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.
I am so glad to have found this site!
On March 1st, I was rushed to the hospital and luckily, quicky diagnosed with massive PE's. By the time I got there, I was blue and in right heart failure. They gave me TPA which from what I understand, is only used in extreme situations. I was released from the hospital 8 days later on coumadin and lovenox. On March 15th, I went back in via ambulance due to the onset of symptoms again, though not nearly as bad as the first time. Really it was just feeling faint and some SOB. They found a small clot in another area of my lung which they think was possibly a piece of the original clots. The good news is that my legs were clear and an echo showed that my heart had returned to normal already! My INR was still not regulated, so they increased the coumadin to 10, and lovenox to 120, and I came home Thursday night.
They have not as of yet determined what caused this. Some blood work came back borderline positive (anticardiolipin and some chromosome test) but it is all questionable. I was fairly inactive prior to this, for about a year or so due to peripheal neuropathy, and I am embarrassed to admit, I am a smoker. I am even more embarrassed to admit that I am having a hard time quitting despite the circumstances. Am I the only one???
Since coming home, I am making sure to get up and walk around often, and have started taking short walks. Every little pain I get though I am paranoid that it is another PE and what if I am not so lucky this time? I never noticed any symptoms with the initial clots.... I always have pains in my legs, again, due to the neuropathy, so never thought anything of it. And the severe symptoms came on so suddenly that I am afraid.
I don't want to live my life totally paranoid and fearful all the time, but it is all very overwhelming. I don't know what the chances are of having anothe PE while on coumadin, but I am afraid right now to ever come off it!!
Thanks so much for letting me vent s bit!!
On March 1st, I was rushed to the hospital and luckily, quicky diagnosed with massive PE's. By the time I got there, I was blue and in right heart failure. They gave me TPA which from what I understand, is only used in extreme situations. I was released from the hospital 8 days later on coumadin and lovenox. On March 15th, I went back in via ambulance due to the onset of symptoms again, though not nearly as bad as the first time. Really it was just feeling faint and some SOB. They found a small clot in another area of my lung which they think was possibly a piece of the original clots. The good news is that my legs were clear and an echo showed that my heart had returned to normal already! My INR was still not regulated, so they increased the coumadin to 10, and lovenox to 120, and I came home Thursday night.
They have not as of yet determined what caused this. Some blood work came back borderline positive (anticardiolipin and some chromosome test) but it is all questionable. I was fairly inactive prior to this, for about a year or so due to peripheal neuropathy, and I am embarrassed to admit, I am a smoker. I am even more embarrassed to admit that I am having a hard time quitting despite the circumstances. Am I the only one???
Since coming home, I am making sure to get up and walk around often, and have started taking short walks. Every little pain I get though I am paranoid that it is another PE and what if I am not so lucky this time? I never noticed any symptoms with the initial clots.... I always have pains in my legs, again, due to the neuropathy, so never thought anything of it. And the severe symptoms came on so suddenly that I am afraid.
I don't want to live my life totally paranoid and fearful all the time, but it is all very overwhelming. I don't know what the chances are of having anothe PE while on coumadin, but I am afraid right now to ever come off it!!
Thanks so much for letting me vent s bit!!
Sounds like the post-PE paranoia has hit you. Most of us have gone through the anxiety and fear you are describing. I had two DVTs (one in 2005, one in 2009) before my PEs in January of 2010 and dealt with them fairly well. The PEs, however, knocked me for a serious loop. I was terrified and anxious and unhappy for a while. It took me a long time to find a new normal and start feeling like I was getting my feet back under me. Honestly, I think the mental recovery was more challenging than the physical recovery.
Also, I think a lot of us have made return trips to the ER. I myself went back to the ER via ambulance less than 24 hours after getting out of the hospital the first time. It turned out to be anxiety ... but I still felt more comfortable getting checked out than sitting at home freaking out.
Hang in there and take things day by day. You're in the early, early stages of recovery and you have a lot of time to wrap your brain around this and decide how you're gonna tackle things. Keep us all posted! Best wishes...
