Dvt and pulmonary embolism

yayabeaks

I had a massive dvt and pe in august 2014, just curious to see if anyone else has experienced anything similar and how you are getting along.

thielke2015

dvt/or are acute medical problems with a number of underlying causes that need quick intervention for treatment before deterioration.
what kind of experiences are you hoping for?

livingleanlivingclean

My husband had a 30cm clot in his leg last year, given the all clear after about 4 months. He's now on aspirin....and they found out he has a gene mutation. He's going fine - no different, hasn't stopped him doing anything

Machka9

I moved to Australia in 2009, and on the flight over, I felt my left calf cramp but I figured I'd walk it off. 6 weeks later, I was still figuring I'd walk it off until one night I was sitting in the bath and noticed that my left leg was twice the size of the right. I had also been struggling with breathing.

The next day I walked out to meet my husband on his way home from work as I always did ... and couldn't make it. I couldn't get that left leg to work and I couldn't breathe.

The next day he suddenly burst through the door in the middle of the day and whisked me off to the Dr ... then into an ultrasound ... then into the hospital for 2 weeks with DVT. My left leg was full of clots. Turns out I have a genetic predisposition toward DVT.

I was on Warfarin for a year, then went to see a blood specialist who took me off the Warfarin (thank goodness!) and now I take 5 mg of folic acid every day. My blood specialist told me that aspirin wouldn't really help me at all.

While I was on Warfarin, everything I did was like moving through sludge ... so tired, so little energy. I'm a long distance cyclist and I went from finishing all my events comfortably to having a 50/50 DNF rate.

After I was taken off Warfarin, things started to improve. I'm back to cycling long distances.

Because I have a genetic predisposition toward blood clots, it does affect my whole life. I'm perimenopausal, but cannot take hormones. And every time I fly, I need Clexane injections.

livingleanlivingclean

Machka9 wrote: »

I moved to Australia in 2009, and on the flight over, I felt my left calf cramp but I figured I'd walk it off. 6 weeks later, I was still figuring I'd walk it off until one night I was sitting in the bath and noticed that my left leg was twice the size of the right. I had also been struggling with breathing.

The next day I walked out to meet my husband on his way home from work as I always did ... and couldn't make it. I couldn't get that left leg to work and I couldn't breathe.

The next day he suddenly burst through the door in the middle of the day and whisked me off to the Dr ... then into an ultrasound ... then into the hospital for 2 weeks with DVT. My left leg was full of clots. Turns out I have a genetic predisposition toward DVT.

I was on Warfarin for a year, then went to see a blood specialist who took me off the Warfarin (thank goodness!) and now I take 5 mg of folic acid every day. My blood specialist told me that aspirin wouldn't really help me at all.

While I was on Warfarin, everything I did was like moving through sludge ... so tired, so little energy. I'm a long distance cyclist and I went from finishing all my events comfortably to having a 50/50 DNF rate.

After I was taken off Warfarin, things started to improve. I'm back to cycling long distances.

Because I have a genetic predisposition toward blood clots, it does affect my whole life. I'm perimenopausal, but cannot take hormones. And every time I fly, I need Clexane injections.

Thats so different to my husband's experience! He wasn't on warfarin, but another medication (starting with R, won't even try to spell it!). When we fly long distances, he has to take that before we fly and 24hours after. His training/energy wasn't affected at all - he made the effort to be more active, surfing more regularly along with normal training...

His haematologist told him to take aspirin, for 2 years - apparently there is no studied benefit after this length of time. His risk of another clot now he's had his first is supposedly no different to anyone else who has had a clot, despite his gene mutation...

deetails26

I had a massive DVT in Nov 2013, caused by a rare condition called May Thurner. It's my motivation to get to a healthy weight. I now have a stent in my vein to keep it open and losing weight will decrease the pressure on it and hopefully avoid it happening again but thankfully, so far, I am completely healed by it, although I do have some residual pain in my leg where the DVT was but not as often as some people do. Mine was caught really fast! It is the reason that with a desk job, I make sure to get up and walk around every 30 mins to an hr and have to purpose to take more stops during car rides and get up and walk around when flying. It has changed my life for sure, but it was a wakeup call for me so I wont take that for granted.

