Feb 21
RGordon
RGordon , Posted on SUPPORT NETWORK Blog

Sarcoidosis

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I will try and make it short. I have been dealing with this heart failure a year and a half. They found sarcoidosis in my lung. They did a pet scan and then never really told me the results. So recently I was looking at my medical records online. There it was, sarcoidosis in my heart. I was upset that they didn't tell me. I realized why they were hesitant when I looked up cardiac Sarcoidosis, which is what they call it. Prognosis 2-5 years. Prognosis is bad. I have known that it is bad. I can walk about two blocks. I was wondering if anyone out there has been diagnosed with sarcoidosis?

3 Comments
  • torresfran54
    torresfran54,

    Hi, just read your story and wanted to add my experience, or rather, my mom's experience with sarcoidosis.  She was in her early 60s when she was diagnosed with sarcoidosis in her lungs with a lung biopsy done by a lung specialist.  Since she was always short of breath, we decided to look into it and she was told that sarcoidosis usually attacks a major organ or organs and in her case, it was her lungs.  She had to get portable oxygen about 6 months after her diagnosis and lived with home oxygen and portable oxygen for over 20 years.  At first it was hard on her to get used to living with oxygen 24/7, but as time passed, it became easier for her to deal with and learned to live an almost normal life.  She passed away at the age of 82 and lived a pretty normal and happy life after she was diagnosed.  Hope this is somewhat helpful and hopeful for you.  Best of luck and don't give up.

  • 1Christina
    1Christina,

    My father had Sarcoidosis, the doctors here in Florida mis-diagnoised him, the did the PET scan and never picked up on it, they thought he had cancer or heart failure, the Saracoidosis was attacking his heart he had cardiomyopathy, his injection facture was 15-20 percent, he could barel walk, they wanted him to go on a heart transplant list.  He got scratched by a dog got a leg infection the hospital gave morphine to a heart patient and all of his organs shut down, my mom did an autopsy and found he had Sarcoidosis which was the cause of the heart failure.  My brother met someone in GA that has it and it took the doctors a very long time to diagonsis it but he he doing very well.  I heard Prognosis was 10 years, my cousin had it and lived that long and that was 17 years ago., I imagine without treatment it attacks the heart and that is whyo you cannot walk far.  Wish you the best of luck, my dad would probably be alive today if the doctors gave him the right diagnosis. 

  • Ebeth48
    Ebeth48,

    My father had cardiac sarcoidosis.  He recently passed away at the age of 84.  He had this disease for 40 years.  My advice to you is to get a consult at a university hospital with a cardiologist who specializes in cardiac sarcoidosis.  My father was diagnosed at a university hospital, but then followed with a local physician.  A lot has changed in healthcare in 40 years.  I think he survived as long as he did on prayers alone.  Fight for the healthcare you deserve.  You may have to do this the whole time or at least until you find the right physician.  Good luck to you.  

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