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.
Hi, my name is Sarah, and on Thursday night, let's see, that would have been March 29th, I paced the house because I couldnt breathe. This came out of NOWHERE! I finally called 911, I am not a believer of calling for help from anyone other than family, or close friends, but...
They rushed me to the ER, via wailing sirens, however all the way there, they sarcastically (or it felt like that to me) asked me question after question, was I "sure" I was having shortness of breath, and did I know "why" I was having this. I VERY near tears, frightened out of my mind, and tried to answer sensibly and clear. I got to the ER, and from approx 7:30 to approx 11am, they left me in the ER room alone other than asking me to repeat the same story I'd been telling them that on Feb 14th, I came into the same hospital because I had slipped and falled straight on my chest and the "thought" my ribs were fractured. Why was I feeling like I couldnt catch my breath, or WHY the pain was almost unbearable and why I laid there and sucked air like a fish out of water. Finally they took me down to get a cat scan after giving me a x-ray.
FINALLY after 5 hours roughly the PE came into the room and said that the doctor said what I had was a blood clot in my lung and they were admitting me. Then I laid in the bed for another 2 hours or so gasping for breathe until they could "find" a room. When I got to the room, they transferred me in and getting in the bed, I heard nothing from anyone for a bit. Then I was whisked down for a 45 minute wait in a cold hallway to get an ultrasound. I went back to my room. When I finally saw the nurse, I begged for something for the pain, and was given Percocet after I refused Morphine. My mom was allergic to Morphine and what she was allergic to, I have been allergic to! I called my sister in Jersey. I cried on the phone and told her all about it. She demanded the # to the hospital and called. She called me back and said the nurse would be down shortly and tell her the truth about the amount of pain I was in, and I needed something because the nurse wasnt "allowed" to ask if I was in pain, and I wasnt to be my usual quiet and meek self. The nurse rushed in, I hung up, and I explained thru tears how badly I hurt! She said she would contact my "hospital doctor" and get something prescribed. So probably 10 minutes later she came in with Fentanyl. She put it in the tube in my arm. It lasted all of maybe an hour. Several hours later, I was having a HORRIBLE breathing situation, couldnt catch my breath, the pain was astronimical! They rushed a xray person in who took a xray of my stomach (for why I have NO idea) and then down to the cat scan again. I had to lay flat on my back, and try to breathe anyway I could! I thought maybe my lung had collapsed or I was dying! I went back to my room where I was told that lung clots cause a lot of pain. Really? This much? Unbelievable in my opinion! They offered me a "Tylenol and a Percocet". Huh? Finally they gave me another shot of Fentanyl. Nothing really touched the pain. I lay awake all Friday night. Saturday the shift change brought Nurse Master Sargent. She had no patience really for patients it seemed. Finally she came in and gave me a shot of Toradol, which she had explained she couldnt continue to give me fentanyl because she didnt want me getting addicted to it, when the night nurse said didnt react that way. Almost with 5 minutes the pain was GONE! I slept from the moment the pain vanished till early afternoon.
Sorry this is so long. Just want the facts before I ask questions.
So I was taken down to do a echo cardiogram and that was clear. The cardiologist was the partner of my cardiologist who diagnosed me with high bp. So I felt re-assured that he would explain things of how I felt, etc. He said he was going to keep me on the Xarelto, and skip the coumadin because this was provoked by the smash to the ribs. He then left after telling me to call and make an apt to see him in a week. Nurse Ratchet came in and said the cardiologist, the hematologist and the clinic doctor were in an all out war, so dont pack my bags yet. The hematologist wanted me to stay another 5 days and be put on the drip. Are you kidding me? So the doctor of clinic came in and I stood up for myself and said, STOP this! You've had me here 48 hours and have put me thru a grueling ordeal! You've told me NOTHING about this and now you want to have me stay another 5 days when the heprin drip could have already been started? No...not now, you have run out of the "reasons why" thing have to be done! I totally trust the cardiologist. I have never seen any of you before and yet I am "supposed to trust you"? He said, well you are very heavy and the Xarelto hasnt had enough studies done that proves it will work just as well with heavy people. But if you say no, I will make it so. I said, that's what I said is no! So when he was getting his paperwork done, he "said" I could take Motrin for the pain,(but not in high quanity), but not Advil. I didnt think anything of it, because I take very few meds, because I am allergic to so many of them! Get checked out, go to the CVS...Motrin is ibuprofen too. WTF?
I still do not understand what has happened! I do not understand "how" I am supposed to be feeling! I am absolutely exhausted and getting up and walking even out to the kitchen leaves me exhausted. Why? How do I get better? How do I exercise? How do I get back to being able to getting back to work? How bad is the pain for most people?
C
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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.
You feel like garbage because your body has experienced trauma; you were only diagnosed a few days ago if I’m reading everything right. You are now recovering. So just give it some time and you will start to see some improvement. The fatigue is completely normal. Pain can be normal too. Try a heating pad. That can help with pain.
I’d also follow up with your regular doctor. Ask about exercise and being off work, if your discharge papers don’t have instructions.
My doc’s instructions to me were to start with very light exercise, to just do a little at a time and work up. I was told to go to work as soon as I felt able. I went back after two weeks of discharge; I have a desk job. It was very tiring and some days completely drained me but after a few more weeks it got easier.
It just takes time. Try to read some old posts on this forum. It might help you get a sense of what to expect, what’s normal.
You will be ok. Try to do things that help relieve the anxiety.
You are short of breath because basically you have just had a congealed ball of blood go thru your heart being shot out and hitting the delicate tissue that makes up your lungs. Thus you now are part of a group of people who have done this and are still around to tell about it.
You will find it will take time to get yourself where walking say from kitchen to the sidewalk does not leave you feeling like you are trying to breath thru water.
I found getting up and doing multiple small walks helps. By this I mean going out your front door and walk to the sidewalk or to the end of the neighbors house and back say 6 or 7 times a day. Slowly increasing the distance.
Sorry but it may take a few months to a year before you feel like yourself again. As this is known as a silent killer. I think who ever termed that phrase has never had a embolism. Even if I was not screaming my body sure was. They will also tell you that people do not feel it when this happens. Well I have to say that I think it depends on the size of the clot going thru.
For now though take it slow and build up your strength.
I have had a total of 9 so far and I will be rammed if I will let them stop me
In regards to getting scared, I find that it helps me doing a body check so I have some facts. Take my pulse, look through my symptoms and rationalize everything. The depression that comes along with it I don't know how to deal with, but ah well....
It sounds like you can expect to feel like shit for at least a couple of weeks but from the other posts it sounds like it gets better from there.
I don't know about you, but for me the main thing is not having anyone to talk to about it. No support network.