FORT BELVOIR, Virginia –
January is the start of a new year, which often includes making resolutions. Time to start eating healthier, exercising more, spending less and whatever else we tell ourselves we’re going to do and then ultimately forget about by February.
Another thing also associated with January is National Blood Donor Month. The Red Cross is facing a blood shortage, with the lowest number of people giving blood and platelets in 20 years. It’s literally a life-or-death situation.
Instead of making resolutions we won’t stick to anyway, why don’t we resolve to help save a life?
Blood and platelet donations saved my life – several times.
My story begins almost 20 years ago. After months of bad sinus infections that would not go away, my ear, nose and throat doctor said I needed sinus surgery to fix the problem once and for all. I got my pre-operation blood work done, and my surgery was scheduled for the day before Thanksgiving.
I worked for the New Jersey Meadowlands Commission at the time, and in early November I attended the annual League of Municipalities conference in Atlantic City, New Jersey. On the convention center floor with my surgery a few weeks away, I got an urgent phone call from my ENT’s office to see my doctor immediately about my blood work results. I was two hours away from home, I didn’t have my car, and I was scared out of my mind. I called my doctor, who agreed to see me the following morning, and thankfully a co-worker volunteered to drive me home.
My doctor said my platelets, which are the part of the blood that helps form clots and stop bleeding, were low. He referred me to a hematologist.
What I didn’t know is many hematologists are also oncologists. Posters about fighting and coping with cancer covered the walls of the waiting room as I waited for my first appointment.
I thought I was going to die.
My hematologist did a bone marrow biopsy right in the office to rule out leukemia. I was diagnosed with immune thrombocytopenia. Part autoimmune disease and part blood disorder, ITP is a condition in which the spleen attacks platelets for no reason. The doctor quickly put me on a strong dose of prednisone and I was scheduled for weekly appointments to monitor my platelet count.
The good news was the disease seemed somewhat manageable. The bad news was there was a lot of trial and error with my treatments. This condition is idiopathic, which means it occurs spontaneously or with no cause. Without a cause, it’s hard to find a treatment that works.
Being on prednisone is a roller coaster. It suppresses the immune system, so my blood counts would skyrocket when my doses were high. It’s not a long-term solution or cure, so doctors try to taper the doses as soon as possible.
Prednisone also has many awful side effects like excessive hunger, bloating, weight gain, moodiness and lethargy. On really high doses, I couldn’t sleep. In the middle of the night, I’d make strange lists of everything I had to do. I was always exhausted and agitated. I’m still amazed I made it through with any friends and without an eating disorder.
During that first tapering, I found myself in trouble. I woke up one morning covered in tiny purple dots. A quick Web MD search revealed this was serious, so I rushed to my hematologist for answers. My blood count showed I had nearly zero platelets. I was sent to the hospital and quickly hooked up to IV steroids. I also waited for my first platelet transfusion. It took several hours for those platelets to arrive from Pennsylvania. While I waited, I was under observation for any kind of spontaneous internal bleeding.
I was on this ride for months. My hematologist would taper the dose of prednisone, but I’d crash to zero platelets and end up back in the hospital for another platelet transfusion.
Finally, my hematologist recommended trying the drug rituximab. This medication is used for diseases including non-Hodgkin’s lymphoma, certain leukemias and rheumatoid arthritis. Using it for ITP was off-label, but I was up for anything to get my life back to some kind of normal. The weekly infusions took hours and came with an insane amount of antihistamines since the drug caused allergic reactions in many patients.
My numbers eventually leveled out, but every year or so, I found myself back on prednisone and getting the infusions and platelet transfusions if my numbers were low enough. Thankfully, my platelet counts have been stable for a while, but any bruise that shows up still makes me very nervous if I can’t remember how I got it.
Please consider donating blood or platelets if you can. You never know who you may be helping – it could be someone right here in this building.
Unlike those flimsy resolutions made on New Year’s Day, your generosity and the gratitude of the person receiving the donation will not be forgotten.