I was 30 years old and my dad had just retired after working since he was a
teenager. Dad had supported his family after his father had a heart attack and died at the age of 50, leaving a wife and 3 children - my dad and two sisters. He had planned on retiring in Florida so he and my mom went down to pick out a
place to live. On the way back he had a massive heart attack, half way home
in Petersburg Va. I will never forget the call from my mother. My sister and
I never drove so fast in all our lives - we just hoped we would make it to see
him one last time. Well he made it after that heart attack but it damaged
70% of his heart and the Doctor told us it was just a matter of time....
Dad continued to have heart attack after heart attack until he passed away 3
weeks after moving to Florida with my mom. The doctors told us he had too
many platelets and that was the cause of his heart attacks. At the time we
didn’t know that what he really had was Essential Thrombocythemia. He
was 66 when he died and the only other problem he had was a small stroke in
his inner ear when he was 56. They didn’t take platelet counts routinely so
they missed the ET.
Well about a month after my dad died my sister and I began having weird symptoms. She had an episode where she was driving and had a severe head ache and drove herself to the hospital. There they admitted her with a platelet count of nearly 1 million.
I had a blood test at the hospital because I was going on a diet. My
platelets came back high (by machine 650,000 but they were very clotted so the
real count came back about a million when they were counted by hand). I went on the diet anyway only to have a small stroke a few weeks later, followed by
many TIA's and severe dizziness.
When we started to compare notes it seemed very strange that both of us
seemed to have the same thing our dad just died of.... After that we started
to look for answers.... We were told anything from we had cml to being typed
for BMT luckily we have 4 other siblings. We did find a match but then found
out we didn’t need it.
We saw many specialists who all were very confused because there weren’t a lot of families with ET (at least reported!) We were sent to NIH where we were Guinea pigs for a week. They told us that we would
either die of a heart attack or stroke, go into AML (acute myelogenous leukemia) or if that didn’t happen
we would get MF (myelofibrosis). We asked about the prognosis and the doctor said tops 10 years....
Needless to say we were not happy campers! I was 30 with 5 small children
and my sister was 23 with 1 little boy. So I found a better Doctor..........
Well it's been 10 years.... (ha,ha,ha,) My platelets are now under control
(around 300,000) I have been on hydrea (Hydroxyurea) for 10 yrs. and I've just switched to
interferon because the hydrea was giving me ulcers on my legs for the last
6 years and we just found out the hydrea was the cause. My sister is still on hydrea
with no problems and still works full time. The last 6 years weren’t problem
free however. Because of the ulcers on my legs I have been in bed a lot, in
the hospital on IV a lot, but now that I am off the hydrea I'm hoping that this
problem will clear up....and I will walk well again... that would be
wonderful!
So it goes to show you "If there's a will there's a way" We feel very lucky that we know what's wrong and are able to treat it... Unfortunately my dad didn’t get this chance.........