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Looking for others with Pulmonary embolisms
Lung Health | Last Active: Apr 8 9:47pm | Replies (78)Comment receiving replies
Sorry you’re feeling so bad. Were you referred to a pulmonologist? I had a massive saddle pulmonary embolism in July 2019 & spent a week in the hospital. The saddle pe also put me in congestive heart failure. My care team told my family they didn’t normally see anyone survive what I did as they were normally in the morgue. When I was discharged, I was sent home with prescription for xarelto & a referral to see my pcp, my pulmonologist & a cardiologist. I’ve had chest pains & shortness of breath since. My pulmonologist ordered a pulmonary function test but after 2020, that was delayed due to Covid. However, my pulmonologist had prescribed an inhaler. After I was able to have the PFT, I was diagnosed with moderate persistent asthma. I still have a piece of the blood clot in my left lung that never dissolved but has remained stable. My cardiologist has put me on meds to reduce the chest pain but I still have some chest pain. My cardiologist recently did an angiogram ct which was ok. I see my pcp 2x a year & right now due to asthma issues, I’ve been seeing my pulmonologist every 3 months but normally see him every 6 months - just depending on how I’m doing. I hope this helps you and hope you can find a good pulmonologist & cardiologist that can figure out how best to treat you. Prayers for you & your family.
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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.