Today
I had the opportunity to read all of our mutual
stories, each of which express optimism, faith, and
a sincere sense of sharing. With that opening, I
wish to share my story. Forgive me if my story
sounds similar to yours; but perhaps my experiences
may help. dx SAA 02/00 age 57 but going on 45.
I had just returned from a snow mobiling sojourn in
northern Wisc. and was in the process of shoveling
20+ inches of snow from our Illinois residence over
the Presidents' Day weekend 02/00. Felt tired and
fatigued; opted for a few glasses of wine and relax;
slept 16 hours that evening; and was fascinated that
my stool was black the following morning.
I thought
it was the oreo cookies. My mentor, teacher, nurse or
otherwise my wife convinced me to seek medical
attention . dx initially as acute leukemia; revised
to SAA with results of BMB. What's Aplastic Anemia?
I saw a thumbs up gesture from the emergency room
staff at learning the dx was not acute leukemia but
AA. Must be okay-take a pill and go home-I wish.
I started the protocol of ATG/Cyclosporine/prednisone.
Apparently the initial infusion of ATG was to rapid
for my system:chills, tremors, fever, suspected
heart attack. I was one large hive. After recouping
for 4 days, started the regime over a longer period
of time with minimal side effects. Spent three weeks
in the hospital mainly due to the intial reaction of
ATG and watching for serum sickness. Counts began to
rise and hold as of 5/00: wbc 3.0, anc 1.5, hgb 9.0,
plates 30,000. Only 2 infusions since leaving
hospital. Cyclosporine was reduced from 4 to 3 and
zip in August. I was off all meds; feeling great,
even though counts below normal. BMB showed
regeneration-was I in for a future suprise!!!
9/00 went in for my monthly CBC's draw. Doctor
thought it was a lab error, but all my counts were
stable with the exception of platelets. They had
fallen to 9,000. Those nasty guys are my nemesis.
A BMB retest confirmed relapse; and I started back
on cyclosporine and all the other meds that go with
it.
Six months passed with minimal results. Wbc 1.5, anc
.8, hgb (infused every 2 weeks),
plates (infused every 7-10 days). BUMBER!
Underwent a second ATG treatment 4/01. To date, my
counts are gradually increasing to where I,m
transfused aprox. every 4 weeks with paxol(rbc/hgb),
and every two weeks with platelets. Started on
procrit(epogen) 8/11/01. Cyclo levels have varied
due to changes in body levels and renal function.
Currently at 3 twice per day. Wbc and anc holding at
2.5 and 1.5 respectively. Recently underwent hip
surgery (core decompression) due to femoral heads on
both hips being destroyed with prolonged prednisone
use. It reminds me of the famous line from the film
"Animal House"- "Thank you sir, may I
have another". I look forward to being off
cruthes within 2 weeks providing the surgery went
well. Then we do the left hip!
P.S. I may sound upbeat about life and the path that
God has laid before me. But I do have those periods
of depression. There is not a day/hour that goes by
without thinking about my condition and thinking
about the what ifs. Thank you for allowing me to
share my story and perhaps my successes and
achievements. God bless.
Jim
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