Information and Support for MPD's

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Our First Story From a Female who will Remain Nameless

Story:
I was diagnosed with Essential Thrombocythemia back in 2003 at age 46. I'm a female. I had switched to a new internist and he noticed the
high platelet readings that my previous internist had never noticed.
I probably had ET for a good 15 years or more before it was diagnosed, because I had excessive bleeding complications during every surgery I had as an adult. Excessive bleeding during sinus surgeries of 1990 and 1991. Excessive bleeding with wisdom teeth extraction. Excessive bleeding with (the 1) childbirth. Excessive bleeding during hip replacement. Always heavy bleeding during menstrual periods. I would flunk timed clotting tests before surgery and thus learned to wear a tight sweater so that when I rolled up the sleeves it would act as a tourniquet. I asked why several times why I had trouble with bleeding and was told that it was because I have reddish hair and redheads bleed more. Hmmmm...

Anyway, I finally was diagnosed. At first they thought it was
leukemia and that scared the heck out of me. I was recently divorced
with a young boy to raise. They did 2 weeks of testing which included
fancy bloodwork, xraying, sonogramming, scoping every organ in my
body. I even had the colonoscopy. They have to make sure there were
no tumors anywhere causing the funny readings. This was polished off with a bone marrow biopsy which confirmed the Essential
Thrombocythemia only and no other MPD. What a relief. I still spent
a month that winter coming home from work and crawling under the
covers. I was in shock. I never smoked or did anything high risk and
was completely astonished that I had a blood cancer. I did reassure
myself that I was lucky because at age 46 there was no trace of tumor
or leukemia and a lot of worse things happen to people than what
happened to me.

I then had to go for bloodwork every 6 weeks to make sure it didn't
convert to a worse MPD. Every other time I was required to have this
done in the hematologist/oncologist's office so it could be tested in
his lab. I was also put on agrylin and baby aspirin. My boss and
likely other people at work were flipping. As a government employee I
had to turn in doctor slips and the "oncologist" title was spotted,
resulting in uncomfortable questions. I offered to get a disability
thingie in my file allowing me official permission to take my sick
time (I had tons of it) for my treatment, thus alleviating concerns
that I was taking more hours in sick time than the average. My boss
didn't want that. My boss even told me that I would die of a series
of strokes and clots within 11 years. Nice. Clearly my employer was
not dealing well with my health problem. I was a mainframe systems
manager, database manager, and supervisor in a large government
organization. I could see the writing on the wall and was laid off
eventually during an across the board layoff. (I think they were
being careful not to single me out.) The week before this I had my
first performance review in 7 years and was written up for excessive
use of sick time. I thought that was particularly stinky since they
knew I was going to the hematologist/oncologist and they had said NOT to put the disability thingie in my file to get official permission to
take the sick time off. (I didn't really need official permission
since the sick time was taken from my previously accrued sick time and my time off request forms were always signed.) A lot of other stinky things occurred in the workplace, that I won't go into (too long and boring). I mention this so that people realize that workplace issues are a huge concern for anyone with a chronic or major illness. It maybe even is best to try and hide it if possible, depending on your
work environment.

I had been having migraine problems for years, since the late 1980's
and they were growing worse. I had a lengthy medical record of this
for nearly 15 years before I was diagnosed with the MPD. My migraines likely are caused by the Essential Thrombocythemia. ET patients frequently have headaches and in me any type of headache turns into a migraine.

After I was laid off I filed a workers compensation claim and had
extensive reconstructive surgery on my hands caused by so much
keyboard use over 30 years. Some of the joints were worn out. My
thumbs were dislocated. I lost 50% use of one hand and 70% lost use
of the other. Plus I'd been ignoring carpal tunnel problems for
several years so had that fixed too. I had been born with hip
dysplasia and had a couple hip surgeries including the hip replacement
in 2001. Based on all this I filed for and got Social Security
Disability (SSDI). It took 2.5 years before my case was settled.
Note, most people with Essential Thrombocythemia are turned down when applying for SSDI; it is not enough to win. However, if you have
other health problems in combination with the Essential
Thrombocythemia, then you might have a case. Ask a disability lawyer. If you do have a case, let the lawyer handle everything. You're
likely to screw it up and accidentally give evidence against yourself,
especially if you're the workaholic type who doesn't really want to be
on disability (like me). The hardest part for me in getting the
disability was learning to keep my big, fat mouth shut.

Right now I still take the agrylin and baby aspirin. My
hematologist/oncologist has urged me to switch to hydroxyurea because the agrylin is hard to take -- causes pounding heart and head. However, I'm scared of the hydroxyurea because some studies show it linked to leukemia with longterm use. I figure I'll switch to it when I'm 70 and put up with the agrylin until then. My platelets are
between 400K - 525K on medication, which still is high, normal being
200K - 400K. If I took more agrylin (or other medication) I'd be at a
higher risk of anemia or other things. In addition to headache
problems I also have fatique, like a lot of MPD patients. I try to
adhere to a regular exercise routine and that helps. I have been on
loads of medications for the migraines but nothing seems to work so
now I just medicate as needed. My neurologist wants me to try more
medicines but I need a break right now.

I am in the Harvard MPD study as well as a hip replacement study. (I
don't get paid for this, I just send in my blood, information, and
x-rays).

I don't know why I got Essential Thrombocythemia. My theory is that
all the hip x-rays I had over decades caused it, but who knows...

Hope this helps other Essential Thrombocythemia patients.