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......
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.
Don't be disheartened if you are expecting GrandChildren yet; it makes me wonder whether hemophilia may be combined with factor V Leiden and solve a problem, as opposites sometimes attract. You would desire to communicate with a professional on such a matter, though.
I am new on here. I had Covid-19 in August of 2022, I developed swollen ankles in my left foot and ankle in September. They did a Doppler and found a blood clot behind my left knee. In October my right foot and ankle swelled but no Doppler was ordered. The hematologist ordered blood tests and I have Leiden 5 and another blood mutation. I am on Eliquis. I was 73 and never had a clot before. I was still working full time and had to cut my hours to 25 because of the pain in my feet. I was sitting all day and my feet were painful so cutting my hours helped. No dr has suggested anything except to continue on Eliquis. I’m beginning to wonder if I should see a specialist. I had the first two shots of covid “vaccine” but none after that as I fainted the week after the second shot. That was in 2021.
I'm currently on eloquis for factor V) but recently started DMSO (dymethylsulfoxide) for arthritis. It's a Vascodialater so it enhances blood thinners. Anyone have experience with vascodialators and thinners. I think I'll go back to warfarin and test INR. Is that the only way to know clotability?
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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.
Don't be disheartened if you are expecting GrandChildren yet; it makes me wonder whether hemophilia may be combined with factor V Leiden and solve a problem, as opposites sometimes attract. You would desire to communicate with a professional on such a matter, though.
I am new on here. I had Covid-19 in August of 2022, I developed swollen ankles in my left foot and ankle in September. They did a Doppler and found a blood clot behind my left knee. In October my right foot and ankle swelled but no Doppler was ordered. The hematologist ordered blood tests and I have Leiden 5 and another blood mutation. I am on Eliquis. I was 73 and never had a clot before. I was still working full time and had to cut my hours to 25 because of the pain in my feet. I was sitting all day and my feet were painful so cutting my hours helped. No dr has suggested anything except to continue on Eliquis. I’m beginning to wonder if I should see a specialist. I had the first two shots of covid “vaccine” but none after that as I fainted the week after the second shot. That was in 2021.
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1 ReactionI'm currently on eloquis for factor V) but recently started DMSO (dymethylsulfoxide) for arthritis. It's a Vascodialater so it enhances blood thinners. Anyone have experience with vascodialators and thinners. I think I'll go back to warfarin and test INR. Is that the only way to know clotability?