Machka9

livingleanlivingclean wrote: »

Machka9 wrote: »

I moved to Australia in 2009, and on the flight over, I felt my left calf cramp but I figured I'd walk it off. 6 weeks later, I was still figuring I'd walk it off until one night I was sitting in the bath and noticed that my left leg was twice the size of the right. I had also been struggling with breathing.

The next day I walked out to meet my husband on his way home from work as I always did ... and couldn't make it. I couldn't get that left leg to work and I couldn't breathe.

The next day he suddenly burst through the door in the middle of the day and whisked me off to the Dr ... then into an ultrasound ... then into the hospital for 2 weeks with DVT. My left leg was full of clots. Turns out I have a genetic predisposition toward DVT.

I was on Warfarin for a year, then went to see a blood specialist who took me off the Warfarin (thank goodness!) and now I take 5 mg of folic acid every day. My blood specialist told me that aspirin wouldn't really help me at all.

While I was on Warfarin, everything I did was like moving through sludge ... so tired, so little energy. I'm a long distance cyclist and I went from finishing all my events comfortably to having a 50/50 DNF rate.

After I was taken off Warfarin, things started to improve. I'm back to cycling long distances.

Because I have a genetic predisposition toward blood clots, it does affect my whole life. I'm perimenopausal, but cannot take hormones. And every time I fly, I need Clexane injections.

Thats so different to my husband's experience! He wasn't on warfarin, but another medication (starting with R, won't even try to spell it!). When we fly long distances, he has to take that before we fly and 24hours after. His training/energy wasn't affected at all - he made the effort to be more active, surfing more regularly along with normal training...

His haematologist told him to take aspirin, for 2 years - apparently there is no studied benefit after this length of time. His risk of another clot now he's had his first is supposedly no different to anyone else who has had a clot, despite his gene mutation...

I had to be on Warfarin for the year until my INR level settled and until the clots finally disappeared. They were so plentiful and thick they had completely blocked all my main veins into my leg. My leg had compensated by building new capillaries but they weren't up to the task so my leg swelled to twice its size. And it took months before the clots finally disappeared. I ended up in hospital in August ... went for another doppler ultrasound in December, and about half of them were still there.

And for me, Warfarin was miserable stuff. I was on quite a high dose and it just knocked me out.

My genetic mutation is MTHFR ... which is, apparently, also why I've never been able to carry a child to term.

Sitting for any length of time will likely cause clots (so I'm up and walking at least once an hour) and hormones of any sort will cause clots ... and in fact, my gynaecologic oncologist is even reluctant to do a hysterectomy on me because a surgery like that will apparently also likely cause clots. (See my most recent comments on the last page of this thread: http://community.myfitnesspal.com/en/discussion/10359984/women-menstrual-cycle-weight-and-fitness-matters#latest for more on why he might be entertaining that idea)

As far as flying goes, I need a Clexane injection 12 hours before the flight, right before the flight, in the middle of the flight if it is a long flight, right after the flight, and 12 hours after the flight ... and sometimes an additional 12 hours after the flight.

I'm going into surgery next Thursday (see thread I linked to above) and will need a Clexane injection before that surgery.


Anyway, once they got me onto Warfarin tablets and Heparin injections in the hospital, they started trying to get me out walking. At first, I could manage the hallway of the hospital, and it was a small hospital. Eventually they chased me out to walk around the block each day. My grandmother, who had recently had a hip replacement, could have walked circles around me. It was so frustrating and depressing.

About 6 weeks later, I finally got back on the bicycle again ... and managed 6 km, but struggled with that.

It took a long time to get back where I was ... and I do have a minor amount of permanent damage.

yayabeaks

thielke2015 wrote: »

dvt/or are acute medical problems with a number of underlying causes that need quick intervention for treatment before deterioration.
what kind of experiences are you hoping for?

