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.

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Lungs & Respiration
/ Pulmonary Embolism Support Group

Never ENDING !!!

brittneyb
brittneyb

Hello everyone, 


Trying to make this as short as possible. 


I was diagnosed with bi-lateral multiple pulmonary emboli in 2016. At only 22 years old right before my 23rd birthday. 


The clots on my left side left permanent scar tissue that KILLS me when the area flares up. 


I have had so many problems since my clots my body literally feels like it hates me. 


I try and justify that I’m lucky to even be alive as we all are but the constant tiredness and pain is just getting to be incredibly irritating. 


I go for cat scans and MRIs to see what is going on inside but then I have to worry about the radiation.... I’m on medication for chronic pain, tachardydia, inhalers, Eliqius ( for life), anxiety medication and it seems like every other day I’m having a new isssue rise or restart. 


For being 25, there’s no one I can talk to that really understands. They think oh you had clots they’re gone but no it’s so much more than that. Doctors look at me like I’m a miracle to be here but they tell me it could be worse... or tell me I’m lucky to be alive. 


Long story short, has anyone else dealt with numerous issues after having clots ? Or have infarction (scaring of the lung tissue) 


Thank you for reading my story. 

rmb
rmb
I have an infraction but no serious issues affecting my quality of life from it at this point.

When you see your doc about what’s going on, what does your doc say? Does the anxiety amplify your symptoms?

Sorry you are still struggling.
ECK
ECK
Oh yes , I had multiple clots on my right side a year ago ,left me with a pulmonary wedge infarct ( like muscle damage from a heart attack but in the lung) . Was on blood thinners for 6 months , came off them and 3 weeks later thru bilateral clots to both lungs and a clot to my left leg . . First of all , I’m a nurse , so don’t worry about the radiation , just put a lead apron on across the pubic , uterus area . I felt like crap for almost a year , weight gain , severe shortness of breath , chest pain and pressure , heart beating too fast . Extreme fatigue . It’s been a year and I’m finally starting to feel normal again . I’m going to pulmonary rehab which has helped a lot and walking down the street for as far as I can . If it’s one house so be it . You will eventually start feeling better , I promise but it is slow going . I’m 62 yrs old .
Kassysteiger
Kassysteiger
I am 20 and can totally relate. I was diagnosed with multiple clots in my lungs in February. Every time I go to the doctors I come home with a new diagnosis and medication. I also am very worried about the radiation because I have had a scare every month that more clots are in my lungs and the doctors keep sending me For more CT scans. I have no clotting disorders and am also a lifer at the age of 20. I feel like an old women and can’t do the things I want. If you ever want to talk send me a message! It’s nice knowing you aren’t alone and someone similar in age can relate. Good luck !
brittneyb
brittneyb
Thank you all for your responses !!! It turns out the horrific pain ended up being pneumonia ... in my bad lung in June !? I hope you all do start feeling better... and if anyone ever needs to chat please feel free to talk to me. It’s so helpful to know I’m not the only one going through the pain. I was hoping by now I’d feel some relief but many of my doctors have told me that I will have flare ups. Some don’t understand why but I have them regardless.... I’ve gone to the “best of the best” pulmonologist in NYC ... I’ve gone to 2 others and one actually told me I was too complicated to treat and when I went to urgent care they didn’t even want to be responsible and sent me to the hospital !! Which I don’t blame them haha but still... not the best feeling in the world but I do appreciate he honesty. You are all inspiring to me RMB, ECK & Kassy
Kitttkat
Kitttkat
I am newly diagnosed. I have a saddle PE in my pulmonary artery and a bunch more through out my lungs. I have infarction of part of my left lung and of 1/3 of my spleen. I have patent foramen ovale, one of my blood clots went backwards through my heart and killed part of my spleen. I'm 35. I have pain where infarction happened, more a dull constant pain now than the searing pain it was. I was also told they were surprised I was alive as well. My clot is so big that the artery streatched bigger to allow blood flow. My heart also hurts from time to time. They tell me eventually it will go away but 6 months to 2 years to who knows how long after that. My dad says when you have something like this happen, you are jus so much more in tune with what is happening in your chest than you ever where before. (40+ year anesthesia nurse.)
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