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Discussion:
shortness of breath 6 months after PE
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Hi everyone, I'm brand new to this site so hopefully some of you can help me.

Starting from the beginning, I'm a 21 year old college student. Last October I was hospitalized for bilateral PEs and found out I have a genetic clotting disorder (Factor V leiden). I thought the pain I was experiencing in my chest was muscular and didn't go to the doctor for 5 days. It's been six months now, and I'm still tired and short of breath.

The fatigue is obviously a problem and has affected my grades. But I'm more concerned about the shortness of breath. Walking across campus, having a fast-paced or high stress conversation (ie a job interview), or even holding my breath while showering makes me out of breath.

I saw my hematogist today in hopes of being taken off the warfarin, but she said since I'm still short of breath she can't take me off the meds. I'm going back to the hospital tomorrow for an echo and I'm very scared now that I've had time to look into what she said they were checking for (pulmonary hypertension). The prognosis doesn't seem promising if that's what I have.

What else could be causing the shortness of breath? My hematologist is setting me up with a pulmonary doctor, but I'm just so worried about my health at this point I need answers.

Thank you!
Posted on 04/30/09, 11:05 pm
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Reply #1 - 05/01/09  1:12am
" mblue, Don't worry to much about still having shortness of breath. Some people heal quicker than others and some take a lot longer. Your body just went through a very traumatic experience and you survived. it takes time for your body to heal, so give it a chance. Just remember "YOU ARE A SURVIVOR" I am a 3 time PE survivor and sometimes I still get short of breath and sometimes the pain comes back especially when my INR gets low. My therapeutic levels are between 2.5-3.5 so if I drop my chest hurts. You will eventually get to feeling better. I'm surprised your doctor is even considering taking you off the warfarin considering your tested positive for factor V Leiden. You will always be at risk for repeated clots. Sorry I'm not trying to scare you but you should always know the facts.
Welcome to our support group, and if you ever need any information don't be afraid to ask, or even if you want to just talk there is always someone on line who will listen. We're here for you.
Take care and take it one day at a time
HUGS
Ferr "
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Reply #2 - 05/01/09  4:23am
" Hi there mblue!
Welcome to this little group of PE survivors. Believe me it has been a fantastic source of strength for me even though my PEs did cause pulmonary hypertension. Yhe PH group is nowhere near as active as this one so I don't go on there very often.
Breathlessness can be a sign of PH but there are lots of other reasons for your breathlessness so don't worry. You could find that you are anaemic and just need an iron boost - or it is possible that there is some lung damage from the clots - but if your pulmonary pressure is high just remember that the sooner it is diagnosed the better.
I was in hospital for multiple PEs last June and diagnosed with PH in November. I am taking sildenafil tablets (commonly known as viagra !!!) and am now back at work in a busy library, standing up for most of the time, carrying books about etc - and - I've just come back from visiting my son in Dubai - a 7 hour flight each way !!! So please try not to worry too much - whatever your results there is treatment available and I hope you'll be feeling better very soon - love Sandi xx "
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Reply #3 - 05/01/09  12:48pm
" I was getting evaluated for warfarin cessation when I was about 11 months post-PE. Having never been previously medicated in my life, I was anxiously hoping to get a clean bill of health.
What provided a better picture in my case was, along with the belated finding of the hematologist (FVL Het), a follow on CT scan of the chest and a follow on doppler of the affected leg both showed residual issues.
The news was what I needed to hear, even if not what I wanted to hear.
Nonetheless I still consider possibility of long-term incremental improvement while I continue to live with all this. By all appearances I continue to do nearly all the things I did before. "
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Reply #4 - 05/01/09  2:51pm
" they think mine may be related to asthma... Didn't know i had it until recently "
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Reply #5 - 05/01/09  3:42pm
" I wouldn't worry too much - many here continue to have shortness of breath for several months depending on severity, healing time, etc. And even if you have pulmonary hypertension it could very well be temporary and it's totally treatable if not.

An odd thing that seems to come up is that people find themselves diagnosed with asthma after having a PE, having never received an asthma diagnosis before. It's strange, but I wonder if somehow having a PE "triggers" asthma in some people?

I was diagnosed with non-chronic allergy-related asthma a few years before my PE, and it never really bothered me too much (I rarely used an inhaler - maybe a few times a year). It's definitely gotten worse after the PE, and now I use an inhaler a few times a month. I can never really see any rhyme or reason as to what triggers it on one day and not the other. It mostly happens at night (I've read that your body sort of slows down non-essential functions while you sleep and an unfortunate side effect of this is that your airways become somewhat restricted while sleeping - hence, why most asthma attacks happen at night).

Anyway, it might be worth getting checked out for asthma?

Good luck! "
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Reply #6 - 05/05/09  11:35pm
" thank you all for your encouragement and reassurance. I got my results back today and there was nothing that suggested heart or lung problems. Cheers and smiles, for that :-)

Ferr, I'm FVL heterozygous. My PEs happened during midterm exam time after a weekend of sitting around studying. The support website that I look at for FVL says that it's normal to come off after the 6 mo and go back on LMW heparin when I decide to start a family. I don't know, I'm glad to be coming off of it, it makes me terribly tired and I'm trying to complete my degree and start a career.

This has all just been a whirlwind of emotions and after my doctor suggesting that it might be pulmonary hypertension I got very scared. My medical bills are huge, too. Seems like everything is going wrong :-( I try to think positively but I focus on how bad it could have been -- my doctors were painfully honest; with the size, amount, and extent of my clots they were surprised I was alive.

But anyways, I really appreciate all your responses! "
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Reply #7 - 05/06/09  11:31am
" mblue, Here's something that might cheer you up. My daughter was in the Pediatric intensive care unit for 18 months before she was allowed to come home. We had great insurance ( I thought) After she was discharged from the hospital the bill arrived in 3 manila envelopes (yes 3) the total bill was 2 1/2 million dollars with our out of pocket expenses coming to around 280,000.00. I'll never forget the day I received the bill from the hospital. I sat down on the floor and started laughing. Seriously I laughed until I finally cried. I knew i would never see that kind of money in my lifetime. Then to make matters worse while I was sitting there I got a call from a collection agency for a 23.76 medical bill and I started laughing harder and hung up on them, after I told them to get in line. "

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