I'm ok now, it took a long time though. It's just good to link up with others who have been through similar I still have scarring on my lung which can give me a wheeze and I still get a lot of pain in my leg in the winter. That was all

yayabeaks

Machka9 wrote: »

I moved to Australia in 2009, and on the flight over, I felt my left calf cramp but I figured I'd walk it off. 6 weeks later, I was still figuring I'd walk it off until one night I was sitting in the bath and noticed that my left leg was twice the size of the right. I had also been struggling with breathing.

The next day I walked out to meet my husband on his way home from work as I always did ... and couldn't make it. I couldn't get that left leg to work and I couldn't breathe.

The next day he suddenly burst through the door in the middle of the day and whisked me off to the Dr ... then into an ultrasound ... then into the hospital for 2 weeks with DVT. My left leg was full of clots. Turns out I have a genetic predisposition toward DVT.

I was on Warfarin for a year, then went to see a blood specialist who took me off the Warfarin (thank goodness!) and now I take 5 mg of folic acid every day. My blood specialist told me that aspirin wouldn't really help me at all.

While I was on Warfarin, everything I did was like moving through sludge ... so tired, so little energy. I'm a long distance cyclist and I went from finishing all my events comfortably to having a 50/50 DNF rate.

After I was taken off Warfarin, things started to improve. I'm back to cycling long distances.

Because I have a genetic predisposition toward blood clots, it does affect my whole life. I'm perimenopausal, but cannot take hormones. And every time I fly, I need Clexane injections.

Warfarin is horrible isn't it. I had my dvt and pe at 38 weeks pregnant and it was the most horrendous experience of my life. They sat my mum and partner down and told them to prepare for the worst, it took a good long while to get anywhere near fit again and that's after you've gone through the mental setbacks and being terrified that when you go to sleep you won't wake up.

pinuplove

@Machka9 Thank you for sharing. This topic is near and dear to me as I lost my mother to a PE at a relatively young age. I saw your post in the women's issues thread and almost asked why they hadn't considered hysterectomy but didn't want to be too nosy about someone else's medical conditions.

I haven't been tested for clotting disorders yet since I personally haven't had an event but with a strong family history (mom's PE, maternal aunt had a dvt, and brother had a massive stroke in his late 30s) I'm wondering if I should push for it.

OP, I'm glad you had a good outcome! PE is scary, scary stuff.

yayabeaks

pinuplove wrote: »

@Machka9 Thank you for sharing. This topic is near and dear to me as I lost my mother to a PE at a relatively young age. I saw your post in the women's issues thread and almost asked why they hadn't considered hysterectomy but didn't want to be too nosy about someone else's medical conditions.

I haven't been tested for clotting disorders yet since I personally haven't had an event but with a strong family history (mom's PE, maternal aunt had a dvt, and brother had a massive stroke in his late 30s) I'm wondering if I should push for it.

OP, I'm glad you had a good outcome! PE is scary, scary stuff.

I would push for it if I was you!

ParanormaLauren

I talked about my experience with PE and anxiety on xoJane. The pub is now defunct, but you can still read it here.

http://www.xojane.com/healthy/pulmonary-embolism-anxiety-disorder

TeaBea

pinuplove wrote: »

@Machka9 Thank you for sharing. This topic is near and dear to me as I lost my mother to a PE at a relatively young age. I saw your post in the women's issues thread and almost asked why they hadn't considered hysterectomy but didn't want to be too nosy about someone else's medical conditions.

I haven't been tested for clotting disorders yet since I personally haven't had an event but with a strong family history (mom's PE, maternal aunt had a dvt, and brother had a massive stroke in his late 30s) I'm wondering if I should push for it.

OP, I'm glad you had a good outcome! PE is scary, scary stuff.

I lost my brother to a PE 4 years ago......no family history.

OP - very glad you had a good outcome indeed!

Mallory0710

I had bilateral pulmonary embolisms in April 2016 and a month later lung surgery. I was diagnosed with Prothrombin Gene mutation (Factor II) Exercise is encouraged to people who experience these medical problems. It also helps with the post depression and anxiety that comes with the PE's..