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.
Hello all. im new to this forum. Heres my story back on christmas just last year. my chest was hurting but decided since i have had chest pain before and ran to the er (i have generalized anxiety) with nothing wrong i decided to just push through. Until the next day i still had the chest pain this time it was hard to breath. Off to er i went after ekg and chest xray and the doctor telling me im young and healthy. i was sent home. about almost a week later i still had the pain and hard to breath thing going on this time it was like something is wrong it didnt feel right when i went to move around it got worst so off to er i went. After sitting in a er room for an hour an nurse came in and said hi has the dr been in she wants an xray im like no i havent seen the dr. Well off to xray after 2 hours of sitting and in pain and cant breath. come back from that test still no doctor but nurse comes back in and again say have the dr been in she wants an ekg. No i have not seen the dr. so yes i get ekg all test i found out from nurse is negative. Finally after 4 hours of being in er the dr comes in and said your young (in my 30s) healthy have you heard of heart burn im like yes but dr this is not that. I have gerd and this is totally different she said what did you eat. I said a steak sandwich she said oh yeah that will do it you have heart burn im going to discharge you. then she leaves out the room the nurse comes in 20 mins later and say did you see the dr she wants another test a ct with a contrast. Im like why she said its heart burn. nurse said the dr wanted to make sure i didnt have blood clot. I got really scared yes still cant breath and chest hurting. Off to ct with contrast finished test not more the 3mins after i get back to the er room the dr comes running in turning lights on saying im so sorry hunny your test came back positive i have to admit you. My husband and i were like positive for what she said you have a big ol blood clot in your lung its called a pulminary embolism im in shoock i am an medical asst so i know what it is im not hyperventilating and crying out like i dont know it was crazy from there on out . all these nurses and dr came in i was started on an iv blood thinner that i cant remember the name because i was only on it a short while they switched me to coumadin and lovanox i was in the hospital for a week i missed my son and home. been home for about a month now and i have to take the lovanox shot every 12 hours. Im bruised and pained all over my belly. still some chest pain here and there scared to have another. Sorry for the long story but i had to get that out. Im feeling alone and still scared about all this and kinda still angry that i went to er a week before and they didnt do the right test my doctor said they should have because of the symptoms i had. If anyone took the time to read my long story i thank you so much just looking for someone who is going through this and know what its like. THANK YOU SO SO SO MUCH IF READ THIS..... lOVE AND ROCKETS AND BE WELL.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
It's hard when you get home . There's so much to reconcile: the physical recovery, the emotional stuff, and then just trying to get back to your life. It can be overwhelming and I know for me, my anxiety went through the roof. I went to counseling for a bit starting about a month or so after getting out of the hospital, and that really help me sort things out.
This group here really was helpful to me as well; it's validation in a way.
Hang in there!
PS: Love and Rockets... the band from the 80s? Just had a flashback of sitting in my dorm room in all my skinny jeans, big shoulder pads glory.
It can be really hard to get diagnosed. I bounced through four doctor's offices in 24 hours before finally going to the ER ... and I even had a history of blood clots. Still, once you get diagnosed, it can be both relief and fear. I remember I was really in shock sitting in my hospital room. Only made one phone call (to my parents) and otherwise just sat there and watched TV -- and I didn't even change the channel, I was so numb to it all.
It can be very hard, for those first few weeks, trying to sort out what has happened (reliving it constantly in your head) and getting up tot he right dose on the coumadin and just adjusting. It is very hard and I know anxiety showed up and just smacked me across the face on a daily basis. I finally wound up doing some therapy, just to work through my emotions, and I took an anti-anxiety med for a couple of years after my PEs. The mental recovery from PEs was, in so many ways, much harder than the physical recovery.
Hang in there! Baby yourself ... it really does get better.
While in the hospital they found a leason on my liver so im seeing a specialist for that. Blood was found in my urin so im seeing a specialist for that. Had to stop my birth controll because they think that along with smoking was the cause of my PE. Also took a trip back in november so they say all that could have been a big pot of mess.
So i have to see a doctor to decide what to do for a contraceptive. Which my husbandand i decided to just weigh options and go from there so no birth control. Stopped smoking no wine on the weekend so im just all kinds of crazy.
