Remember Me?

[Guest guest]

I finally found everyone at this site! Don't know if you all

remember me? I had a bone marrow transplant this time last year on

September 30th, 2004. I've been doing really very well and just

encountered my first set back at the end of July and it's

continuing. Hope maybe someone can give me some feedback on this.

My oncs started tapering me off Prograf 0n May 18th. The taper

started out slow, I went from taking (2) 1 mg Prograf every day

since I'd gotten home from Transplant in October (so that's 8 months

on this dose) and was first tapered down to (1) 1 mg one day and

then (2) 1 mg the next. Alternating doses. This drop lasted for 13

days then when I went to clinic on May 31st, I was dropped again to

(1) mg everyday.

Looking back at my notes, I slipped on this...because I don't think

that 13 days was enough time for my body to regulate this lower dose.

I stayed on this dose for 49 days and then on July 20th, I was

tapered down again to (1) 1 mg every other day. I started getting

sick around July 23rd, 3 days later and was put on 1000 mg of ceftin

a day.

By August 3rd, my left ear was causing me problems, By August 5th at

midnight my lower abdomen and stomach had swollen so terribly that I

called the bmt clinic at Karmanos and went in that following Monday.

Well they ruled out venous occlusive disease. My liver panel is

great (bilirubin is 0.3, ALT (GPT) is 31, AST (GOT) is 42, creatine

is 0.8, and urea nitrogen (BUN) is 14. They did however find that

I'm spilling protein into my urine on a small scale. What concerns

me most is for the past month, I've been retaining 8-10 pounds of

fluid that only is relieved by aldactone (non potassium depleting

diuretic). I have fluid behind my eardrums which my ct scan now

shows opacity in the mastoid area. My hands are stiff and I cannot

move them in the mornings upon waking, nor can I fully open and

close my hands. Cramping arms, my white count is creeping up it is

now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3

times what they should be? I went for my 1 year post bmt check up

on thursday and got rushed out the door! I could SCREAM!!!

When I saw the chief of blood and stem cell at karmanos he asked me

who changed my doses of Prograf? Oh My God...He's asking me WHO?

Why the hell doesn't he know?...It's terrible to be this far out of

transplant and to feel this insecure. I feel like they are letting

me slip through the cracks here. By the way, although my wbc are

elevated, my rbc's are 4.26 and my hemoglobin is 13.2, platelets

are 331. Are elevated wbc's an indicator that somethings going in

reverse?

HELP!!!...Love Gloria