Myelofibrosis

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Joanne41
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Joined: 08/11/2008
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Hi there.
I'm a 41 year old mother of 2. One 20 year old and a nearly 3 year old daughter, i live in Adelaide. I was diagnosed with Essential Thrombocythemia about 10 years ago. I didn't have any real issues with it, only slightly higher then normal platelet count and back in 2005 after the birth of my daughter, i got a pulmonary embolisim, but i have recovered fully from that with no issues. A BMB confirmed the condition 10 years ago. About 2 weeks ago, after a blood test due to a womens issue, my blood test came back stating i had weired heart shaped blood cells suggesting myelofibrosis. I've always known with myloprliferative disorders that they can progress into each other. Well after a BMB 2 weeks ago it shows there is significant firosis (scaring) of my marrow. No blast cell, thank God! My hemoglobin isn't looking to bad, not sure about my other blood cells. My spleen is up a bit, but it hasn't changed for ages. Doctor Kuss, said at this stage it's just a monitoring thing with blood tests every couple of months to monitor the progress. I feel ok, a little puffier then normal, but that could be just nerves. I did speak to my doctor about a BMT or maybe a stem cell transplant coz i'm young and don't and not sick. She has refered me to the Royal Adelaide Hospital to talk with the transplant team there, to get informed.
I really am quite nervous about all this as i know this can be a very nasty thing to have and it could still progress into something even worse.
Is there anyone else here with Myelofibrosis? If yes, how are you feeling? and how fast has it progressed, if it has?
Thanks so much.
Joanne