Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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r6leslie 04/10/2011

Hi all,
it's been a while since i've posted: I have not been the same since my PE and DVT in June 09....I had 7 months of coumadine.....had a dislocated knee that needed surgery but no surgeon would touch cause the PE...healed bad, then hurt my left elbow, had to wait a yr to have it repaired, lots of damaged dead tissue taken out...asked if it was caused from the coumadin, PE...drs said could be but not definite...so surgery on elbow dec. 10....still going though a very long recovery...healing super slow....then boom...almost 4 weeks ago, wake up screaming from back pain....couldn't move...back to ER, actually got admitted to hospital for 5 days...they said I had muscle, nerve spasm inflamation shown on MRI...I did not do anything to injure my back....I ask again, does this have anything to do with my past PE?
I am crying here....I feel like I have not been the same since the PE....my body is so jacked up....can't get healthy....no physical exercise cause the bad knee and elbow...and now the back...4 weeks now of waking up in the most terrible pain....
ANYONE OUT THERE SUFFERING LIKE THIS? I can't take it...if feel like I'm going to go crazy...I can't do my work right....and can't stop working....I can't do anything....no happiness...I had hobbies like knitting after the PE....but the bad arm, now I cant use it and I am going nutty.....
I just want to know if this is something that is usual or if others still are having long term effects.....sometimes I think it's because the coumadin...it's like rat poison, does it just jack up your body...and if so, then what kind of like am I going to have....quality of life really sucks right now...I am going crazy...and the dr's say they don't know why I have all these pains and things happening....are there specialty dr's for this?.....I'm sorry I keep going on, but I am really sad now.....I don't want to be like this for the rest of my life....and 2 yrs is already along time for me.....so any advice is appreciated!

deleted_user 04/10/2011

New to this myselft my diganosis was March 12th after a trip to the Caribben. I have alot of pain in my lungs and back and if it were not for my BF and kids I woudl rather have it over. I have no energy, not working because of the stress, and am tired of hospitals. It feels like someone is setting on my chest most of the time, like I can't breathe and my concentration sucks. It is even hard for me to type and I was a court reporter for 12 yrs. I am on coumadin but they can not get my levels right I am either 0.7 or 6!!! just in a matter of days. It sucks. Meechelle

deleted_user 04/10/2011

This is really hard, I am a year and three months post pe,s in both lungs on warfarin for life. I still feel like crap, sob most of the time, still get pains in chest. When will this end and my life get to a place where I feel comfortable, hard when you have kids and they want to go places and you feel so ill all the time. On this site you hear people are doing so well and are back to normal, whats happened to us.

deleted_user 04/10/2011

Same problem here. I hit my one year anniversary on Thursday. Still frequently short of breath and have random pains in my chest and upper back. I picked up a virus last week with those symptoms, so everything intensified suddenly and I thought I was having another one. And then the anti-inflammatory the doc gave me for the back pain made my feet and legs swell up like balloons.

I'm really glad I'm off the Warfarin, but I live in fear I'll end up on it for life.

deleted_user 04/10/2011

I know where you are coming from. Different doctors have told me since day 7 of my SOB that I need anti-anxiety meds! It took them a month to find my PE/DVT I only had SOB for symptom, my D-dimer was negative and my oxygen level was always 99% (even with PE's in place) since last July. 2 weeks after PE discovery, chest pains and fuzzy thinking started - another CT and PE's are gone and still very sob. Docs suggest anxiety meds. Went to Mayo Clinic for 2nd opinion and they found low ferritin level (iron). I was having anemic symptoms. After 2 months of 3 iron pills a day all symptoms went away! I had a month at Christmas of feeling almost normal. In January I have been diagnosed with pleurosy, pneumonia and costrochondritis - all of which SOB and chest pain are symptoms. 2 more CT's and still no new blood clots. It has been 9 months of this and I seem to just go from one thing to another. Very frustrated. But it is absolutely NOT in my head. I fired my doctor of 5 years when he told me a ferritin level of 14 was not low iron because my hemoglobin was 15.2 It took me 5 minutes on the internet to figure out he was an idiot. Good luck to all of you lingering survivors out there.

