Wednesday, November 4, 2015

... and I've got my brand spankin' new diagnosis

So the bone marrow and other tests done in October weren't a wash after all. (Just because you have access to your own online chart doesn't mean you can understand it.) Hematologist said today that the morphology was consistent with blah blah blah and etc. etc. Bottom line: essential thrombocytosis (aka thrombocythemia) is confirmed. I also learned some new things.

The fact that my platelets have been stable in the 600s for about 12 months and all other blood cells look normal puts me in the "low risk" category, despite the fact that I'm over 60. (Doc said that people my age often go in a medium or high risk category, but everything else being normal works in my favor). So the treatment plan is to continue taking low dose aspirin every day to reduce clot risks, have blood cell counts monitored every three or four months, and see the hematologist every year.

The doctor also drew me a little diagram of related MPNs, noting that both ET and polycythemia vera (aka PCV, too many red blood cells) sometimes morph into myelofibrosis (MF), in which blood production in the bone marrow runs amok and too many immature blood cells, called "blasts" are released into the system. MF can cause more serious symptoms than ET. In some cases, MF can turn into acute myeloid leukemia.

At this point, the hematologist said there was absolutely no reason I could not have mitral valve repair surgery. That might change if the blood disease worsens, but right now things don't look dire, I know what's going on. So this is a good day.

Be well!

2 comments:

  1. My platelets are in the high fives and two surgeons have declined giving me a new hip unless I take Hydrea first. I asked about blood-letting but that'd need to be done every 72 hours after surgery for six weeks! I am willing, actually, rather than take a toxin.

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  2. Could you discuss surgical risks with your hematologist and have her/him talk to the surgeons? Just a thought, but ET is so rare that other docs are sometimes afraid of it or aren't up to speed. My hematologist seemed to think that any clot risk could be controlled with heparin and other standard blood thinners used in surgery. I have never heard of blood letting/phlebotomy on ET patients, only those with PCV. Anybody else looking at surgery who can provide more info?

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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.