Learning About Pulmonary Embolism
December 16, 2011 7:32 PM   Subscribe

How long does it take for breathing to return to normal after Pulmonary Embolism?

I was just in hospital for three days after doctors discovered a Deep Vein Thrombosis from my ankle up into my abdomen and Pulmonary Embolism (both lobes, three nodes, one "Saddle) that likely began back in April. My only symptoms were shortness of breath that had grown steadily worse and a small area of pain when I sat just right. I never coughed once, which the doctor found surprising. I quit the pill the day before I landed in the ER and I'm doing isometrics on the couch as I heal a broken bone so risk factors are greatly reduced.

Everyone in the hospital was wonderful but no one could tell me much about the pulmonary part. I only speak to the doctor's assistant now and if I say anything about shortness of breath she talks about sending me back to the ER. As of today my blood is "therapeutic," so I need not do any more shots, just the daily Coumadin. Yet the shortness of breath isn't any better than before the ER and might be a little worse. I'd like to learn all I can about the healing of the lungs, what it looks like, how long it takes, how much the typical patient should exert, and whether it's possible that some damage may be permanent after this much time. I'm not doing any pulmonary therapy and my oxygen level at rest in hospital was usually 95-97%.

You're not my doctor, but if there is any general information from experience or other expertise…
posted by R2WeTwo to Health & Fitness (7 answers total) 1 user marked this as a favorite
If shortness of breath being worse means you need to go back to the ER, GO BACK TO THE ER. This is not something to mess around with.

I know how much it sucks to go, the lost sleep, the expense...but you really need to keep breathing, okay?

At the very least call a nurse and be honest with them.
posted by the young rope-rider at 7:38 PM on December 16, 2011 [1 favorite]

I am surprised the Thrombosis clinic would not have given you some idea.I would imagine the timeline can vary a lot due to individual differences though - it took almost a year before all my symptoms seemed clear.

Of course breathing got a lot easier once the clot had cleared ( I had almost the same lung parameters as you but broken ankle triggered mine)The process included home care and self administered blood thinner injections and medication. Unfortunately the injections burn to a certain extent :(

The entire time I had to go to a thrombosis clinic weekly (or so) to get blood tests to track the blood thinner levels.(IMPORTANT!)

I had to get periodic CAT scans to track the clot size reductions etc .- and finally a lung test with radioactive "dust" to allow a high- res lung image checking for damage.While my scan showed no permanent damage-I still have issue breathing now and then that I did not have before the clot.I am not so happy to be informed that post clot -one becomes more susceptible to future clots.

I breathed like I had a broken rib for close to 6.5 months (short painful breaths)-which was uber challenging as I had zero help available and had recently gotten over a duodenal ulcer and pancreatic damage /perm chronic pain in spine and other extremities. For me (other then can cause death part) the embolism was the least problematic and painful. I include this info as this might have extended my recovery/results and you may have a lot shorter recovery etc if your health is decent otherwise.

The Thrombosis clinic should really be able to inform/educate you though.

Take the fact that this can be mortal seriously though....if your breathing gets bad or pain/more clot feeling etc..go to the emergency!

P.S. as an ex scuba instructor and diver-I thought I was well educated about the process-I learned a lot more from the Thrombosis clinic (great people I had) I was very surprised to find out how often pregnant women encounter clots and embolisms-THAT must be hell on wheels.

Good luck
posted by plumberonkarst at 8:03 PM on December 16, 2011

Response by poster: Oh but the injections need not burn! My first two did then a senior nurse showed me the tricks for avoiding burning, bruising, and bleeding:

Enter at a 45-degree angle.
Press the plunger slowly, take about five seconds.
Hold the needle in place for ten more seconds before pulling it out.

Not a drop of blood nor any pain or bruising. And I needed an ice pack for a half hour after my first, non-informed, shot!
posted by R2WeTwo at 8:08 PM on December 16, 2011

I had a large bilateral PE in 2007, and I was in the ICU for about a week and ordered to be at home for the next 10 days. I never coughed either, and was not short of breath most of the time while the clots were building. The length of time had to do in part with the following, which may be factors in your case:

1) even if your blood level is therapeutic, the clots may not be completely broken up yet. The blood level means your body shouldn't form new ones, but the old ones don't disappear overnight. Eventually they are supposed to break up and go away.

2) You may have some heart damage, at least I did. This caused discomfort in my chest for a bit, although it healed. My primary symptom was chest pain since I only had shortness of breath after a lot of exertion up until the day I went in the ER when walking made it impossible to breathe. Maybe that is confusing you?

3) I was in bad shape and had managed to strain my a muscle trying to get enough air into my lungs.

Also, you may just be noticing what you ignored before- in my case the symptoms came on so gradually that I did not realize what was happening, but once I was hospitalized, I became hyper aware.

Finally, I did manage to get pneumonia not too long after the pes, so that is something to rule out. Don't you have to go see someone to get your INR checked regularly? They may be helpful.
posted by t_rex_raaar at 9:24 PM on December 16, 2011

I was shown a method somewhat like that by the home-care nurse-no matter how I injected -it burned...god awful stuff injecting for months at a time.I did not experienced bleeding or bruising thankfully.

On the subject of needles...Thrombosis staff was a lifesaver as standard staff could not get blood due to tattoos and vein scarring( avg 7 or 8 tries each time- THAT bruised). Utterly painless needle insertion is worth it's weight in gold.
posted by plumberonkarst at 9:28 PM on December 16, 2011

Response by poster: T_Rex, that's intriguing, yet I think it's lung and not heart because it's worse after lying flat or on my side. Do you know how one distinguishes between heart and lung damage?
posted by R2WeTwo at 11:18 PM on December 16, 2011

Best answer: My experience:

Large bilateral PE in the summer of 2008. I've been having DVTs on and off (despite medication) since 2003, so this wasn't a huge surprise, but it sucked donkeyballs, especially since my main symptom was significant chest pain. I was in the hospital for two days, then released on bed rest for a good 10 days. I was 23 at the time and in pretty good shape (we hypothesized that the PE was brought on by a DVT that must have developed while I was out backpacking for a week).

I had difficulty breathing due to pain for about two weeks after initially going to the hospital. During this time I slept (& mostly stayed) on the couch where I could stay sitting up, which made breathing the least painful. After that I found it easier to move around without running out of breath, although I was moving pretty slow. About a month afterwards I could slowly go up a flight of stairs, but I'd be breathing like I was two miles into long run. I'd say it was about three months before I could walk around looking (if not feeling) normally without a ton of huffing and puffing?

It was about six months in that I felt comfortable with starting exercising again (beyond gentle walking), and about 12 months before I had enough lung capacity where I could really push myself to the point where I could get muscle fatigue.

Now, three years down the road, I feel fine, altho I do get out of breath a bit quicker than I did before the PE - but that just might be the fact that I exercise less in general and work in an office all day... However, I do know from blood draws that my blood is never as bright red as it was prior to the PE, which suggests that it's not quite as oxygenated as it was before.

If you haven't found it yet, fvleiden.org is a great resource about DVTs, PEs, and being on coumadin (it's an annoying, annoying drug to try to keep constant).

Feel free to Memail me if you have any specific questions
posted by Gori Girl at 1:04 AM on December 18, 2011

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