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.
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.
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.
I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).
In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.
The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.
Hope this helps; let me know if you have any other questions!
So, when my Dad and then my Mom were on warfarin, both for heart conditions, my Mom planted some kale plants; you are suggesting that one should not eat too many leafy, green vegetables? I wonder why my Mother went for kale, is it stronger in vitamin K than spinach; knowing Mother, she would want to get all of her vitamins? The major avenue to stay away from is grapefruit, which would probably be good for me, as well as the leafy, green vegetables.
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......
@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?
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......
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?
I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).
In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.
The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.
Hope this helps; let me know if you have any other questions!
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......
Sunshine26, did you only recently find out that you have Factor V Leiden, a blood clotting disorder? What lifestyle strategies do you use to help prevent clots?
Yes, in 2017...Memorial Day I went to the hospital ER feeling sick but not sick enough to go to the hospital, I thought. But my late husband thought otherwise. I had been experiencing shortness of breath. But attributed this to an upcoming birthday! After several tests at the hospital, I was told I would be hospitalized. I had dvt and PE's. I looked at the dr. and said..."Am I going to die?" He said "No...but if you had not gotten here in a timely manner, you could have experience a heart attack, stroke....or even death. For 3 days, I had both arms inserted with IV's and one of the medications was Heparin which dissolves clots. Because I had not been in an accident, gone on a long flight where I could not move around, had surgery (but I had cataract surgery but they said during cataract surgery one is not sedated very long), a hematologist was called in. She diagnosed me with Factor V Leiden. Sent me home with Xarelto which broke me out in a rash and then changed to Eliqus. I have been fine since but don't like being on a blood thinner....which she said I will be on indefinitely.
Hi, I have Factor V Leiden as well and am on Eliquis for life. Blood clot portal vein of liver (no liver damage thankfully.)…
I too dislike (to put it mildly) the lifelong need for Eliquis and am frightened because of the chance of severe or deadly bleeding if injured. Next CT in April to see if clot has cleared. I picture it being absorbed safely by my body when I think of it. We are in this together and we will make it! I have faith that it’s just a matter of time before the next amazing blood thinner that won’t pose a severe risk of bleeding is on the market! Science rocks!
We’ve got this!
I’m shooting for 15,000 steps a day and minimum of 10,000.
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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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Helpful -
Hug
1 ReactionDon'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'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.
So, when my Dad and then my Mom were on warfarin, both for heart conditions, my Mom planted some kale plants; you are suggesting that one should not eat too many leafy, green vegetables? I wonder why my Mother went for kale, is it stronger in vitamin K than spinach; knowing Mother, she would want to get all of her vitamins? The major avenue to stay away from is grapefruit, which would probably be good for me, as well as the leafy, green vegetables.
@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?
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Helpful -
Hug
2 ReactionsWelcome, @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?
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Helpful -
Hug
2 ReactionsHi, 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......
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Like -
Helpful -
Hug
6 ReactionsWelcome, @sunshine26. I moved your post looking for others with Factor V Leiden to this existing discussion:
- Anybody else have Factor V Leiden? https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/
I did this so you can read previous posts and connect easily with members like @ducklynn @reginarenaye @piglit @sherohio @susangourdlady @hollyteachet @patientk and more.
Sunshine26, did you only recently find out that you have Factor V Leiden, a blood clotting disorder? What lifestyle strategies do you use to help prevent clots?
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1 ReactionAnyone here that’s FactorV Leiden Homozygous
New member
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2 ReactionsHi, I have Factor V Leiden as well and am on Eliquis for life. Blood clot portal vein of liver (no liver damage thankfully.)…
I too dislike (to put it mildly) the lifelong need for Eliquis and am frightened because of the chance of severe or deadly bleeding if injured. Next CT in April to see if clot has cleared. I picture it being absorbed safely by my body when I think of it. We are in this together and we will make it! I have faith that it’s just a matter of time before the next amazing blood thinner that won’t pose a severe risk of bleeding is on the market! Science rocks!
We’ve got this!
I’m shooting for 15,000 steps a day and minimum of 10,000.
-
Like -
Helpful -
Hug
3 Reactions