DVT and you haven't flown anywhere
Discussion
Hey, I’m about 18 months ahead of you. Only found out I have DVT when I got a pulmonary embolism, no symptoms until then. My clots became loose and travelled to my lungs.
Without wanting to scare you, it is a serious condition and could be life threatening.. have they got you on anticoagulants yet?.. most people are fine and fully recover.
I’ve developed more clots despite being on the anticoagulants, on further investigation I’ve got a genetic disposition to clots which wasn’t checked when I had the pulmonary embolism. Essentially I’ve been on the wrong dose of medication for 18 months and a ticking time bomb.
Make sure they screen you for any genetic issues especially if you can’t pin down why you developed the DVT.
Without wanting to scare you, it is a serious condition and could be life threatening.. have they got you on anticoagulants yet?.. most people are fine and fully recover.
I’ve developed more clots despite being on the anticoagulants, on further investigation I’ve got a genetic disposition to clots which wasn’t checked when I had the pulmonary embolism. Essentially I’ve been on the wrong dose of medication for 18 months and a ticking time bomb.
Make sure they screen you for any genetic issues especially if you can’t pin down why you developed the DVT.
nekrum said:
I’ve developed more clots despite being on the anticoagulants, on further investigation I’ve got a genetic disposition to clots which wasn’t checked when I had the pulmonary embolism. Essentially I’ve been on the wrong dose of medication for 18 months and a ticking time bomb.
Sorry to hear about this. DVTs are nasty things. As you may have been told, a clot, even once cleared, leaves a form of scarring on the vein wall. The scarring makes the vein wall less smooth, and so more susceptible to an accumulation of platelets, which makes it more likely to generate another clot.
Double trouble, if you have a genetic predisposition already.
I had the same!
I suffered a very painful DVT in Sept 2021 in my left leg, there is now a full clot pretty much the length of my thigh. Between myself and a lot of specialists, we've never been able to pin down the exact cause, so probably a combination of lifestyle/weight/diet with perhaps a hint of Phizer vaccine.
Currently it hurts a bit - there is pain caused by swelling and it has induced almost permanent plantar fasciitis - it swells about 10% during the day, and goes down at night when I'm lying down. The swelling / pain is a little bit less when I wear compression socks all day, but that's not always practical - the socks also exacerbate some skin problems which have been caused by the DVT - my blood is returning via non-ideal paths and causing various irritations.
As a result, I am on the waiting list for an operation - look up ACCESS PTS for a description.
I hope you don't need that, and good luck with your recovery. But if you are not making satisfactory progress, try and get referred to Prof Stephen Black at St Thomas' Hospital in London. I'm lucky it's not far from home, but it does seem that he's the only guy in the UK with a really good knowledge.
In the meantime, I'm on Apixaban (blood thinner) tablets, squeezy socks, fruit & veg, as much low-impact exercise as I can manage and quite a lot of hobbling around.
Good luck! I wouldn't wish the initial pain on anyone.....
I suffered a very painful DVT in Sept 2021 in my left leg, there is now a full clot pretty much the length of my thigh. Between myself and a lot of specialists, we've never been able to pin down the exact cause, so probably a combination of lifestyle/weight/diet with perhaps a hint of Phizer vaccine.
Currently it hurts a bit - there is pain caused by swelling and it has induced almost permanent plantar fasciitis - it swells about 10% during the day, and goes down at night when I'm lying down. The swelling / pain is a little bit less when I wear compression socks all day, but that's not always practical - the socks also exacerbate some skin problems which have been caused by the DVT - my blood is returning via non-ideal paths and causing various irritations.
As a result, I am on the waiting list for an operation - look up ACCESS PTS for a description.
I hope you don't need that, and good luck with your recovery. But if you are not making satisfactory progress, try and get referred to Prof Stephen Black at St Thomas' Hospital in London. I'm lucky it's not far from home, but it does seem that he's the only guy in the UK with a really good knowledge.
In the meantime, I'm on Apixaban (blood thinner) tablets, squeezy socks, fruit & veg, as much low-impact exercise as I can manage and quite a lot of hobbling around.
Good luck! I wouldn't wish the initial pain on anyone.....
Please take it gentle, as others have mentioned clots can break off and cause a pulmonary embolism. They can break off with a little bit of moderate excersize, bit of weight loss, anything that helps improve blood circulation, and if the clot hits the wrong spot.. well you won't have to worry again.
Unfortunately I have personal experience of this.
Unfortunately I have personal experience of this.
