That sucks...I hope you recover quickly.

However, as someone who has been on the rat poison for 6.5 years (and will be for life), it really ain't that bad (and surer as hell beats the alternative!)

The biggest lifestyle modification I made was to stop bike racing and take up tri's for my competitive release. Other than that, I avoid green veggies (hardly a sacrifice on my part) and only have one drink at night. (OK, I occasionally self-Medicare and have 2!). Buns is that I haven't had a hangover in almost 7 years...

Y can also look into the next-gen thinners (Eliquis, Pradaxa, etc) but there are some drawbacks to those as well...cost, no reversal agent for most (one has a reversal agent now), etc. I have discussed them multiple times with my hematologist and he continues to recommend warfarin for my needs. Check with your doc.

Have they been able to determine the cause of your PE's? Any underlying genetic issues...i.e. I have Factor V Leiden.

---

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

"If ever the time should come, when vain and aspiring men shall possess the highest seats in government, our country will stand in need of its experienced patriots to prevent its ruin." - Samuel Adams

Really, really truly sorry to hear this.

You may or may not know this but I had two as well (just cuz I've posted before, not cuz anyone should know who I am). Been on thinners for almost 10 years now. Yes, it's "rat poison," but yes, it also is saving my life because my body decided now is a good time to start clotting. FUll genetic workup and best they could come up with is a factor V issue

Unlike power though ^^^ I did not change my eating and drinking habits. I eat what I like, have a couple three... four... beers on the weekend. And they dose to my diet

As for riding, there's a few things I don't do, mainly riding on certain streets, and I ride the CT indoors 2-3 X a week (honestly I'd probably do this off of thinners). But I ride outdoors at least once a week and still race tris. Not crits though, but I never did :).

Only one bad crash, and it was pretty bad, but all turned out OK. I self test at home and keep my range at or around 2.0 (1.8-2.2 hopefully), to swing the odds in my favor. Day of my crash I was 2.0 as I had tested the night before

Everything else is pretty much the same, except for a pill every day. Still scuba dive, got a tattoo, ride rollercoasters, etc etc. The only thing I currently wouldn't do is going on an extended remote dive trip like i did pre PE (galapagos, cocos island), just because I don't want to screw up someone else's trip

And as power notes there are now drugs with more effective antidotes that are becoming more and more available. My dream is to have an antidote I can take with me on travel so I can go a little further than I am currently comfortable.

Chris, how was your tattoo experience? Did you tell your artist beforehand and discuss with your doc, etc?

---

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

"If ever the time should come, when vain and aspiring men shall possess the highest seats in government, our country will stand in need of its experienced patriots to prevent its ruin." - Samuel Adams

Yeah, artist said check with the doc, doc said just said skip one or two days before and test to make sure it's low. Artist said I bled less than most (as in hardly at all). Total non issue for me. Of course planning #2 for this off season :)

Thanks guys. Im a bit more calm now.
The idea of being a pin cushion and all the BS that surrounds "getting therapeutic" for a drug that .. I freakin hate.

So weird. I did a track session last night 3 x 1600 and did great.

My swim this morning was sluggish at best.

Warfarin shouldn't affect your physical performance. Hell, I'm stronger now (at 50, no less) than I was when I had my PE.

If you felt great last night, it was because you had a good session. If you were sluggish this AM, you were likely just tired from last night. Don't read too much into it.

LOL...my reminder just went off for me to take my pill. . Almost 7 years later and I still need a reminder to take my rat poison. You'd think it would be a habit by now!

You'll be fine, Lou...like Chris said, it really just amounts to taking a pill once a day and occasionally monitoring your INR. I hated the idea of being in meds for the rest of my life when diagnosed at 44. Now I don't even think about it.

---

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

"If ever the time should come, when vain and aspiring men shall possess the highest seats in government, our country will stand in need of its experienced patriots to prevent its ruin." - Samuel Adams

Along with some of the other guys/girls here, I've been on rat poison for 8 years (and will be forever), Apart from being pretty conscious of the need to NOT hit my head, I hardly think about it any more, and I REALLY struggled with the idea of having to take a drug to get to "normal" when I first started on them.

In practical terms, the "don't hit your head" ethos means that I don't do mass start bike races, and I only ride in groups with people I know well. Other than that, I don't feel many differences between before and after my PE episodes.

Sorry if this hijacks a bit, but can I ask how long you all took to recover? I had one almost a year to the day, I've been off Xarelto for 6 months, and I can't get my fitness back. Some days the legs feel great, but I constantly feel like I can't get a full breath. My endurance just sucks. It's like I have a belt squeezing me right at the bottom of my ribs. My lungs constantly feel raspy and like I need to cough, if that makes sense, even at rest. I go back and forth between thinking I need to push harder and grow, or lay off to allow them to heal more. Any advice is appreciated.

