24 year old with v02 max 53%
Blood clots in 2020. Can’t breathe the same since. Extreme shortness of breath but perfect 02 stat. In horrible pain in my heart, upper sides, liver/kidney/ spleen area. Had 2 echos, many CT’s of the chest, vq scans, which all come back fine. I did have a cardio bicycle test that was abnormal with vo2 max 53% predicted. I had an abnormal 6 minute walk as well but that’s all. They then did a cardiac mri & it was normal. My blood pressure is all over the place all the time. I am in a horrible amount of pain. I’ve seen 3 pulmonologist, 2 cardiologist & have 0 answers for the way I feel & breathe. They just reassure me I’m fine & I’m absolutely not. This is not normal for a human to feel this way. How someone breathes in & out there is something wrong there & I am in pain. This is constant. It doesn’t go away. My liver hurts so much. I had my gallbladder removed in 2020 thinking it was that. It’s only gotten worse there & in my side. It feels like something is behind my heart I can feel it stabbing me. It feels like so much pressure there and in my sides when i breathe. I have 2 kids, cry everyday & have a loss of hope. Mayo Clinic doesn’t take my insurance and im left to feel like this. Does anyone else out there have the same problem. All I want is to live. No human being should ever have to feel this way. I just want to breathe & have no pain. It’s been so long. I just want help. I’m tired of being turned away & told I don’t know. My symptoms are very much real. I feel this and breathe like this day in & day out. I truly think I’m dying… can anyone provide any help at all? Please someone out there here me. Help me. I’m begging you.
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Hi @shelbycarter100, I can imagine that you are very anxious and just want to know what is going on. It sounds like you want the type of multi-disciplinary care that Mayo Clinic offers, but your insurance prohibits you being able to go to Mayo. I might suggest looking into the Mayo Clinic Care Network.
Hospitals across the nation (and the world) who are Network members have special access to Mayo Clinic's clinical, education and research knowledge and expertise. This means you can access to Mayo expertise closer to home. See if there is a Mayo Network member in your state.
– Mayo Clinic Care Network Members: https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
I'd also like to introduce you to @gabrielm who started this discussion. I think you may find some answers by reading his journey and responses. Like you Gabriel's lung issues started young and he also has a young family.
– Mysterious shortness of breath: What has helped you? https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/
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.
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.