Peanut Gallery said:
Please take it gentle, as others have mentioned clots can break off and cause a pulmonary embolism. They can break off with a little bit of moderate excersize, bit of weight loss, anything that helps improve blood circulation, and if the clot hits the wrong spot.. well you won't have to worry again.
Unfortunately I have personal experience of this.
This!.. keep active but also be cautious.. Unfortunately I have personal experience of this.
Sorry to hear this, not fun are they.
I've had several since an initial one when i was 18 which was "extensive", in my leg extending up my iliac (iirc?) and even blocked my inferior vena cava, which is still blocked but compensated with lots of veins up my chest wall. I'm on blood thinners since another clot in my kidney about 15 years ago. Was originally on warfarin (hated it), then clexane injections for about 10 years, and recently low dose apixaban. Have a rare clotting condition, not the regular factor 5 one. Hadn't flown either, just happened.
I ride my MTB almost daily
I've had several since an initial one when i was 18 which was "extensive", in my leg extending up my iliac (iirc?) and even blocked my inferior vena cava, which is still blocked but compensated with lots of veins up my chest wall. I'm on blood thinners since another clot in my kidney about 15 years ago. Was originally on warfarin (hated it), then clexane injections for about 10 years, and recently low dose apixaban. Have a rare clotting condition, not the regular factor 5 one. Hadn't flown either, just happened.
I ride my MTB almost daily
I've had around 9 DVTs in both legs, both above and below knee. None of which developed after flying, though I probably had a TIA after taking a bus to Heathrow immediately before a flight to Barbados. I now have a diagnosis of antiphospholipid syndrome, aka Hughes Syndrome. Essentially the blood is thicker than it should be and consequently it causes clots. I also have a prescription of Warfarin for life after I developed a DVT whilst taking Apixaban. If there's no obvious reason for clotting, it's worth asking about this health condition as it seems to be rarely mentioned by GPs.
Handy tip for us DVT folks; if you're flying anywhere, contact your airline in advance and tell them you have a medical history of DVTs and they're ever so lovely. Virgin have given me extra legroom seats free of charge, boarding in group 1 etc. I've been trying to find the silver lining to my legs being absolutely ravaged by clots
On my last flight the cabin crew were gorgeous, aware of my condition and suggested I join them in the galley to exercise my legs where I got given champagne and posh snacks! Total winner.
Handy tip for us DVT folks; if you're flying anywhere, contact your airline in advance and tell them you have a medical history of DVTs and they're ever so lovely. Virgin have given me extra legroom seats free of charge, boarding in group 1 etc. I've been trying to find the silver lining to my legs being absolutely ravaged by clots
On my last flight the cabin crew were gorgeous, aware of my condition and suggested I join them in the galley to exercise my legs where I got given champagne and posh snacks! Total winner.
I had an unexplained DVT (left lower leg) in 2024. My symptoms were atypical. Just a nagging ache in my calf. No swelling, redness or warmth to touch. My local urgent care suggested it was tendonitis. I'm quite active - walking around 4 miles per day, cycling, mild resistance training etc.
I had a weird experience that ended-up being a bi-lateral pulmonary embolism. I squatted to pick something up and felt a strange sensation in my chest (which turned out to be the clot passing through my heart) and then a feeling that I had inhaled something unpleasant. I blew it off and carried on with my day. I awoke the following morning with a tightness in my chest and some discomfort when breathing in. Wife (retired nurse) bundled me into the car and hauled ass to the ER.
I spent 3 days in ITU - had a whole bunch of tests - most concern was the size of the PE's and potential pressure on the left side of my heart. I was put on apixaban (Eliquis) for 12 months and a baby aspirin regimen thereafter. I have a hematologist visit every 6 months to monitor clotting factor and have had no recurrence.
Nobody has given me any explanation as to what caused it - but aside from sleeping I never remain immobile for longer than an hour, just to minimize the risk of another one.
I had a weird experience that ended-up being a bi-lateral pulmonary embolism. I squatted to pick something up and felt a strange sensation in my chest (which turned out to be the clot passing through my heart) and then a feeling that I had inhaled something unpleasant. I blew it off and carried on with my day. I awoke the following morning with a tightness in my chest and some discomfort when breathing in. Wife (retired nurse) bundled me into the car and hauled ass to the ER.
I spent 3 days in ITU - had a whole bunch of tests - most concern was the size of the PE's and potential pressure on the left side of my heart. I was put on apixaban (Eliquis) for 12 months and a baby aspirin regimen thereafter. I have a hematologist visit every 6 months to monitor clotting factor and have had no recurrence.
Nobody has given me any explanation as to what caused it - but aside from sleeping I never remain immobile for longer than an hour, just to minimize the risk of another one.
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