TossNTurn 04/10/2011

It has really seemed like one thng after another during recovery. I'm about 15 months out now and for the most part I think I'm over the PEs. I am a lifer though, which means that I'm stuck with the blood draws and dietary issues ... at least for a while.

The last year has seemed like one health problem after another. I'm not sure all (or any!) of them are connected to the PEs. Most of them probably aren't, although coming so close after the PEs it does seem like they are all connected in my head. It is incredibly frustrating to make the repeat trips to the doctor. It also seems like something new pops up just when I have crossed a previous health issue off my list. It is beyond draining some days and makes me just want to hide under my bed and not come out.

In your case ... I think I would consult specialists and talk to folks. I've never heard of the stuff you're describing being connected to warfarin. Check with some sports-medicine specialists on the knee and elbow. It doesn't seem right that there is nothing that can be done. Also, maybe a chiroprator for your back?

I don't know what to suggest and I can imagine that you feel overwhelmed and exhausted with it all. I hope you find something that will help soon. Best wishes.

r6leslie 04/10/2011

Thank you all.....replies mean soooo very much....cried half of today and want to cry the rest of the night.....I was not like this before the PE.....I was a runner, biker, rode upside down roller coasters, wrestled with my boys, did spontaneous road trips....I use to boat....I like to swim....go out to the sun, or rain and be active.....and puff!!! all gone after the PE....it is hard for me to believe that it did not screw up my body in such an extraordinary way that I cannot do anything physical any more.....dr's say "well we don't know but you don't have a PE right now" so what can they do???? I don't know if I want an anwer, I want validation...I want someone to say, "yes your body is "F" up because of the PE and DVT....not, "oh go on with your life, you lived and you should be back to normal".....but when, when do I go back to "normal".....it will be 2 yrs in June....I am tired....no doubt that I am depressed, take the prozac....so what, that does not take the pain away...it makes me not cry sometimes.....I just want it all to go away!...... :( :( :(

deleted_user 04/10/2011

My dr and my bf want me to stay on couch arrest as much as possible but I am dieing here I need to be out even if only short walks at the park or setting on the porch I feel like a painter who lost his sight it sucks. I am not an overly active person but I am not this person who lives onthe couch but my bf calls it couch arrest

deleted_user 04/10/2011

i have such a loss for words, i get a word and it is gone. I am a victims advocate and that is bad in my job when i am arguing with an Officer, Judge or Magistrate. Is that part of it too?? I makes me cry when i have it happen. is that part of it??

deleted_user 04/10/2011

We are left behind the healthy people I am just so tired, can't work, my bf worries about me so much it is hard for him to run his companies life just sucks with every pain i feel like its happening all over again, does it ever end??? Even when it does Meechelle

deleted_user 04/11/2011

I know it is hard to be active and full of life one day and be a zombie the next. I am so lucky to have such wonderful BF he lets me sleep, whine, cry, be drepressed just be a girl. He faught menegitits in OCT and is still fighting it the long last effects are out rageous. I dont smoke, do drugs, drink, rob banks, steal old ladies pension checks I work 40 plus hours a week at a carrer I love as does my BF and here we are in limbl I want to travel, we have plans but this kinks them. Meechelle

AmyHar 04/11/2011

I had a DVT 18 years ago and fully recovered. With the recent return of the DVT and multiple bilatteral PE's I felt like I had been robbed of all the gains I had made. I don't understand why you body is responding the way it is, but we are all very different. It is hard not to get depressed, but I am just trying to take it one day at a time.

Currently, the humidity is terrible at home and I am really struggling with SOB. So I'm planning on taking it easy today and not push too hard. Like you I love being active, so this is a lesson in patience. God Bless You.

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