I had a couple of very tough months: just before I went into hospital, I had to stop twice while I was walking home from work because I was out of breath, and it took a while to get past that. I was also tired, and nauseous, and permanently wanted to cough.

Luckily I had a very sympathetic medical team, with one nurse who raced tris and who's married to a former Big 10 track guy. Their advice was to stop if it hurt, but to do whatever I wanted that didn't hurt, and to think of it in terms of recovery from a serious injury.

From memory, I think I spent that winter doing next to nothing; the spring and early summer I could workout a bit more consistently, but I did everything on my own because I didn't think I could handle anyone else's pace. Maybe by the end of that summer I went out with my old groups again? But it took another winter of not feeling great before I was back at any sort of competitive level.

Feel free to email me: gordon dot henderson at post dot harvard dot edu. If it helps at all, I can distinctly remember consciously giving up hope of ever competing again a long time before I actually got back into a start line.

Sorry to hear about a second PE.

I had a PE three years ago and was knocked down flat. Was very lucky in the first few days.

When I got out of the hospital, I did low intensity aerobic stuff such as elliptical to get my fitness back over a period of about six months.

Since then, I've done 70.3 world championships twice, Kona once, and a bunch of other stupid-ass feats of middle age exuberance.

I monitor my INR and my doctor knows what my lifestyle is. We keep the INR low (around 1.4, will go higher when mango seasons begins in a month!!) I ride in groups, I ride alone. My close friends whom I ride with know I'm on warfarin. When I ride alone, I tell my wife my route. In November, I got taken out by a scooter in Taipei traffic and went over the bars landing on my head. Split my Rudy helmet, but was fine. I didn't bleed to death.

I honestly feel that warfarin is in no way shape or form a limitation on my fitness or the kinds of activities I do. The residual effects of a PE are going to be different for everyone, ranging from nothing to more serious. You have to listen to your body and your doctors. If you get a doctor that tells you something is impossible, find another and see if she has more creative ideas. Stay positive, take your meds, work with your doctors, and believe. You will get there.

Echoing the above... It took me probably a good year and a half before I was back to pre PE shape. But then I made some other changes, lost a bit more weight, and got in better than pre-PE shape. I am not a worlds or Kona qualifier, but I've done 4 or 5 70.3s and set my PR while on thinners. Did IM Canada on thinners.

You don't really realize it (IMO) but i think PEs are there for a while before we start noticing symptoms and sometimes takes a while to diagnose, so that by the time we are treating, some damage may have been done. I had a partial lung infarction but far as I know that resolved. Just my way of saying don't underestimate the physiological effects of a PE on your fitness, even though you look or feel "in shape" you're still recovering.

I had the same feeling, like someone was just slightly compressing my lungs. Took a long time for that to completely go away.

BTW, my post was not meant to diminish what you are going through. I was absolutely devastated on my second diagnosis of PEs, I thought that all possibilities of training, racing, riding my bike, etc. had been extinguished. It took me a good long time to come to grips with it and figure out what I was comfortable doing and what I wasn't. It just so happens that things are not all that different from pre-PE days (and in some ways better).

I recall talking to an ER doc friend on a local dive trip about taking certain risks, and travelling to places like Indonesia where help might be a bit further away than I'd like, and I told her I just couldn't ever seeing traveling to a place like that while on thinners. To which she responded "until you can see it, and then you just choose to go." That stuck with me.

As I indicated above I had a bad crash last summer and broke several bones, punctured lung, even had a good lump on my head. It was all OK. Earlier this year I got a nasty cut in Honduras from some coral (stupid mistake) that took a few hours to stop bleeding. It was all OK. You will slowly expand the envelope of what is OK for you, even though it currently feels like you should be wrapped in bubble wrap

This may be a dumb question but what are y'all talking about? From the tone of the posts it sounds serious but I can't figure out what "PE" is. Hope it works out for you, whatever it is.

Pulmonary embolism, blood clot in the lung

Thx. Definitely sounds serious.

Hello ChrisM and All,

My wife is on Coumadin (Warfarin) and she is looking at starting home INR testing after a heart ablation.

Our insurance only pays for the Roche CoaguChek XS which looks like a good machine.

What device do you use and how do you like it?

.

---

Cheers, Neal

+1 mph Faster

That's the one i use, and I like it. I have to pay for the strips and usually get them off ebay or amazon for a not too bad price.

serious is an understatement. People die from PE all the time.
I nearly died from my first one.
This one I was so far out in front of, my new pulmonologist was impressed and started me on toradol - anti inflammatory pain killer.
This thing pretty much cleared right up in 2 days.
A battery, and I mean a full battery of testing still yet to reveal why I'm symptomatic.

All the doctors are extra blown away when they learn that my first PE was 2 years ago to the day !

