Sue 's Guestbook

Sue Lee  Hi Matthew. We are still struggling with it. He feels fine most of the time and does recreational sport without issue. But he’s still on a low dose of naproxen and colchicine. We tried to wean 6 months ago and he had a tiny flare up on chest pain with EKG changes. We are going to try and wean again in a few weeks. Thanks for checking in. I’ve been thinking about you. I’m glad you’re over the hurdle. Are you now off the colchicine and anti inflammatories? 

Matthew Malooly  Aw sorry to hear that!  But I'm glad he's back to doing some things!  Yes I've been off of colchicine and NSAIDs since last fall.  I never had EKG changes with mine, but it seems like my biggest warning symptom during periods of inflammation (when I wasn't in a full flare) was days at a time of palpitations, dozens per hour, very difficult to endure (feeling like a kick in the gut).  Last week I had it for the first time in almost a year.  I took it easy, had some aspirin in the AM, and I'm back to exercising without symptoms.  So it does seem like it's not really an on/off switch... just a long journey that requires you to pay attention to your body in ways most of us aren't used to.

Sue Lee  Thanks for the update. Did they do an EKG? After the first episode, our EKG changes were slight and he felt better within days after going back on naproxen and colchicine. His symptoms were the pain in back of shoulder and feeling off, plus usually elevated white blood count and perhaps a fever in the days preceding the shoulder pain. Fortunately staying vigilant and acting fast has kept it under control. I’m praying 3rd time lucky on weaning the meds. 🙏🙏🙏

Matthew Malooly  yeah they did an EKG, there was some S-T segment inversion but I think that's very random and non-specific.  I think what they're usually looking for is evidence of cardiac strain - if the effusion is big enough it can restrict the heart movement, and of course tamponade is bad.  So it doesn't look like I was close to that.  It sounds like we pretty much had the same exact sort of severity.  My troponin was elevated too (which is a marker of non-specific cardiac injury that's typically used to evaluate for a heart attack).  When it's high, they do a repeat in an hour to make sure it isn't increasing.  Mine were elevated but stable so a very non-specific finding - but another part of the puzzle that ultimately lead to me diagnosing myself on behalf of my cardiologist...

Sue Lee  Much appreciated Barry. It’s great hearing from people that had a mechanical valve at a young age and remained active, healthy and happy 

Barry Brasseaux  You are welcome.  I am sure whatever way you both decide he will be just fine and have a very successful recovery.