On August 1st of this year I started having chest pain. It was the beginning of what has become a months long journey of trying to get a diagnosis for my heart issue.
Twice in as many months, I have had a rare condition called Pericarditis. It's an inflammation of the lining of the heart, it causes fluid to build up that makes it harder for my heart to function properly. It's very rare, only about 200,000 cases per year in the US and I've had it twice since August. So far, no one knows why.
My first bout of Pericarditis happened in August. I was admitted to the hospital with chest pain—an echocardiogram showed I had fluid on my heart and lungs. I was treated with a powerful NSAID and sent home. It took a month to get my strength and energy back and a second echo showed the inflammation and fluid was completely gone. My cardiologist said it was likely a one time occurance due to a virus.
Unfortunately a month after the first bout, I began having extreme GI issues. I was experiencing terrible heart burn, my stomach was so bloated I couldn't eat anything without getting sick. My doctor ordered a CT scan thinking I might be having gallbladder issues. The CT showed almost every organ in my body was inflammed and I once again had fluid on my heart, including some thickening of the pericardium and fluid on my lungs. I was again admitted to the hospital.
This time I had so much fluid on my heart that it seeped into my lungs, partially collapsing one. The fluid then got into my bloodstream causing widespread inflammation, it even managed to give me a UTI. I was in pretty bad shape and spent three more days in the hospital on fluids and high doses of antibiotics.
Even after that stay, no one knows why this is happening. I'm currently on a long term treatment for recurrent pericarditis and seeing a Rheumatologist to rule out any auto-immune diseases as the cause.
These two back-to-back stays have managed to create a large financial burden for me and my family. Even though we have insurance the costs of these hospital stays alone exceeds $8,000. That doesn't include copays everytime I've had to go see my primary care for follow ups, separate bills I've received from doctors who have seen me in the hospital, or the imaging I've had done.
While I'm fortunate to have insurance, these costs are beyond what I can reasonably afford and there is a likelihood that I will end up having future bouts of Pericarditis if a cause cannot be found.
With the holidays around the corner, any help would be greatly appreciated. More than anything I would love to be lifted of this burden so I can focus on my health.
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- Stuart Johnson
- Cobble Hill
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