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.
When to get checked? Have had so many false alarms for DVT in the past. Last one was 2003, but Factor V and turned 60, leg seems to be getting gnarlier. No symptoms of PE, just swollen leg. Thoughts? Thanks!
When to get checked? Have had so many false alarms for DVT in the past. Last one was 2003, but Factor V and turned 60, leg seems to be getting gnarlier. No symptoms of PE, just swollen leg. Thoughts? Thanks!
I have Factor V Leiden and found out I had it when I was having pain in my right leg for about a week and then got shortness of breath and got worse as days went by. Mentioned to my doctor and she prescribed an inhaler because I do have bronchial asthma. Next day my breathing was getting so bad I went to the ER and they did some X-rays and admitted me due to blood clots in both lungs. Pulmonary Embolism. After tests I was diagnosed with the Factor V Leiden. I have been taking Xarelto blood thinner medication ever since.
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.
Just happened to me. Had shortness of breath and thought I had pneumonia so went to hospital and was told I had PE in multiple arteries and DVT in calf on left side. Kept in hospital 3 days with lovenox injections and sent home with 10 day supply of injections and then to switch to a pill. This just happened and came out if blue. I was walking 5mls a day. I’m 55 and have teens at home. This thread makes me feel better that thus will resolve eventually. Thank you!
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Hi @patientk, allow me to connect you with fellow members @piglit @sherohio @susangourdlady @mlemieux and others who have written about living with factor V leiden and related mutations.
You may also be interested in these discussions
– Newly diagnosed with coagulant factors https://connect.mayoclinic.org/discussion/newly-diagnosed-with-coagulant-factors/
- Factor V Leiden and MTHFR mutations-Blood clots in femoral artery https://connect.mayoclinic.org/discussion/factor-v-leiden-and-mthfr-mutations-blood-clots-in-femoral-artery/
And this blog post
– Clotting disorders: Factor V Leiden and blood clots https://connect.mayoclinic.org/page/hematology/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/
What lifestyle changes or habits help you to live well with Factor I and Factor V Leiden?
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3 ReactionsHi. I just returned from a Doppler having my second clot. I went off Coumadin to have surgery and was off too long
Previously I had a dvt almost 20 years ago I’ve been on Coumadin since.
Leiden Factor V is more common than you think.
I hope you remain healthy
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4 ReactionsWelcome @hollyteachet. I moved your message to this more recent discussion about Factor V Leiden so you can connect with @patientk and others.
Are you back on Coumadin now?
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.
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6 ReactionsHere: Dagnosis of Factor V Leiden, heterogeneous type, post provoked DVT (2019). Maintained on 2.5 Eliquis (x2 a day).
What experience are others dealing with in obtaining healthcare insurance? Last year told I was not eligible for any different plans.
Thanks in advance.
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3 ReactionsWelcome @maribel8. To help you connect with others living with factor V Leiden gene mutation, I moved your post to this discussion:
- Anybody else have Factor V Leiden? https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/
Fellow members like @magnoliamimi @hollyteachet @patientk @moo1 @debbiedefrain @amylydia57 can share their experiences of getting healthcare insurance with factor B Leiden.
Maribel, have you considered working with a social worker to explore all possible insurance options?
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2 ReactionsWhen to get checked? Have had so many false alarms for DVT in the past. Last one was 2003, but Factor V and turned 60, leg seems to be getting gnarlier. No symptoms of PE, just swollen leg. Thoughts? Thanks!
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Hug
1 ReactionI have Factor V Leiden and found out I had it when I was having pain in my right leg for about a week and then got shortness of breath and got worse as days went by. Mentioned to my doctor and she prescribed an inhaler because I do have bronchial asthma. Next day my breathing was getting so bad I went to the ER and they did some X-rays and admitted me due to blood clots in both lungs. Pulmonary Embolism. After tests I was diagnosed with the Factor V Leiden. I have been taking Xarelto blood thinner medication ever since.
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4 ReactionsI want to add to my post that I am 73 years old and my PE episode was about 4 years ago.
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2 ReactionsJust happened to me. Had shortness of breath and thought I had pneumonia so went to hospital and was told I had PE in multiple arteries and DVT in calf on left side. Kept in hospital 3 days with lovenox injections and sent home with 10 day supply of injections and then to switch to a pill. This just happened and came out if blue. I was walking 5mls a day. I’m 55 and have teens at home. This thread makes me feel better that thus will resolve eventually. Thank you!
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Helpful -
Hug
3 Reactions