Getting to the "why" part may not happen for weeks or months. Meanwhile you are doing what you can.
Don't be embarrassed about smoking. I don't smoke, but I know a lot of smokers and I hear it's hard to quit. I'm sure no one hear will lean on you like your doc and bug you about it.
I'm on coumandin too. Is your INR hard to stabilize?
From a lot of the posts I've read here, it seems like this whole mess will take ages to recover from. At least you're exercising -- that's supposed to be key. But it sure hurts, doesn't it?
Anyway, hello to everyone, and nice to meet you, Jean1014.
Yup, that is just how I feel, like this jut hit out of the blue. I am sure there were warning signs and symptoms, but I brushed them off as other things. That is part of my fear right now, that I don't trust myself to listen to my own body!
I agree with what everyone else has said, the emotional aspect of things is the hardest part to recovery.
My coumadin is not yet regulated. So far I have not gottten above 1.6, hence the lovenox injections still. But, it has only been 3 weeks. I go tomorrow morning for another blood draw so I am hoping it is up.
One thing I was not expecting was the pain you still experience afterwards. I did not realize that until my second trip to the hospital when the hematologist explained to me that the healing process does in fact hurt sometimes. Makes sense of course, but it just didn't occur to me.
I am taking it very slow with exercise. Just small walks here and there. I don't want to over do it, yet I certainly don't want to sit still either. I think that had a lot to do with developing a PE to begin with.
Nice to meet you as well!
welcome to our PE CLUB!
we are all walking miracles and heros! you are a hero too!!
look how far you have already come girl!! awesome!
:)
I am new to this site as well and this is my first post although I have been reading the dissuasions since I joined last week. My situation is almost exactly the same as yours. I was rushed to the hospital on feb 24 with massive PE's in both lungs and extreme pressure in the right ventricle. I credit the doctor that administered the TPA with saving my life. They also found a DVT in my right leg. I was in the hospital for 6 days and 4 days later back in the ER. Reading these posts help me to realize I am not alone and to take my recovery day by day.
Oh yeah, and my name is Jean too!
Jeverett....I am glad you finally posted! I am finding this site to be a great pick-me-up! Just hearing what everyone has also gone thru, the experiences, and knowing you are not alomne is so comforting. Before finding this place, I was going crazy with information overload from the web, and nothing I could truely relate to. All that information was making me even more nervous!
Some days are pretty good, and others are pretty bad. (both mentally and physically) This all is so new, and I have so many questions, but as you said, you take things one day at a time.
Like you, I smoked. And even after I got out of the hosptial after five days, I started again. i quite for awhile but then I gained some weight and panicked and went back to smoking. But today I stopped for good!
For my anxiety I was prescribed both ativan, for panic attacks which can feel very much like you are having a PE. (And that's scary) and prozac for managing axiety every day. After a few months, I went off the prozac and I was able to stop taking ativan as my anxiety decreased.
At five months, I am feeling much better. Almost back to normal and will probably feel even better after I get off the rat poison.
Hang in there. This board is a great source of comfort and information. You're going to be all right. Just take it one day at a time. And get some anxiety meds, it will help!
I am considering some anxiety meds, which i had been on before for a short time. But to keep my sanity, I think it is time to go back on them!
I have also tested positive for cardiolipin antibodies. They tested me in the hospital and also ran a test a month later. With that being said, I am now on coumadin for life. cariodlipin antibodies predisposes you to blood clots. I am 2 months out from having my PE. It is normal to be scared and nervous and frusterated, etc. The most important thing is...QUIT SMOKING. Don't just think about it, don't make excuses, just DO IT. I know how hard it is. I quit smoking 20 years ago. I did it COLD TURKEY. Was it hard - yes, did I gain weight - yes, would I do it again - YES. I honestly believe if I had continued smoking I would be dead. As it is, I have been out of the hospital for over a month and a half and I am still on oxygen. I think it was from all those years of smoking and my PE. Good luck to you and stay strong. Right now my demon is weight. Unfortunatley we need to eat to survive.