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Looking for others with Pulmonary embolisms

Lung Health | Last Active: Apr 8 9:47pm | Replies (78)

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@reanie65

I am very grateful for this site. There are some beautiful people in here. Mentally, this site helps me to know that there are others fighting this fight. Awareness in always key!🙂
I am also very sorry for your troubles. Your story as well as @beancat425 were my first to see. I just entered this site yesterday. I am challenged to make the most of this illness when I am able to read others stories. Thank all who use this site. Thank you for your honesty and willingness to share your experiences as well as thoughts. My prayers are to all.
My first pulmonary Embolism was a saddle clot (@30yrs ago) I was transferred to a cardiac hospital, 4 hrs away, after I was told I had a heart attack. No X-rays were taken. Just labs. When they began taking x-rays they had to stabilize me on the exam table. I was told that I had a clot, and the clot was huge. My skin, I was told had turned an olive color and I, of course, didn’t have a clue I was sick. No symptoms I was aware of. I had an IVC filter placed, that very same day. After that big one, I have been continuously developing them ever since then.
Medications changed, starting with the most common, Warfarin. I went through the alphabet ending with Xarelto. Still developing clots. Mostly PE’s, then about 6 yrs later, I started developing DVT’s. My IVC had to be replaced which was done at Northwestern University Hospital in Chicago 🙏🏽 a few years ago. Blessings to them, they were my Godsend.
To answer your question, I do not have a pulmonologist. I was told a few yrs back that I did not need one. I will inquire about one again today. Also, a consult was put in for me to see a cardiologist. I have not scheduled that appointment as of yet. Today hopefully. Thank you for reminding me!
I wasn’t as hopeful this morning till I read your message a few minutes ago. I came home a few hrs ago from the ER after spending a good 13 hrs there. Findings that I was not having heart attack or stroke. Well….
I am taking a turn for the better realizing the tips you gave me. I do still have things I still can do for myself.
I am reaching out to my PC and asking for a Pulmonologist and I am calling today to schedule an appointment with the Cardiology Dept. at my hospital.
Thanks again!
To all of you who read my post, please try and stay positive. Be kind to yourself. Know that I know, that this disease is not an easy one to master. Read the posts to gather insight, learn and help others. Know that you are not alone. This fight is all of our fights, as well as our families and practitioners.
Stay True.

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Replies to "I am very grateful for this site. There are some beautiful people in here. Mentally, this..."

My prayers continue for you, your family & care team. While my medication helps with the chest pain, I continue to experience it. My cardiologist says that when you survive a massive pulmonary embolism, it’s not uncommon to have this which made me feel better. Sometimes you feel like people think it’s in your head, it’s not. While I’m so grateful to be alive, I am very grateful my cardiologist acknowledged this. I was thinking it’s 4 years, things ought to be back to normal, yours was 30 years. Hang in there & be sure to advocate for the care you need !! Prayers &best wishes!!