Hi, it can take a while to start feeling better, and sometimes, it can feel like you are getting worse, because you may have more chest or back pain after diagnosis, or the you may find you still feel short of breath, because you're back home and doing more than you were when you were laid up in the hospital. When you're in the hospital for a while, you're also recovering from that, plus the PE. It's a lot. I think recovery is kind of different for everyone, but I can say for me, the first couple of months were rough, and then by month 3 I felt better. By the 6 month mark, I felt great. That doesn't mean you can't do anything for 3 months. I was working, and trying to be active. But I definitely felt not great during some of that.

I think you'd be surprised at the number of athletes here, There can be a connection to lower heart rate, dehydration, traveling to events, etc that can increase the risk for clots.

It seems that diagnosis is bleak but the good news is that you were diagnosed. Once your diagnosed and treated, odds are really great that you are not in danger. Not getting diagnosed in time is the bleak part. It's a lot to get your mind around.

Hang in there!

I think it depends! In my case, I was training for a half marathon when I had my PE/infarct. Two months later, I got the all clear to start excersing and was actually feeling good. I did a couple gentle yoga sessions and ran two one-milers and even bumped it up to a 1.5 (so crazy after being able to run so much further). I felt ok at the time, but after that I started having crazy pain again and haven't exercised since. I'm now 3 months out and have been given a diagnosis of costochondritis, so I guess I'll stick to walking for now. I have good days and bad days, but am afraid to push it on the good days!

Wow! While the temptation to swim, bike and run are all in my head, there is NO way I can even consider any one of the three, namely because on Day 4 out of the Hospital, my 12 day first stay, while just awaking one day, I was brought to my knees, stabbing chest pain, like someone was cutting out my heart with no anesthesia! I am a positive person, but I'd be a liar if I didn't tell you, I thought I had thrown or dislodged a clot!
Back to ER I went. This time the result of 5 infarcts, and seeing my right lung damage myself, the images scared me. I don't scare easily, but two areas i always was proactive in, was my health and my foundation in faith. Both were shaken. After a bad car crash in 2000, I was in a wheelchair for 16 mos, broken bones and torn muscles. 17 years younger, and fit then too, it took 9 surgeries, 4 years, but I made it back to triathlons. I bawled the very first finish line and my medical team, family and friends were all there rooting me on. One drunk kid plowing into me and forcing me into oncoming traffic, 5 of us were badly hurt and beat the odds, we were so blessed.

This is vastly different. At 55 in 4 months, I am humbled enough to know age makes a difference. I did smile when 2 nurses thought I was 40 not 54! LOL this time around.

Broken bones and torn muscles healing make sense to me. You can SEE progress so much easier.

I am feeling pretty good with my one mile walk, and 30 mins of yoga, no extreme positions though ofcourse.

I am concerned with the diverse and erratic vital signs highs and lows. Typical pulse for me is low 60's. 110/70. I
I have had systolic reads of 65-199!

I have had diastolic reads of 50-130.

I have had pulse readings ranging from 48-126.

I feel like that must be hard on my heart and having worked hard to have a healthy one, it's a definite concern.

Has anyone here needed to stay on Oxygen too and if so how did you wean yourself off?

And did any of you keep doctor appts on a regular basis during your initial recovery?

It strikes me odd that patients are basically "released" with very little guidance from any professional. In our case, one oops can kill us.

And BTW, I was surprised how many active people have had DVTs. For me, MRSA and surgery apparently caused mine. It is hard to believe I could run, bike and swim 2-3 hrs and now taking a shower makes me gasp. SMH. Humbling.

My BP was lower after the PE, and has stayed permanently lower, but still in normal range, ever since. My pulse is now usually between 80-90, which is a bit higher than it was before the PE, but still in normal range. I'm not an athlete but it took a while for my heart rate to not sky rocket when exercising (walking on the treadmill and bike riding). I would say consult your doctor about your vitals and concerns over your heart, to see if there's something you should or shouldn't be doing.

And yeah, I kept all my appointments. I had heart damage from the PE, so I was under a cardiologist care for a while, even after the damage corrected itself over time. Still he was never concerned with my vitals and encouraged exercise although did say to take it slow initially and work up to more activity over time.

I think the reason there's little guidance is because most doctors in hospitals never see their patients again after releasing them so they may not see what goes on during recovery. They're more focused on making sure you're no longer in danger so that they can send you home. After discharge, unless a doctor tells you specifically you should not exercise or that you're at risk if you do x, y and z, I don't think we're at any higher risk for death than most people, except maybe due to a risk for bleeds due to anticoagulants or if there's some complication from the PE that has occurred. It's hard to get your head around having this life threatening situation and then a week later be told you're ok. It seems like we should be more delicate post diagnosis, but in most cases we are not.

PS: My PEs were in 2007 and I have made a complete recovery. I had an infarction, the heart damage, a vena cava filter and a second DVT after my first, and am on life long anticoagulants, and I am still here with no real issues except an ugly and sometimes painful leg and some residual lung irritation when it's cold or humid outside. I'm fine and you will be too. You sound tough as hell which I think goes a long way!

Thank you. Makes sense. I was lucky that no internal heart damage was done. No plaque or sclerosis found either. Phew! My heart was shocked and is a bit enlarged. Doctors said that will return to normal in 3 mos.

The biggest damage I sustained was my lungs. My body is scrambling to find balance with my 4 clots remaining, 5 infarcts and an unbalanced thyroid. As for me, I just want to be told something a bit more positive. Not "a ticking time bomb" label. 5 docs feel I am extremely blessed. Having had a clot burden, 6-8mm clots was certainly unnerving, but now I am told "don't push for 3 mos). The deception with this malady is feeling no fatigue at all. My personal experience involves chest pain, lightheadedness, and a need for Oxygen. I just want to hear other personal accounts of other folks' journey.

We learn thru our own experience and obtain hope thru others knowing we are not alone as we can feel.