Information and Support for MPD's
Our Personal Journey With a Myeloproliferative Disease
We're John and Mary. Welcome to this site.
John has had Polycythemia Vera for just over eleven years. It was the intense itching that led him to a doctor to discover he had this MPD. A year and a half before this, he had cancer of the throat, and went through six weeks of radiation, after having the cancer removed from his tonsil. We've learned that others have developed an MPD disease after having radiation. There is no real proof that this was caused from radiation. He started out with phlebotomies, but they left him too weak, so he went on Hydroxyurea. For about ten years he did sort of okay, but his resistance was always low; therefore, he had pneumonia a couple times. In 2006 his spleen became larger, and he lost a lot of weight. January 2007, his spleen was removed, and he hasn't been the same since. His PV was progressing, and after surgery, he developed Essential Thrombocythemia. Since January, John has been in the hospital four times for a Plateletpheresis. Now, he is no longer taking Hydroxyurea or Agrylin. He takes aspirin, and Peg-Intron Interferon. He's sick a lot on the Interferon, and his life has definitely changed. Since the spleen removal, he filed for disability, and received it. The Interferon injection is every ten days now, instead of weekly. This is new, so we're trying it this way for awhile. His platelets are holding, mostly within the normal range, but usually on the higher end of normal. The count seems to fluctuate between 300,000 and 450,000. Still, so much better than a year ago when nothing remained stable from blood test to blood test.
I'm Mary and I'm a writer and published author. Writing has become my solace in the past year. I work in a middle school, and have done this type of work for most of my career. John and I have been married for three and a half years. We have a combined family of five children and three grandchildren. We can't forget our 90 pound Chocolate Lab! We have a loving family who is very involved in John's illness, and they have helped in more ways than we can count. We are very lucky to have a family like this.
