Hi,

How you live is prevention. If he's had more than one clotting event, then normally the recommendation is life long anticoagulation.

I think when it comes to weight as being a risk factor, sure, but I think being sedentary is more a risk factor, and I actually think there are often a combination of things that make some people more prone to clotting, not just one thing. And too sometimes there's no real identifiable reason for clots. Many people here and on the DVT board have had multiple clots and no idea why. But the good news is we have access to medication to prevent it.

It can take a while to recover after having a PE. There is usually a period of fatigue and residual chest discomfort, but honestly, he will recover and he will be ok. I suspect his docs will recommend a consultation with a hematologist at some point to figure out what's next.

I'm on life long warfarin because of more than one clotting event and I live an absolutely normal life. So take heart that this is not all doom and gloom.

Take a deep breath. Things will be ok.

Hi and welcome to you both! I'm going to "ditto" everything that RMB said, especially the part about taking a deep breath.

First, PEs are most dangerous before they're diagnosed. For a lot of patients, getting diagnosed can be the hardest part because the symptoms mimic other things. He's been diagnosed and he's being treated and he's already starting on the healing process. The further out you get from diagnosis, the less dangerous those clots are. At this point, he's already much, much safer than he was 2-3 days ago before he was diagnosed.

I had my first DVT when I was 30, my second one when I was 34, and I was diagnosed with multiple bilateral (in both lungs) PEs when I was 35. I became a lifer on warfarin at that point, which was just fine with me because having the PEs was super traumatic for me and, seriously, who wants to go go through that again?? Like RMB, I've got a nice, normal life going on here, so staying on the meds is absolutely manageable.

Right now, you don't need to focus on the clots coming back. Get yourselves over this initial shock, get things a little more settled, get him well on the path to recovery, and then start thinking about the long-terms things. He's being treated right now and he should be on his way out of any danger for a while. You can start sorting out the long-term plan in a few months once this hard part is over. The what-ifs can absolutely drive you nuts if you let them.

It sounds like they've already taken the tests for clotting disorders. Those might shed a light on things, but there are those of us who have clotted more than once who don't know why. I've had all the tests multiple times and I'm negative for everything. They told me once that I might have something that they just don't know about yet. They're learning new things about clotting every day, so maybe some day I'll know what I have.

For me, in a lot of ways, the mental recovery was harder than the physical recovery. I'd had clots before, but PEs are really different from DVTs. It's hard feeling like things could've gone bad. It took me a while to sort through it, and I spent some time with a therapist who specialized in traumatic events. I also took some anxiety meds. If those aren't things either of you are interested in, you might look at other ways of dealing with stress. Meditation, journaling, etc. Just be alert for the anxiety, because it really can take you both over, if you let it.

The next few weeks might be hard for you both. A lot of folks still have shortness of breath (SOB), pain, and fatigue come and go for a while. Hot/cold/humid weather can make it worse, as can anxiety or sudden increases in activity. The only really guarantee is that it will take longer than you want it to.

Hang in there! Read around on the site! Keep us posted on how both of you are doing.

I want to thank both of you guys for your response and support

^^ rmb + tossnturn are totally correct, when i got diagnosed with PE earlier last week, i was totally terrified, my gf was in the same situation as you, it takes time.. im even younger, (28) and have been active my whole life, and yet somehow i managed a PE in my right lung

i've been staying positive despite it all and followed through with anticoagulation treatment.... the last few days i've learn to let it go and just focus on whats in front of me.. too much thinking of the "what ifs"

for the moment im just following the doc's orders on giving my body a really good rest for the oncoming weeks

let me tell ya this has been a life changing process for me
as PRIOR to my E.R visit (last week) for chest pains I WAS heavily into fitness training 3-5 days a week

just hang in there, for me after a week of treatment.. I have personally noticed a lighter amounts of chest pain.. this is different for everyone but just my personal observation :)

kristiebear: How are you and your husband holding up? I hope you're both doing okay.

The worry and anxiety is all too normal, as most of us have found out. I was diagnosed with my PE (one small clot in each lung) on the 4th, but my symptoms only started showing up on the 3rd. Day 13 post PE and I'm still physically, mentally, and emotionally exhausted. I can get up and walk around for a bit, even take a walk around the couldesac once or twice (depending on how I feel) or the island in my kitchen about 10 times before I need to sit down and rest.

I've learned to take it day by day, and that rest is the biggest factor here. Do not let/make him push himself. I tried going back to school a few days ago, and that was a mistake. My body was not ready for that yet. It will probably be another week before I go back part-time.

Weight can be a factor, or so one of my nurses said, but never start a diet without consulting your doctor first! I know it's hard to stay strong, but anxiety and worrying can only make it all worse. It is rather annoying to hear "you are lucky to be alive" rather than "you can expect to feel this and this and this" after experiencing a PE. The good thing we have is this support group, though. It's helped me ask my doctor some questions that I would have never even thought of.

We're here for you. I've read a few people suggest a therapist for someone to just talk to, and it may help with peace of mind. I'm thinking about finding one myself, because talking to people helps me keep my mind occupied.

My doctor said exercise/diet (especially drinking water)can definitely help.Dehydration can increase chances of blood clots. Did you hear back about genetic testing? I got tested and they found a heterozygous factor v Leiden gene mutation. It can be overwhelming at first but its very manageable. Healing with PE takes time but it does get better. It's an adjustment but there are a lot of people who live long and healthy lives on Warfarin. Now this is my first PE but i also work in a family practice and there are plenty of patients on lifetime treatment, some MUCH older than your husband with other health conditions who are doing very well.