TJM Posted March 24, 2021 Share Posted March 24, 2021 Anybody I have not seen many posts regarding pulmonary embolisms I had one some time last fall that I am confident explained my step backwards. I definitely improved after going on blood thinners. Unfortunately I think I had another episode last week. SOB, erratic heart rate, lower O2 saturation, night sweats etc. Very similar to last fall. I am in contact with my pulmonologist, whose backup was pretty concerned yesterday. I did considered going to the ER but decided against it. A Seattle ER on a Saturday night with doctors who are not up to speed with my history stressed me out more than relaxing at my buddies house and hoping for improvement. Luckily it did slowly improve (and continues to improve). In addition it looks like the treatment is blood thinners..which I already take. My working theory is the blood thinner did its job in my lung and it is resolving itself as time goes on. Still a worrying thought as PE's can cause a quick death. My question is, has anyone gone thru this? Any advice? I am waiting for a second response from my pulmonologist and will absolutely follow her lead (she is the most capable doctor on my "team") Appreciate whatever info y'all have. Peace Tom Link to comment Share on other sites More sharing options...
LexieCat Posted March 24, 2021 Share Posted March 24, 2021 No experience with PE, fortunately. Hope you hear from your pulmonologist soon. Keep us posted. Link to comment Share on other sites More sharing options...
Judy M2 Posted March 24, 2021 Share Posted March 24, 2021 All I know is that PE is not something to mess with. Luckily you're already on blood thinners, but you may get switched to a different one. You should be characterizing your condition in the call to your pulmonologist as URGENT. Link to comment Share on other sites More sharing options...
TJM Posted March 24, 2021 Author Share Posted March 24, 2021 If I say urgent they say hospital. I'm feeling much better and have the O2 thing that also gives HR...so I can monitor it. Last check resting heart beat was 83.....20 BPM less than Monday. But I am fully aware I am playing with fire and be checked within 24 hours regardless. If I dont hear back soon I will call. I think my pulmonologist is pulling a night shift. Peace Tom Link to comment Share on other sites More sharing options...
Sandy N Posted March 27, 2021 Share Posted March 27, 2021 Tom, I hope you are feeling better. And I also hope that the pulmonologist can get to the bottom of this for you. Please keep us posted! Link to comment Share on other sites More sharing options...
TJM Posted March 27, 2021 Author Share Posted March 27, 2021 Quick update. My pulmonologist did not think it was another embolism. So I'm being referred to a heart guy. They put me on beta blockers for the rapid heart beat. Boy...they did the trick, but I need to get use to how they make me feel. I'll put this down as a good thing even tho I have no clue of the cause. I do feel better about having a normal heart rate again. Peace Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted March 27, 2021 Share Posted March 27, 2021 Tom, glad it's not a PE. Just FYI, if they can't get your heart rate or blood pressure under control with meds, they may suggest a pacemaker. It's very effective and the procedure is tolerable. Several of my family members have them. Good luck with the beta blockers. Link to comment Share on other sites More sharing options...
LexieCat Posted March 27, 2021 Share Posted March 27, 2021 Yeah, my dad had a pacemaker put in after a massive heart attack and bypass surgery. He lived another 30 years or so with no further heart problems. Link to comment Share on other sites More sharing options...
Lisa Haines Posted March 28, 2021 Share Posted March 28, 2021 I learned I had a Pulmonary Embolism while going through testing for my brain tumor (which was how I first learned I had Lung Cancer back in March of 2015). I had absolutely no symptoms or warning and it was a total shock and I was so lucky it had not caused me any damage. It was found when they did my very first Chest CT Scan to look for lung tumors. At the time I was already in the Hospital because of the brain tumor and they immediately put me on IV Heparin. When I was discharged a week later I was put on twice daily Lovenox Injections and then later that year switched to Xarelto which I will now be on forever. I have been told that PE's can be fairly common in Lung Cancer and once you have had once you risks is higher of having another. Ironically, one of the gals who Zooms with us each week on the LUNGevity Virtual Zooms was complaining to Shortness of breath last Wednesday which was very new for her (no pain) and she was also on antibiotics and did call her doc, but was told it was likely a side effect from her chemo treatments and the antibiotics. Luckily she had a chest CT scan last Friday which found she has a rather large PE, she was on Zoom with us Friday when the report from her scans was posted to her portal and she read it to use and we ALL immediatley told her to get off, and go to the closest ER. She took that advise ( she had already placed a call to her Onc, but had not heard back), Thankfully she went right in and she ended up being admitted put on IV Heparin and later that night had a surgical procedure to remove the clots which were very large and were putting her heart under stress. She is SO lucky and thankful she went in and is now on the road to recovery, but it was SO scary to know that those were there and IF not for the CT Scan that day, she could have ended up in serious condition. Anytime there is ANY question of a PE or clots in the legs, PLEASE seek emergency/urgent care -- clots are NOT something that can wait! Best wishes... Lisa Link to comment Share on other sites More sharing options...
Tom Galli Posted March 29, 2021 Share Posted March 29, 2021 Lisa, Well said! Stay the course. Tom Link to comment Share on other sites More sharing options...
LouT Posted April 2, 2021 Share Posted April 2, 2021 Amen Lisa...I can share that I once thought I had the flu, my wife forced me to go to a hospital and it turned out I had Sepsis so bad I nearly died. A kidney stone had blocked my kidney causing the infection and even after it was removed it took them another 9 days to get the infection under control. I learned my lesson...PE, Chest Pains, Breathlessness, High Fever...never wait on any of them. Lou Link to comment Share on other sites More sharing options...
Judy M2 Posted April 3, 2021 Share Posted April 3, 2021 @LouT, I also had sepsis so bad I almost died when I had a perforated colon last year. It was a good thing I went to the emergency department when I did. It took me months to recover. Link to comment Share on other sites More sharing options...
Jesse L. Posted April 3, 2021 Share Posted April 3, 2021 Yeek, if anything what's posted hear certainly makes me want to be more aware of my health. I'll never even think of ignoring certain things again... Link to comment Share on other sites More sharing options...
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