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Anybody else have Factor V Leiden?
Blood Cancers & Disorders | Last Active: Apr 19 12:08pm | Replies (43)Comment receiving replies
Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
Replies to "Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential..."
@dturner20
Welcome to the Mayo Clinic Connect group. I find that this is an excellent place to “ramble,” as we are all fluent in that form of communication. We’ve all been there.
Have you spoken to your daughter about signing a Release of Information so that her physicians can speak to you about her treatment? As a patient, I find it so helpful to have advocacy when I am in the thick of things. I often forget to ask my questions or when asked, forget what I’ve been told. With your nursing background, I’m sure you would be an excellent person to fulfill this role for her. If not in person, phone follow up can be arranged.
Do you think your daughter would be amenable to sign an ROI?
I've been treated for thrombocytosis since 2011, so I shall consider it ET, even though my hematologist/oncologist has not told me so. The only question in all this time that I have asked him is whether diet can help and his response was a light "no." Other people say that diet can help. My doctor has not said that he has found no signs of leukemia nor any other kind of infection to cause elevated platelets, therefore: it is ET? Some say that ET is a form of blood cancer, but in my experience of understanding, they say that one may live just as long or about as long as a normal lifespan with proper treatment; the danger was said to be a blood clot causing a stroke. I suppose you should join the ET group, also? I have yet to ask my doctor if I have blood factor problems, all that he has told me is JAK positive. I had an Uncle that died of leukemia in about 1992 when I was about 32, but he had an excuse: he, along with the rest of a platoon were ordered to march through a ground zero; it would be interesting to review all of the platoon's medical histories. ET is not as bad as other conditions in longevity, although I am just reading up on factor V Leiden. I am a 63 YO male and I was told that I had "sticky blood" after a plasma donation in about 1984, so I probably could have been diagnosed toward ET in 1984.
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Welcome, @dturner20. I can imagine that you're totally freaked out as a mom. Is warfarin being suggested for your daughter? Does she live close to you or are you supporting her from afar?