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24 year old with v02 max 53%

Lung Health | Last Active: Sep 24, 2022 | Replies (3)

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@gabrielm

Hi @shelbycarter100, Colleen introduced me to you so I'd like to ask you are doing today and if you're still experiencing the same severity of symptoms.

How were the blood clots treated? Do you know what is causing your pain, such as a certain event or did it just come on mysteriously?

I also wanted to encourage you even if a little, to assure you that I don't believe you're dying. When we're going through our symptoms, it can feel very acute and like we'll never get through it. I do truly believe you will get through this and your body knows how to adjust itself over time. But of course, I'd like to help however I can- like you, I have a young children and have to do what I can to improve my own symptoms so I can be present to them.

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Replies to "Hi @shelbycarter100, Colleen introduced me to you so I'd like to ask you are doing today..."

I am getting worse and worse. I was treated on eliquis for 6months. I was never admitted at the hospital. 3 weeks after blood clots I got a pain in my heart & my liver & my breath was really hot, I couldn’t breathe the same. Since that day 2 1/5 years ago it has only progressed. I’m not getting help from anyone. I’m just left to suffer like this without a diagnosis. My doctors tell me it’s not PH but I haven’t had a right heart cath. Other than that I don’t know what else it could be. He knows the cpet is abnormal for cardiac disfunction & a low v02 max. All he did was check my mitochondria. I write him often in the online portal and he just tells me I’m sorry & that my vitals are normal. I have been in his care since January & have only progressed. He seems to not take me seriously at all. My heart hurts so much but cardiology has dismissed me completely after the mri. He’s wrong and I know he is. I can feel it when I’m breathing in & out. The pain is a lot not only in my heart but all around my lungs & organs there. I wrote my cardiologist & begged him to help me. He’s sending me to another one & the pulmonologist is sending me to the undiagnosed clinic at Vanderbilt but they can choose to deny my case. I’ve been breathing like this for almost 3 years. I can’t even walk the store anymore I feel like fainting. Every breath hurts in and out. I had my primary care Dr refer me to Mayo Clinic through charity care the other day. I pray they accept my case. I really really need help. This is just not normal. I’m a mom of 2 boys. They need their mama. I’ve done everything I can to get help over the years. I just get an im sorry or I don’t know. This is not fair to me. Nobody should have to suffer like this.