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 know many of us have fought with slow diagnoses, doctors that don't know much about PE recovery, surprising symptoms, and anxiety. I wonder, would it have helped YOU cope if you had been given something that said the following when you got out of the hospital? What would you add to the list?
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Dear PE survivor,
(1) Your body and mind have been traumatized and will now take a while to recover. Your recovery will probably not be in a straight progression and could take weeks, months, or even years. This is normal.
(2) You will probably have widely varying levels of pain. Some days you will feel better; some days you will feel worse. You may feel pain in places that you would not expect, and you will probably be surprised by the pain you do feel even months after diagnosis. This is normal.
(3) You will probably be tired--really tired!--for a while. The exhaustion may come on suddenly, even if you feel that you have been taking it easy and even if you have been sleeping a lot. The exhaustion may also linger for days or weeks or months. This is normal.
(4) You may be hit with surprising levels of stress and anxiety--even if you've never had anxiety before--as a result of the PEs. There are many medicines and techniques to help with this and it may take you a while to feel comfortable in your own skin again. Don't be surprised by the anxiety and don't be afraid to talk to your doctor about it. This is normal.
(5) You may have trouble sleeping for a while, but this will get better as the pain and anxiety start to fade. Time is the best healer but again, don't be afraid to talk to your doctor and ask for help. This is normal.
(6) Your medicine dosage and INR will take a while to stabilize and to get used to. Your medicine may have side effects you weren't warned about, and you will need to stick to a consistent diet. It may seem overwhelming at first, but in time you'll get it figured out. This is normal.
(7) Don't ever be afraid to call your doctor, ask questions, or go to the emergency room if you need to. People are always available to make sure that you really ARE all right. It was probably your persistance and intuition that got you diagnosed in the first place, so don't be afaid to listen to your instincts and don't beat yourself up if you're spending a lot of time talking to medical professionals. You have to do what you need to in order to feel comfortable again. ALL of this is normal.
_____________________________
Dear PE survivor,
(1) Your body and mind have been traumatized and will now take a while to recover. Your recovery will probably not be in a straight progression and could take weeks, months, or even years. This is normal.
(2) You will probably have widely varying levels of pain. Some days you will feel better; some days you will feel worse. You may feel pain in places that you would not expect, and you will probably be surprised by the pain you do feel even months after diagnosis. This is normal.
(3) You will probably be tired--really tired!--for a while. The exhaustion may come on suddenly, even if you feel that you have been taking it easy and even if you have been sleeping a lot. The exhaustion may also linger for days or weeks or months. This is normal.
(4) You may be hit with surprising levels of stress and anxiety--even if you've never had anxiety before--as a result of the PEs. There are many medicines and techniques to help with this and it may take you a while to feel comfortable in your own skin again. Don't be surprised by the anxiety and don't be afraid to talk to your doctor about it. This is normal.
(5) You may have trouble sleeping for a while, but this will get better as the pain and anxiety start to fade. Time is the best healer but again, don't be afraid to talk to your doctor and ask for help. This is normal.
(6) Your medicine dosage and INR will take a while to stabilize and to get used to. Your medicine may have side effects you weren't warned about, and you will need to stick to a consistent diet. It may seem overwhelming at first, but in time you'll get it figured out. This is normal.
(7) Don't ever be afraid to call your doctor, ask questions, or go to the emergency room if you need to. People are always available to make sure that you really ARE all right. It was probably your persistance and intuition that got you diagnosed in the first place, so don't be afaid to listen to your instincts and don't beat yourself up if you're spending a lot of time talking to medical professionals. You have to do what you need to in order to feel comfortable again. ALL of this is normal.
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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.
I hope things improve for you, and you are able to get some help with some of those problems! Some might have other causes than just the PE you already had.
I think doctors at the hospital where you're treated have no clue about post PE because for one thing, they rarely see you again, and it's their job is to treat the PE itself. So in their eyes, the fact that they were able to treat you at all is considered a success, which is true. But then once you leave the hospital, these people never see you again so they have no idea what's ahead in recovery, what you experience, the anxiety, fatigue, etc.
I think as survivors we end up teaching our PCPs about recovery and hopefully, by what they learn from us, they can help any future patients they have who are lucky to survive a PE.
One thing you may want to add is : If the cause of the clots was Not diagnosed or not concrete you may be sent for further tests as I got a appointment in for a mammogram which was totally unexpected and added to my anxiety when I called consultants secretary I was told it was routine and not to worry but that the hospital should have made me aware their may be further tests.
As said I totally agree that the hospital think they have done there job and have no idea about the trials of recovery, they certainly did not give me any aftercare, I got a discharge letter for my Gp and meds.
I have dealt with Sjogrens / Lupus for 15 yeaars probably longer.
This was a new Symptom because I have the antiphosiphild antibody.
I was really traumatized by the diagnosis because I had no clue I had a PE. The only symptom I really had that related to it was a cough.
My DVT was large and they found resisual when they did a roto roter job with TPA's & cathater.
I am fortunte that the nurse at my anti coagulation clinic has had a clot and understood what I was going through.
Thank for making his list!