Submissions to “Patients’ Stories” cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Foundation.

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