Struggling with my new "normal"

[Liss-x30]

Hi everyone,

I was born with a Bicuspid Aortic valve, hospital visits have always been part of my life. Two years ago at 28 years old I have my aorta replaced with a mechanical valve. My recovery was going well, until I caught covid and two weeks later was diagnosed with Pericarditis (March 2022). However since then my life has been completely torn upside down. I have been hospitalised 3 times - with November last year the worst episode with a 3 week stay in the hospital, with the lining of my heart swelling to 13mm. I have now been told I have fallen into the 1-2% of people who get recurrent flare ups.

The pain is so server when I have an episode - they last anywhere from 7-10 days. I used to be super active and now I can barely exercise without being short of breath and crushing feeling in chest. I went to the hospital last week and now need a CT scan to check that I don't have cancer as other tests have come back negative to suggest why this keeps coming back.

I just turned 30 and am struggling to adapt. I am anxious all the time, I don't feel like I am leading a young normal life and feel very isolated. Would love to hear from anyone and in particular anyone in the similar age group of how you are adapting and find life with poor heart health

Thanks Melissa