| My
story, well I'll give you the short version. I was dx with SAA in the
fall of 89. I was 17 years old. One day I went from school to the ER
with heart palpitations. I was always tired and always wanted to sleep.
I had a lot of bruises as well. Believe it or not the ER doctors never
did a CBC so my counts being low was not caught until I went to a f/u
visit to my PCP. They just did it as routine and I went back to work and
school. They got results later that day and I was admitted to the
Hospital. When I look back I remember how extremely tired I was the
summer before school. I was on iron supplements that summer because
I was anemic on my doctor's visit before summer vacation. I could go on
and on, it's a long story( including being scared to death of a
transfusion ..they came in the middle of the night to hook me up...I
about fainted).
Anyway, I was treated at the NIH with ATG /cyclo/pred in
2/91....it worked right away for me. I would relapsed again whenever I caught
the flu ...cyclosporine by itself would usually bring my counts up to low
normal. I was married in October of 94 and we decided to try for a
baby. My counts were pretty stable. I found out I was pregnant in
95 and my counts started a downhill slide. My platelets dropped as low
as 3, but I wasn't given platelets because they needed them for when I
would deliver.
My Hgb dropped to around 7.5 before I was transfused. I
still worked full time as a nurse /being transfused every few weeks
until my daughter arrived 8 weeks early in 6/96.Then I found out I had
SVT (long story there too, in other words, my heart likes to beat very
fast sometimes) After I delivered I was put on cyclosporine but it
didn't seem to help. So, in 2/97 I was given ATG /cyclo/pred again. I
responded slowly this time. They told me then and there that they had no
knowledge of this ATG working a third time.
Well, I got quite a surprise
in 97 I was pregnant again. We definitely were not expecting this. The
doctors all told me to abort him.......but I would not (long story
.letters from my doctors, encouraging me abort him). At this time my
counts were stable and I decided to cont. with the pregnancy. They
wanted me to start cyclo right away. I made a bargain with them and
started cyclo at the end of my 3rd month. ( long story there as
well..not much info. on AA and pregnancy) Amazingly, my counts stayed in
the low normal range with him. I never had to be transfused. Although, I
started having contractions around 20 weeks, they thought it was due to
the cyclosporine. He was perfectly healthy and was born at 37 weeks
6/98. I even went off cyclo...after his birth so I could feed him.
I
basically was fine until around August of 2000. I needed to have surgery
and during a routine CBC they found out my platelets were dropping,
every week I would have another test and my platelets would still
drop..until finally my HGB and WBC began dropping as well. They thought
it was my AA again and did a BMB. Turns out that I have now progressed
to MDS RARS I think its called RMCD or something like that now because
all 3 of my cell lines are affected. My WBC stays around 2.4, ANC 800,
Platelets 20-30, HGB has been as low as 4.0 but I usually get
transfused at 7.5 or 8.0. I also have a deletion on chromosome 13. I
have no matching relatives for a BMT and I'm afraid I won't do the
unrelated match even if they found one. They 30% success rate scares me
silly. I might live longer without a BMT than if I had one. Oh, by the
way I'm adopted and we did test my sister, she wasn't a match.
Not
everyone is aware that I have this disease. They don't understand and
it's hard to make them understand without going into a long story.
People like to hang on the word anemia and don't understand how it is a
life threatening disease. They say things like,"take some
iron" to which I reply, "I have iron overload, iron is the
last thing I need." Then they say, "you don't look sick"
therefore I'm not sick! To which I reply," thank you, I do
feel good today, I had 3 units of blood yesterday". OOPS, I
mentioned the word "BLOOD transfusion". They don't understand
I can feel well one day and do most normal things and then feel so bad
another day that I can't move off the sofa or play with my children
because I'm so tired. The fatigue is so unexplainable unless you have
had this disease. I get fustrated just trying to do the normal things.
In February of 2001 I tried cyclosporine at 300mgs BID, I couldn't
tolerate it this time at all. I weigh 108, so they decreased the dose
and added MMF at 1000mgs BID. I tried this until May. NIH decided it
wasn't working and I decided to stop. I refused the Androgen/male
hormone. I tried B6 200mgs BID. I was told about Epogen but my
erythropoetin level is very high and my Dr. said it was unlikely to
work. I decided to get a port -a-cath in the fall for desferal since I'm
in iron overload/ and so I don't have to be stuck 6 times to find a
vein for transfusions.. Also, the theory is; if my iron comes down maybe
my counts will go up. I have had Iron overload for over 10 years. Then
I will try ATG again. I had the horse serum first 2 times and now they
will use the rabbit serum. I'm a little anxious since I had to be
desensitized to the horse serum. I'm afraid of a really bad/fatal
reaction this time. In the meantime, I have been off all meds this
summer for a little breather and to have time to enjoy my favorite time
of the year.
I hear all these stories and I see a lot of people are upbeat and
optimistic. I would love to be that way. I've learned to take one day at
a time and try to live it to the fullest. I look at my children every
night and I thank God for them. They are truly miracles. I hope in
the future that I can survive this disease to be there for my children
and maybe even have another one. I've had this disease 11 years now. On
one hand I say hey, I made it 11 years! On the other hand, Why
have I had to live with this fear for 11 years?
Day to Day
I think about this
I think about that
I wonder about the what if's
I wonder about the what not's
I forget on a good day
I remember the next day.
Bridget from Maryland
29 yrs
DX AA in 89
TX ATG/cyclo/pred in 90
Partial relapse/ TX with cyclo
Total Relapse in 95/96
TX ATG/cyclo/pred in 97
AA to MDS RARS in 00/01
2 successful pregnancies, wife to James, mother to Sierra Rose age
5 and Noah James age 3
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