Thanks for this thread and everyone who contributed, it helped me a lot. Sorry to hear about the second one, I'm so freaked out about having another. And yes, I almost died from mine as well. I coughed up blood the night before a 70.3, and the doctor said I would have definitely died had I gone out and tried it, which I was going to do until my wife forced me to the hospital. The doctor I spoke to earlier that day thought I had just pulled a muscle and that was why it hurt so bad to work out. He said just go out and loosen up and you'll be fine. Funny how much people don't understand the symptoms. Good luck with everything. I do know a few people on thinners for life, and they don't think it's too bad at all, just another thing to deal with.

I'm on thinners for life... party party. Taking Xarelto (Rivaroxaban) and so far so good. I've only been on thinners since late October, so about 6 months. So true about the symptoms not being understood... I have also read that many people won't even have PE symptoms.

My first 'noticeable' PE was in early June 2015. I thought I had a chest cold and that I'd shake it off... did an Olympic tri in late June (yes, I'm an idiot). Family doc also thought it was a chest infection, possibly pneumonia, and prescribed me antibiotics. Knowing that pleurisy can go along with pneumonia, I thought the diagnosis made sense and explained my chest/side pain. I was short of breath for months and kept convincing myself that it was the after-effects of a doozie of a chest infection. It wasn't until I turned blue and nearly passed out at work and was taken to hospital via ambulance that I found out that I'd been living with PEs for months. After discussing with the hospital docs, it sounds like I may have actually been getting them earlier than June and just wasn't showing symptoms, based on my HR data in Training Peaks.

Anyways, long story short, I'd had PEs in my lungs for so long, and they'd continued to pile-on in my pulmonary arteries, and I developed CTEPH - it's pulmonary hypertension caused by chronic blood clots. Oxygen exchange wasn't happening in the bottom half of both my lungs. I had the surgery to correct it in February (12 weeks post-op next week!) and have a pretty bad-ass scar as a memory of the whole experience. Already back to light cycling and running, and it's incredible how good I'm feeling breathing-wise (boom goes the dynamite).

I don't want to be alarmist, but knowing that many on ST are like-minded (ie. somewhat stubborn, half-decent at managing pain due to our tri experiences), I wanted to share the gory details... if you don't get better post-PE, if your shortness of breath doesn't improve and if you have side and chest pain, it'd be worth discussing with your doctor. CTEPH can take a long time to diagnose... I was 'lucky' in that I had massive PEs that almost killed me, so I had quite a bit of medical attention focused on me all at once, and by happy coincidence the Canadian CTEPH experts were just down the street from my work at the hospital I was taken to. CTEPH isn't common, but I've read stats that say that 1 in 25 people with PEs can develop it, so it's worth keeping on the radar if you don't get better post-PE.

If anyone wants more info, I'm happy to share more via replies or PMs. Love and healing vibes to you all.

~~~~~~~~ <-- healing vibes

Yeah, I was completely asymptomatic for my PE....had a DVT (was symptomatic, but just pre seated as a sore calf...no swelling or warm to touch, etc). Was diagnosed after my podiatrist told me to go to the ER (Had given me PRP for an Achilles injury and was in a walking boot) and sent home.

Next AM I was supposed to see my primary doc so he could teach me how to inject heparin...had two cups of coffee in the AM, no breakfast and felt a little light-headed. In hindsight, it was likely just the caffeine w/ no food, but went to my appt early just to be safe. They sent me to the ER and was diagnosed with the the PE. No chest pain, no shortness of breath, etc.

The strange thing for me was that I was in a life or death situation, but felt fine (other than a sore calf). When in situations like that, you think about being sick or seriously injured. Still don't think I have ever fully processed how serious the situation was simply because I never *felt* sick. Very strange dichotomy.

---

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

"If ever the time should come, when vain and aspiring men shall possess the highest seats in government, our country will stand in need of its experienced patriots to prevent its ruin." - Samuel Adams

I was in the hospital this weekend with my second PE in 13 months. In regards to my earlier post in this thread, I guess that's why I felt like I was going backwards in my recovery from the first. This one wasn't as bad as the first since I knew the symptoms and went in earlier. So, I'm in the club now and on blood thinners for life (right now Xarelto). I'm oddly calm about it and almost a little happy just because it means I'll be (mostly?) safe from another one. Sucks that I think I have to be done with road racing since that has been my primary sport, but I guess I can go about life without the constant worry of having a PE again. Not a fun process though.

That sucks....sorry to hear it. have they determined a root cause (Factor V Leiden, etc)?

Like you, my focus (for 20+ years) had been road racing when I was diagnosed. I had done a tri the year I was diagnosed, mostly as a one-off event. So now it is my outlet for my competitive juices.

Still miss road racing a lot, but you just adapt and move on.

Good luck and good health!

---

Chicago Cubs - 2016 WORLD SERIES Champions!!!!

"If ever the time should come, when vain and aspiring men shall possess the highest seats in government, our country will stand in need of its experienced patriots to prevent its ruin." - Samuel Adams

Im sorry to hear that your second PE has sidelined you as well.