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Hi @estrada53! Thank you so much for your response ! I have felt incredibly isolated and feel that the information that I read is pretty dire, so I thank you for your kindness in responding 🙂 Your story sounds very intense, I am so sorry to hear about the sarcoid's progression in your heart leading to a transplant, wow. I'm not entirely sure where the sarcoidosis is in my heart. I was preliminarily diagnosed May 2019 via cat scan of my lungs, then pet scan indicated sarcoid in my heart. So far, aside from being light headed or out of breath from time to time, I appear fairly asymptomatic (maybe some fast heart beats from what the heart monitor shows but cardiologist said that it's not dangerous). I am currently not on any medication, however I was supposed to have valve repair surgery on August 6. They want to delay the surgery to try to reduce the inflammation prior to surgery to obtain a better outcome.
My questions are...do you know if it's possible for sarcoid to remain asymptomatic or does it keep going until it destroys your heart ? Presently my lung function test shows I'm at 75% capacity, so the sarcoid is doing some damage there....but I am very worried about my heart and to try and keep the disease from causing damage there. Do you know if the steroids will work ? So much more to ask, but damn it's daunting. I am remaining positive in my brain, going to continue exercise (modifying so my valve holds up until surgery)...but the steroids is gonna change my life I fear.
Replies to "Hi @estrada53! Thank you so much for your response ! I have felt incredibly isolated and..."
Hi again @craigz20. As for steroids. I was on 45-60 mg of prednisone at the beginning then weaned off of the steroids. I was also on methotrexate and later azathioprine. I was off of everything right prior to the transplant. The sarcoid had calmed down but the damage had already been done to my heart. As the granuloma developed on my ventricles, the heart had to increase in size to be able to squeeze the blood through the arteries. I had cardiomyopathy and my heart was 3 times it's normal size. I tell you this because as crazy as it seems, I am doing great now.
Let me ask...why are you afraid of the steroids given what's going on? Do you know of an alternative anti-inflammatory?
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Hi. Happy to reply. While it does seem like my story is intense, and there are other stories as well, I have been able to have a very joyful and full life and expect to for many years to come.
I asked about where they found the sarcoid in your heart because once it causes heart failure, there's really no going back. If it's in a valve or node, it could be a different outcome.
Just to add: My lungs were at 66% and now with my new heart I am up to 88%.
At the beginning I was pretty asymptomatic as well and with meds my EF ratio was between 40-45. I could have lived with that. When I went to Mayo they gave me an oxygen/carbon dioxide test and found that my major muscle groups were only getting 40% of the needed oxygen. So they knew I needed a new heart. I hope and pray you receive great medical care.
My best to you.