Hi everyone. This is personal news I thought I should share with you all. And it’s about as easy to share as it is to be going through this…NOT! In December, just before I was retired, I started a series of blood and genetic testing to determine why (at that time) my platelet count at my routine physical in December was too high.
Presently, I have been diagnosed with 1 of 3 rare blood disorders, Polycysthemia Vera (PV), which is 1 of 3 disorders called Myeloproliferative Neoplasms (MPNs). These MPNs have in recent years been classed as blood cancers. I am getting a bone marrow biopsy soon which will provide more information and confirm a diagnosis.
The bad news: There is no cure for any of the MPNs, only treatment (haven’t started yet) and PV is progressive. And, because it is rarer, affecting mostly people over age 60 (though younger people can get it), and it does have (as an average) a longer-term prognosis with treatments, MPNs probably don’t receive the attention and research dollars that other cancers do.
The good news: With the few treatment options out there right now (if tolerated and effective), the average prognosis is pretty good for someone my age and even better for those who are younger than age 60. But PV does put me at a far, far greater risk for blood clots (strokes, heart, abdominal, lung, or leg blood clots) than the general population would be. Ultimately, I believe this is the eventual cause of death for most people living with MPNs.
Also, the good news is I feel all right at this time. Nothing major has happened. I just had a second opinion and am deciding on who is best to manage my care. There are some nice support groups and research foundations to help those of us with these conditions. With all the genetic research ongoing for other disorders, there may be more helpful treatments or a possible cure down the road.
So, this has been hard on me of course, hard on Oberon and my son. Even with the decent prognosis treatment may provide, living with this uncertainty and the treatments that lie ahead is difficult to say the least.
Though I may have to change some things and adapt to circumstances as they come, I am not going to let this change the essence of who I am. I will remain the (mostly) positive, silly, spiritual, and intuitive person you’ve come to know; a person who loves life with all of its ups and downs and finds every breath I take to be a blessing. And we are going to keep on keeping on with TFT and all the other dreams and plans we had for our retirement.
Because these disorders are rare, I feel an obligation to share my story with others and will have posts about my health journey on our blog. Sharing stories and information so people are more aware of these disorders and the impact they have. If you are interested in following my health journey, there will be links posted when I write about this.
So, let’s continue on our social media journey together: uplifting, supporting, laughing, crying, learning, & sharing with one another. Mr. O and I have been very blessed to meet so many good people out here on Twitter, Facebook, YouTube, and now hopefully on TFT's website. We are grateful for all the wonderful connections we have made thus far. Blessings to all!
For more information regarding MPN's visit the MPN Research Foundation website.
Please Note: Opinions expressed in this article are solely my own and are not to be considered medical advice. Consult with a medical professional if you want the most accurate information.