Looking for others with Pulmonary embolisms

Posted by kjcarlson @kjcarlson, May 2, 2023

Have had multiple pulmonary embolisms. Looking for others to support and be supported.

Interested in more discussions like this? Go to the Lung Health Support Group.

Have 2 blood clots one in each lung.The clot on left has blocked pulmonary artery.any exterior I get short of breath.Cant do anything stay at home because of this.

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Sorry to hear you have had multiple PEs; I had one back in 2008; I had pain in my left leg and knew something was wrong, went to urgent care and they had an ultrasound performed and found clots, so they gave me a injection of blood thinners and sent me home, told me to come back next day for another injection. I arrived and when they checked my oxygen with the finger test it was low at 60% so I was rushed to the hospital for many tests and was in ER for 7 days. I had no symptoms which was scary, no breathing issues, I felt fine. I am lucky to be alive and to have survived the night I went home after being told I had clots in my leg. Here to support you, I pray every day I never have clots again, but they did diagnose me with a change in my blood chemistry, my Factor VIII changed, and my blood now over coagulates so I am on blood thinner for life.

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There is an excellent Facebook group for people who are experiencing PEs

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@maxine50

Yes, as I have gotten older it seems that everything breaks.

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Same.

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I am really surprised that few, if any, people suffering from frequent clots, shortness of breath and chest pain have specialists that have not ordered two important tests. First is a platelet count and, if it's high, then ordering a test for the JAK2 genetic mutation (ET). This is usually followed by a Hemotologist. Second are the tests for pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH). These are rare diseases that only a doctor who specializes in them really understands. They are very serious so specialist care is essential for good results. I'm speaking from experience. I have both ET and PAH. I'm on a number of medications and am doing very well, leading a relatively active life.

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@dp77827

I am seeing radiologist for another issue today, he said your heart is on the left side. I also have pain on right side in same area & my GI doc thinks it’s from IBS, idk. I’ve had this pain ever since I had a colonoscopy a few years ago. Have you talked to your doctor about it? If not, you may want to mention. Seems as we get a little older, more things come up. Prayers & hope the pain gets better!

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Yes, as I have gotten older it seems that everything breaks.

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I am seeing radiologist for another issue today, he said your heart is on the left side. I also have pain on right side in same area & my GI doc thinks it’s from IBS, idk. I’ve had this pain ever since I had a colonoscopy a few years ago. Have you talked to your doctor about it? If not, you may want to mention. Seems as we get a little older, more things come up. Prayers & hope the pain gets better!

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@dp77827

Yes, there is acceptance here & so many have gone through what we have. It is so helpful to read other people’s journeys! God bless you!!

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Now, I'm wondering if the sharp pain that comes and goes on my rib just under my right breast is my heart? Reading this makes me nervous. Just had another pain spasm!

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@reanie65

God Bless you, @dp77827. I needed to hear that. I am with you that validation from your practitioners as well as from those experiencing the heartache from struggling with an illness, is key to healthy healing. I also admit that I am struggling right now. It’s proving to be very difficult to maintain a positive outlook when it seems like my health has taken a turn in which I do not like and am comfortable with. I come here and this place holds true feelings and expressions on real issues that we face dealing with illness and the hardships it poses with family, friends and all relationships. There is an acceptance here. Acceptance and understanding that are shared without judgement or malice. I am extremely grateful that I found a place where expression is accepted.

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Yes, there is acceptance here & so many have gone through what we have. It is so helpful to read other people’s journeys! God bless you!!

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God Bless you, @dp77827. I needed to hear that. I am with you that validation from your practitioners as well as from those experiencing the heartache from struggling with an illness, is key to healthy healing. I also admit that I am struggling right now. It’s proving to be very difficult to maintain a positive outlook when it seems like my health has taken a turn in which I do not like and am comfortable with. I come here and this place holds true feelings and expressions on real issues that we face dealing with illness and the hardships it poses with family, friends and all relationships. There is an acceptance here. Acceptance and understanding that are shared without judgement or malice. I am extremely grateful that I found a place where expression is accepted.

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