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No
Good Deed Goes Unpunished !!!
My HCL story began on August 30, 2006, 25 days before my 35th
birthday and was a complete shock. Until
my diagnosis, I had thought myself to be a perfectly healthy, 35 year old
female. HCL hit me by surprise and I
hope that those who read this account can gleam some help or insight from it;
just as I have from the many stories and personal accounts that I have read,
during the course of my own illness, on this website.
My diagnosis stemmed from a “good
deed.” I went to donate blood at a
company blood drive and was refused. The nurse at the donation drive suggested
that I go see a doctor for a full CBC immediately because my hematocrit levels
were extremely low. Well, less than
a week later, I had a bone marrow biopsy done and was told that I had hairy cell
leukemia. My blood cell counts were
extremely low (1.9 WBC, 3.1 RBC, and 62 platelet or PLT) and treatment of 2Cda
was recommended immediately.
For my treatment, I underwent the
week long continuous infusion of 2Cda through a stint and pump at home.
The first few days went OK; I did not work, stayed at home, slept lots,
and generally did pretty well, however, my appetite was poor and I did not eat
much. By day five (5), however, my
poor body began to suffer. I started
to run a fever, was nauseous (throwing up with chills/sweats), and had
‘pains’ deep within my muscles, and could not stay awake or think
coherently. So, we returned to the doctor to get blood cultures, another CBC,
and antibiotics. Our next stop was
to the hospital to receive two units of blood, as an outpatient. My hemoglobin
level was concerning (which probably explained the muscle pains and extreme
fatigue).
Following the transfusion and the
removal of the stint/pump, I have progressively improved and my numbers have
increased. I am back to work full
time now and only missed about two and a half weeks of work for the whole
ordeal. I did have family come for
Thanksgiving and was able to eat most of what I cooked (fresh vegetables were
back on the menu)! Right now, I am
looking forward to Christmas – and believe that 2007 will bring full remission
for me. My latest numbers are
encouraging; 5.6 WBC, 4.03 RBC, and 129 PLT.
At the time of my diagnosis, I did
not think that I was ‘sick’ at all – a fact which my doctors still find
amazing – considering my blood count levels.
In hindsight, however, I can pick-out many things that should have
alerted me to the fact that something was not quite right.
I was getting sinus infections with increasing frequency; I had tooth
aches; I was bruising more than normal; and I was often short of breath,
particularly when going up the stairs at work.
At the pool and at the gym, I was being passed and out-done by people who
I would normally have run circles around; and, the kicker, I was ALWAYS tired,
despite sleeping an average of 9-10 hours a night (and 12 on most weekends).
At the time, I simply attributed these symptoms to stress (I was working
way too much), poor nutrition, and to just plain getting old!
For me, the most difficult part of
the illness has been the nagging question of “why.” Not necessarily “why
me”– but more so, “why anyone”? What
causes HCL? Who gets it?
Can it be prevented? Obviously,
I did not fit the profile for the illness (men with an average age of 52) and
for that reason alone, I am very curious to find out more about HCL.
I hope that the HCL Research Foundation can help me – and others -
answer that question one day.
One final note – I want to THANK
the HCL Research Foundation, my doctors and nurses, my workplace, and my friends
and my family (especially my husband – and primary care giver). The
support of these people helped me tremendously and I know that I couldn’t be
getting through this without any of them!!
Linda Macey
Scubadoo24@verizon.net
