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I came across this forum and thought I would see how it works. I do a couple others, but there are so many of us on those that sometimes it's hard to get a response. Anyway, I am in my early thid ties, married with one son. I was diagnosed with sarc in 2006, in my lungs then my heart. I was on prednisone and methotrexate and received a defibrillator implant. After a couple years, I seemed to be stable and so have enjoyed pretty good health since around 2009.
But now I am worse than ever. My lungs, which never caused me problems, except for their appearance on scans, are terrible. I can no longer oxygenate my body. I am on supplemental oxygen. My heart jumps from too slow to too high in seconds and my ICD registered 22 episodes of tachycardia last month. I am waiting for treatment at Royal Brompton in six weeks, but don't understand how they can keep me waiting after what they said while I was there last. I am to get IV steroids.
I get some support, have a great husband and all, but I am just so depressed I don't know what to do with my time at the moment. I have written to the hospital with some new developments with my symptoms in hope they will admit me sooner, but I'm not counting on it. I would love to hear from anybody who is struggling similarly or ah say advice. Thanks. X
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