Tri after multiple PE

2009-07-09 6:16 AM

Veteran

455

Limerick, Ireland

Subject: Tri after multiple PE

Hi there,

a few days ago I was diagnosed with mulitple bilateral PE which was casued by clots travelling from my legs. I'm currently on blood thinning meds (Warfarin) and was told to have a month off and then take it easy, especially with running.

So my questions: Is anybody else out there in the same circmstances? How are you dealing with that? Did your training programme changed much? Any advice?

Apologies if I don't reply quickly, still in hospital and only using mobile internet.

2009-07-09 10:26 AM

in reply to: #2272147

Subject: RE: Tri after multiple PE

Well, I was just releaseed from the hospital last Saturday for multiple bilateral PEs, although we don't know what the cause is yet. No DVT, no genetic factors as of yet, although I foresee lots of tests in my future. On coumadin for at least 6 months. Not released to do anything but walking at the moment until all my symptoms go away.

THe big thing is the bike if they put you on coumadin. If you fall and bleed, it may take a while to stop and you may end up with massive bruising. If you fall and suffer internal bleeding, that could be very, very bad. I am resigned to no biking for 6 months until I hopefully get off the coumadin

This may turn me into an aquathlete

Good luck to you, get out of hospital soon

Edited by ChrisM 2009-07-09 10:32 AM

2009-07-11 6:38 AM

in reply to: #2272920

Veteran

455

Limerick, Ireland

Subject: RE: Tri after multiple PE

ChrisM - 2009-07-09 4:26 PM

Well, I was just releaseed from the hospital last Saturday for multiple bilateral PEs, although we don't know what the cause is yet. No DVT, no genetic factors as of yet, although I foresee lots of tests in my future. On coumadin for at least 6 months. Not released to do anything but walking at the moment until all my symptoms go away.

THe big thing is the bike if they put you on coumadin. If you fall and bleed, it may take a while to stop and you may end up with massive bruising. If you fall and suffer internal bleeding, that could be very, very bad. I am resigned to no biking for 6 months until I hopefully get off the coumadin

This may turn me into an aquathlete

Good luck to you, get out of hospital soon

Hey Chris, my diagnosis wasa exactly the same. Also warfarin seems to be the same thing as coumadin just different name and I'm on it for 6months initially. My doc said I can't do anything for a month after I'm out of hospital (yup still here INR=1.3) and then take it very easy. He also said I shouldn't do much running at all- well at least not until I'm done with the treatment. Strangely enough he was ok with cycling but I think I'm gonna reduce it to spinning classes until I'm all good, especially that autumn in Ireland is usually rainy and windy (not even dreaming about cycling this summer) so quite risky. Still trying to get an answer as to how they're gonna test if I'm "all clear" after the 6months- did your docs say anything about it? Like they had to do CT of my lungs but surely they won't do CT of my whole body once I'm off warfarin- there must be some other way. Also they can't tell me if I'm in a some sort of higher risk group from now on as it was only one episode.

Feeling very VERY down today.

2009-07-11 11:13 PM

in reply to: #2272147

Subject: RE: Tri after multiple PE

Hey... I am actually back in the hospital. INR is fine, but had some heart racing and hard to breathe, so decided to let them check it out. Hopefully just overnight.Hard to post on this thing but I'll post more about what I've found out about this. It does suck, keep your head up. We'll both get thru

2009-07-12 3:59 AM

in reply to: #2278778

Veteran

455

Limerick, Ireland

Subject: RE: Tri after multiple PE

Sorry to hear that! I'm not too bad- pains in the chest are not as often and my heart is usually ok, unless I have a panic attack. Hope you[re ok there! Sending positive vibes!

RedCorvette

2009-07-12 10:57 AM

in reply to: #2272147

Champion

7036

Sarasota, FL

Subject: RE: Tri after multiple PE

I've been on Coumadin for eight and half years due to getting a mechanical heart valve. My theraputic range is an INR of 2.5 - 3.5. INR can be affected by both diet and activity (consistency in both helps). I get my blood tested every 6-8 weeks. I get tested at the local Coumadin clinic that is associated with my cardiologist's office, but they are trying to persuade me to get a home test unit and do it myself.

You certainly need to listen to your doctor's advice until they can diagnose the cause of your condition. Restricting your activity during this time is certainly prudent.

That being said, being on Coumadin itself has not been a big deal for me personally. Certainly my underlying condition is different than yours, but my doctors have not put me on any restrictions due to the Coumadin (my PCP is also a triathlete).