The lovanox shots are ok i guess except for the bruises and lumps and delayed burning sensation after the shot. I feel like i am being beat up by mike tyson and it shows.
I thank you so much again for responding i was really relieved when i found this forum while searching the net on one of my many sleepless nights. Are there any one taking the lovanox shots?
They did a repeat CT at five weeks out and all my clots were gone. The pain was just healing and my poor lungs complaining about having to do too much.
As far as birth control, I didn't start anything new after going off the pill for a few months. I needed time to think about it and find an OBGyn to give me some advice. I'd seen my GP for all that stuff befor the PE but after the PE, thought it made more sense to start seeing an OBGyn. You'll get it sorted out.
I thought for sure i had gotten another PE. but all test came back fine er dr said i might be doing to much which i agree with working and had two doc appts today and rushing to get it all done before i picked my son up from school.
I feel like im going to have a break down soon if i cant get it together.
I do feel like having you guys and this forum will help me be able to work it out like you said.
It did make me worry because like you said i have not had any pain. I really wish i would have seen this. Youguys are great thanks so much. for listening to me rant on.
My husband is really supporetive and loving and attends to my every need i trully dont know what i would do without him. But its great to have someone how has been through this.
We were supposed to take a trip this weekend (we love to travel) but i changed my mind i would be a nervous wreak. 5 more months on the levonox shots hopefully i can be ok in my head by then.
Thanks @rmb & @TossNTurn you both are awesome.
So as i was reading the side effects and the drug interactions it say clear as day could cause bleeding and could cause effects in pts taking blood thinners and with blood clots. So im not really wanting to take them. i think What im going to do is call my hematologist and make sure its ok to take them.
She also gave me antianxiety meds which i of course dont wanna take. I really dont like taking pills. I just wish i could fix this and be done i know im being crazy about this and its going to be like this for a while but im scared out my mind.
As far as the anti anxiety meds, look at it this way: you now have them if you feel you need them. There are all kinds of ways to deal with anxiety. There's meds, meditation, therapy, exercise, yoga, distractions, etc. so you have choices.
I really, really fought taking anti-anxiety meds for a while. I thought I would be fine and that, once the shock wore off, I'd get myself out of the anxiety I was in after the PEs. But, I fought really hard, and 3-4 months after diagnosis, I finally started taking some anti-anxiety meds. And, truthfully, I wish I had done it a little earlier. All that energy I wasted on anxiety, I could have been using to heal and to get back to real life. The anxiety really was just holding me back. I also saw a therapist to help me work through some of it, but RMB is right that you have other options like journaling, meditation, etc. You really do have to find what's right for you ... but definitely put some time into finding something that will help you. The anxiety can take over your whole life if you let it.
I'll note also that I took the meds for about two years after my PEs, so even if you take them now, it doens' t mean you have to take them forever. I didn't even really need to take them that long, but I had a couple of surgeries in one year and figured I could use the extra emotional support.
It is like when i left the doctor appt i started haveing alll these questions come to me that i wish i had come to me while i was there. But i was so into figureing out what was wrong with me, That i forgot to ask some key question.
The doctor said i should start a journal so i went and brought one, i love to read so I just got new books, and i started painting which helps but only for the moment.
I am thinking about taking the anxiety meds only because i can't sleep. The doc is sending me for a sleep study which was in place before all this started i just havent had time to do it till now since im not working much.
Also i forgot to ask if my dosage of lovanox is to high concedering that i was only on that dosage to start with hopefully i get a call back from the hema doc and i can ask her. Again thank you both for responding and helping me through this i cant express enough how much this means to me...
I've struggled with insomnia since about 1998 and have tried meds, good sleep hygiene, sleep studies, medication, meditation, etc. I had actually gotten in totally under control through use of a meditation tape for the year before my PEs. After the PEs, my anxiety sent it spiraling totally out of control (I was scared to fall asleep because I didn't think I'd wake up). It has taken me years now to sort it out again, which has been frustrating, although I'm finally getting better. Anything you can do to nip this in the bud will be good for you down the road.
I have done very, very well with "The Love Tapes" (terrible name) from Effective Learning Systems. They have one on "Deep Relaxation" that has helped and also their insomnia tape, which has subliminal waves in the background that mimic your brain waves when you're sleeping. Those might be options for you if you're hoping to avoid meds.