DVT recovery 6 months in: Thought I’d... - Anticoagulation S...

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DVT recovery 6 months in

CH11 profile image
CH11
15 Replies

Thought I’d share my experience and recovery in case it helps anyone else.

February this year, I was admitted with severe DVT causing my leg to become ischemic, i am 33, fit and healthy, not overweight, non smoker and rarely drink, and no recent long haul flights.

Although the cause of my DVT is unknown but perhaps related to several weeks of working from home being sat on the sofa with a bad back, when I was admitted to hospital they did find a blockage in my IVC which has likely been there for years, it was decided not to stent and review my recovery in a years time before making a decision.

The recovery so far has been a long process and due to my leg becoming ischemic, it took a number of weeks of physio and persistence to learn how to move my leg again and to be able to walk.

I still suffer from nerve damage including burning sensations in both calf’s and numbness around the ankle. I also get mild cramp in both legs and a heaviness feeling after a long day. I obviously suffer from the common anxiety and paranoia of a repeat DVT or get the feeling something is wrong.

I am on Apixaban for the foreseeable future which reduces the risk of a repeat DVT and I have another check up in February 2021 where hopefully I can explore other options. I guess my point here is, even though its been a long and slow journey, full of anxiety and weird sensations, things do get better! I have started trusting my body again and intend to start some physical activity again next week such as jogging and the gym and maybe even return to mixed marital arts (without contact due to COVID and the blood thinners).

Hope the above helps and reassures you that you’re not alone but feel free to share your experience.

All the best :)

C

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CH11
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15 Replies
Gingerapple profile image
Gingerapple

Hi there,

What a nice post. Sounds like you had a really nasty experience. One person wrote and said I need loads of patience. My blood clot was in my lung, where I have a tumour. Two weeks in bed, 3 days home and I am now cleaning, riding bike and doing things, like cooking, washing hair. I try not to think of too much these days, just do it and carrying on.

I hope you are doing really well. It's a shame this Covid-19 has stopped all swimming, that was really a Godsend! I hope you have a great weekend, love Bev🎈🌹🤗💐❤

CH11 profile image
CH11 in reply toGingerapple

Aw I’m pleased to hear you’re also feeling and doing better. I guess these things all take time. It’s nice to know you’re not alone in these situations and these forums really help.

Gingerapple profile image
Gingerapple in reply toCH11

Thank you, you are really nice! Are you feeling better these days? You have to be careful with gyms and the like, swimming pools, very dangerous in these.I do hope you drop me a line on occasion and tell me how you are.

Loads of love and hugs, Bev xxxx🎈🌹🤗💐❤

Brookiebiceps profile image
Brookiebiceps

It has been rough. I have a clot in my ivc and PE's in both lungs. I was a female powerlifter, 40, fit and a mommy of 5. I started to feel sick in July. High heart rate, nausea, adrenaline rushes.. my cat scan of lungs was normal than. These "attacks" happened for weeks, shaky, nausea, loss of appetite, high heart rate.. almost like panic but worse... I went to emergency and was told I'm fine.. I became mildly short of breath and went to hospital.. had another scan and they found the clots, this was 8/28/20.. idk if the clots caused all of those symptoms or if I have a separate condition. I also lost 17 lbs! But I would go days without eating due to nausea and anxiety.. I thank everyone here for sharing.. I also live in the US.

CH11 profile image
CH11 in reply toBrookiebiceps

Sounds like you had a rough time too, I also agree, I’m grateful for all the comments and the community. It’s nice knowing you’re not alone. Did you ever find out the cause of the clots? Are you now back to the gym and are things starting to get back to normal? I’m from the UK

Brookiebiceps profile image
Brookiebiceps in reply toCH11

No. It's only been 3 weeks:( I'm still weak.. how long were u back to "normal"

CH11 profile image
CH11 in reply toBrookiebiceps

For me it took a couple of months as unfortunately my clots stopped the blood circulating around my leg and cause it to become ischemic, meaning I could no longer move or feel my leg. Took about 4 weeks to walk again and I still have some slight nerve damage. I still have a blockage on my IVC but because I’m only 33, they’re not keen on stenting and only until recently had to wear medical stocking 24 hours a day. Over the past month I’ve been going back to the gym, doing yoga and going for 1-2km jogs, I wouldn’t say things feel ‘normal’ but I think that’s down to the restricted blood flow but certainly getting better each day. Are you on life long blood thinners too?

Brookiebiceps profile image
Brookiebiceps in reply toCH11

So they say.. I'm not a huge medicine taker but I guess I have no choice. Which med r u on? Also how do u know u have a blockage in ivc? I have a clot in my ivc and was told I was born with 2 ivc veins!! I'm 40.. I also just started my menstrual cycle :(

CH11 profile image
CH11 in reply toBrookiebiceps

Yeah me too, I’d rather not take medicine but I’m currently on apixaban, which also means the activities I’d normally do, I can no longer do. What have they put you on? How did they treat the clots? The blockage came up on my CT Scan which may or may not have been there since birth. I think their theory is, if I can live with the blockage (as little veins have created a bypass around the blockage) then why stent. They said they’ll review it again in February but who knows now with COVID etc. Did they say how long it would be until you’re able to lift again?

Brookiebiceps profile image
Brookiebiceps in reply toCH11

I'm on xarelto.. they said no heavy lifting.. just walking for the next month. I've been on meds since 8/31.. so not too long. Do u have clots in your ivc? I guess your on meds for life too?

CH11 profile image
CH11 in reply toBrookiebiceps

Not heard of xarelto before, guessing it’s tablets with no dietary guidelines? Yeah clots in the IVC, and blood thinner for life although I’m still optimistic. I am going to see a hematologist and try and find the cause of the clot. Appreciate health care in the US is different but will they investigate the cause of yours? Do you still get the anxiety feelings too?

Brookiebiceps profile image
Brookiebiceps in reply toCH11

Yes I'm anxious! How long have u been on meds? Is it a pill u take? They did some genetic test that are not back yet. My sister had a clot in her leg months ago and was on injections. Did the meds make u weak? I'm just so tired but scared to sleep some times!

CH11 profile image
CH11 in reply toBrookiebiceps

Me too, think the anxiety is normal though, seen a lot of people say the same. I’ve been on the meds since feb 2020, I wouldn’t say I feel weak and tired from the meds though. I remember feeling weak, tired and slight fever symptoms just after leaving the hospital which maybe lasted 3 weeks or so. I think injections/warfarin are quite popular but I’m glad I’m not on it. What makes you scared to sleep?

Brookiebiceps profile image
Brookiebiceps in reply toCH11

I get weird sensations in my chest.. I also think, how do I know the meds are working??? Is your pill elequist? When did u start to feel "normal"

Brookiebiceps profile image
Brookiebiceps

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