Mood:
chillin'Now Playing: Copy of Email from Wes
Topic: Update
It's afternoon, Wednesday, June 27, & I'm relunctantly sending this update, for fear some of you are tired of hearing about my recovery & health issues? However, enough of you
have e-mailed, sent postal notes or called to inquire how my June 20 appointments went with lab. work, vitals, bone-marrow biopsy, chest X-ray, consultations with a cardiologist
& my regular physician, so I'll try keep it simple. Since my return after the June 6 appointments, with excellent results, I began experiencing some physical changes, but decided it
was the effects of 16 pills per day, or something temporary? On June 20, my doctor exam & accompanying questions about eating habits, etc., showed a rash on my torso area,
plus I'd had on & off diarrhea for over a week. He concluded that my "condition" was probably Chronic Graft vs. Host Disease, since I had about half of the dozen or so symptoms.
Graft-versus-host disease (GVHD) can occur at anytime during the 100-day post stem-cell transplant, but when it's later it's usually the chronic type, with twice as many symptoms.
I just reached my 100-days so I thought I'd survived the worst of post bone-marrow transplantation side-effects? But this complication in which the transplanted stem cells cause my
new immune system to attack my own body cells & tissue, seems to be the culprit of my discomfort these past 2 weeks? If necessary, I'll begin taking Prednisone, alternating with
the Cyclosporine (Gengraf) I've been on for the past 100 days. Both the doctor & coordinating nurse are optimistic I'll "work through" this, even if it is some kind of infection? Help!
Ironically, ALL the results of my June 20 blood draw, biopsy & regular tests came back with NORMAL or EXCELLENT "readings", including my heart, chest X-ray, blood pressure
& weight. My doctor asked me to report back to clinic on July 25, & my cardiologist wants me back in 6 months for an Echocardiogram/ consultation, so I'm not-out-of-the woods as
soon as I'd expected? This last week I've experienced some joint pain, abdominal discomfort, skin rash, shortness of breath with activity, dry mouth & continuous diarrhea, which
means I don't stray far from home. I eat small amounts throughout the day, drink plenty of fluids, sleep 9+ hours each night, with daytime naps, & a lack of energy which means daily
tasks are acomplished, but not much more. I'm not very good company, as of late, rarely use the phone, to save my voice, & have avoided dining "out" somewhat. I am not gaining
any weight, but maintaining my 175# & my temperature has ranged from 97.8 to 99.4 the last three days. My coordinating nurse & I have e-mailed back & forth, plus telephone
calls inbetween, & her "lectures" always include reminders to eat normally, take rests when necessary, & any infection should clear up, in time. I apologize for "producing" another
"book", but decided more than family & neighbors might be interested in why I haven't returned to normal....yet? As always, THANK YOU for your continued concern, & wishes for
renewed health. I've been told, more than once, it will take a year after my March 16 transplant before strength, appetite, & normality return. Happy July 4th "week" from me, Wes