While it is true that it takes your blood longer to clot, Coumadin does not cause bleeding. If you do something traumatic enough to cause internal bleeding then you've got pretty serious problems, Coumadin or not.

The increase in marginal risk from being on Coumadin while cycling is acceptable from my personal viewpopint. I've crashed on my bike at +20 mph and cracked my helmet on the pavement, but came away with only some road rash and a torn jersey.

Your first priority needs to be finding out what's going on, and then making informed decisions going forward about your activities.

Best wishes,

Mark

CarlG

2009-07-12 3:41 PM

in reply to: #2272147

Expert

727

South Windsor CT

Subject: RE: Tri after multiple PE

Chris, did your doc want to consider an IVC filter?

Edited by Crank-snapper 2009-07-12 3:42 PM

2009-07-12 11:08 PM

in reply to: #2279421

Subject: RE: Tri after multiple PE

Crank-snapper - 2009-07-12 1:41 PM Chris, did your doc want to consider an IVC filter?

No, cuz they can't find any source for the clot, so there's nothing really to block

So far:
leg ultrasound negative
upper body US negative
abdomen/pelvis CT negative
Protein S/C negative'
Factor V Leiden negative
20210 mutation negative
homocystine negative
Antithrombonin 3 negative

Seeing a hematologist next week to discuss what else if anything needs to be done

Only thing we can pin it to is doing wildflower long course, drinking beer that night, then a 5 hour drive in the car cming home, about 20 days prior to onset of symptoms

2009-07-14 5:32 AM

in reply to: #2272147

Veteran

455

Limerick, Ireland

Subject: RE: Tri after multiple PE

Quick upadate- they originally thought I got this from the pill and my previous smoking didn't help but now they're not so sure any more (too many clots, and as such I don't fit the profile) so I'm getting more test- heart echo and bloods. I'm black and blue at this stage. How are you Chris? You out yet?

2009-07-14 1:35 PM

in reply to: #2283296

Subject: RE: Tri after multiple PE

Cead_Mille_Failte - 2009-07-14 3:32 AM Quick upadate- they originally thought I got this from the pill and my previous smoking didn't help but now they're not so sure any more (too many clots, and as such I don't fit the profile) so I'm getting more test- heart echo and bloods. I'm black and blue at this stage. How are you Chris? You out yet?

it's so frustrating, sorry. Yeah, I am actually back at work today, but it's tough, I get tired easily..... Are you out?

Socks

2009-07-14 8:53 PM

in reply to: #2272147

Champion

7704

Williamston, Michigan

Subject: RE: Tri after multiple PE

WOW I am so sorry guys that totally SUCKS. Be very careful with return to sport. The trainer is a good thing. So is swimming

2009-07-19 6:47 AM

in reply to: #2284691

Veteran

455

Limerick, Ireland

Subject: RE: Tri after multiple PE

ChrisM - 2009-07-14 7:35 PM

it's so frustrating, sorry. Yeah, I am actually back at work today, but it's tough, I get tired easily..... Are you out?

Hey, finally back home but probably won't get back to work until Wed/Thur. Yeah, getting tired is the worst- I can't do anything. Sooooooooooooooooooooooooooooooooo frustraiting after training twice a day, 5 days a week. I was supposed to race yesterday but spent all day long on the sofa instead- this is so bad. I'm hoping I'll be able to start some training in September- you know slowly building my base fitness for the next season. But in all fairness I don't know if I'm ever gonna be fine and nobody could answer that for me. That really sucks.

2009-07-19 3:06 PM

in reply to: #2272147

Subject: RE: Tri after multiple PE

Take it slow. Took me a few days to get up on my feet. First day driving in felt a little woozy on occasion. Your body is still healing. I agree, I went from 8-14 hours a week training and doing a half ironman in the beginning of May to riding the couch for the last 3 weeks. When I do start exercising again, hopefully this week... it'll be just like starting over, and i'll have to go real slow.

Just try to live as normal a life as possible

As to what happened and resolution, I agree. They're trying to figure outwhy it happened. I have my theory but the hematologist said it wasn't compelling...

As for support, I found this forum that seems to have a number of folks from your neck of the woods (relatively). http://www.dailystrength.org/c/Pulmonary-Embolism/forum I am cjmenjou there. For me, it helps a bit hearing about other people going thru similar things.