that I was rambling on about random topics, could not keep my balance to stand or walk and wouldn't follow directions (like to stay put so I wouldn't fall down. The only things I remember are going to lie down, then waking up in a hospital room. I lost about 10 hours or so.

Well, as soon as I woke up I was mostly back to myself, but they did lots of tests to be safe. The upshot was that I was probably suffering from prograf neurotoxicity. My levels had been higher than normal (we found out later). In retrospect, I had some warning signs: worse hand tremors, large muscle twitches on that day, and weird sleep/wake hallucinations for a few days beforehand. So I'll certainly take those seriously in the future!

I want to thank Ruth C and others for their supportive words, and especially for Ruth's full story of her transplant and its wonderful success! I'll have a bone marrow biopsy sometime around day 100 to see whats going on in there. Of course there's anxiety there, but I'm trying to stay in the moment.

All my best to all of you in the forums. Its a wonderful support. Take care, Kelly

[Ruth Cuadra]

It so great to hear that you are home and feeling good. That prograf toxicity episode sounds much scarier than anything I ever had except for the day I woke up from a nap and thought I had been moved to another room because the room I was in was shaped like a triangle! The mind can play tricks on us, but it's also one of our best weapons for healing if we can keep a positive outlook--which you seem to be doing very, very well.

Keep us posted on your recovery and let us know how that 100-day BMB goes.

Best regards,
Ruth