Thursday, June 7, 2007


My platelets were too high, as was my White blood cell count so the decision was made back in January to put me on Hydroxurea. They told me that the benefits outweigh the risks, and, not only would it suppress the production of my platelets and WBC's, it would suppress red blood cell production as well. They didn't really go into any side effects. Although I did know that it was believed that Hydroxurea could potentially lead to forms of leukemia (AML).
Initially I was taking 3 pills a day, two in the morning and one in the evening for a total of 1500 mg. That lasted for about two months and now I'm currently taking 2 pills in the morning for a total of 1000mg. For a while I didn't think that I was experiencing any side effects from the drug but the longer I take it I'm convinced that the constant phlegm draining in my throat and the occasional tightness in my chest and the feeling that my heart is racing may be caused by this drug. The doc gave me Prilosec to combat the potential heart burn I might be experiencing and made me an appointment to see a cardiologist to get a full check up on my "ticker". I'll let you know how that goes.
During a second opinion quest on my treatment and management, a leading specialist suggested that I not take hydroxurea. It was his belief that"we" tend to over treat this condition and that phlebotomy alone will sufficiently reduce the RBCs, Hemoglobin and Hematocrit such that a thrombotic event would not be possible or probable. H e didn't think that it was necessary to treat the high platelet count. In my case the high platelet count led to a condition called Von Willebrand's disease, where, in layman's term, the platelets malfunctioned and would not clot. So even though I had a high platelet count, I had a tendency to bleed. Which manifested itself following my bone marrow biopsy back in January.
I'm still taking the hydroxurea despite the second opinion, and other than the potential heart burn and the phlegm in my throat I really don't notice any side effects to the drug. Most importantly, my blood counts, including WBCs and the platelets, have all been in the normal level for the last three months.

Friday, June 1, 2007

Polycythemia Vera - Seven months since diagnosis.

I'm 38 years old - I was diagnosed with PV last December, 2006, on a routine blood test as part of my annual flight physical. My HCT was at 56 and my Platelets were pushing 1 million. I had no outward symptoms of the disease and I still don't today, 7 months later. A look back through my medical records revealed that I have had this for potentially the last 10 years yet it was not recognized by my physicians. Initially they put me on regular phlebotomies (once a week initially) and 1500mg (3 pills) of hydroxurea a day. Now, seven months later, my blood counts are holding normal with HCT of 42 and platelet count of 188 and WBC of 5.7. I'm down to phlebotomies about once ever two months and 1000mg of hydroxurea a day.

I'm physically active. I ran the Marine Corps Marathon a month before my diagnosis and I excercise several times a week. One of the big problems that I'm dealing with now is regaining my flight status. I am a US Naval Carrier aviator and because of this disease I have temporarily lost my flight status while the Navy determines my ability to operate a high performance aircraft on board a deployed aircraft carrier.

I would like to hear from others out there who have this disease. I'm especially interested in hearing from anyone who have stories about people involved with aviation careers (commercial or military) who have dealt with this problem.