Hi there, I'm new here but I wanted to come and introduce myself and share a bit about myself.
A few years ago, I found out I had a heart problem. Doctors reassured me that it wouldn't cause any issues at my early age but maybe in my 60s. They thought it was due to disease but little did they know, it was congenital. I was born with a rare heart defect and for it to come by itself and not with other defects is even rarer. Thankfully this little thing I have is the only defect I have. It's called supravalvular mitral ring. It's a piece of tissue that sits on top of my mitral valve. It doesn't allow blood to flow as it should so it's causing me to have a condition similar to severe mitral valve stenosis.
This little ring causes lightheadedness, problems breathing, palpitations, and eventually heart failure, which is why recently, my doctors have been talking about surgery. My doctors knew about the palpitations since they discovered I had SVT during a routine 30-day holster monitor test back in 2014. I had other symptoms but I never thought to mention them because I thought they were due to me having gained weight. So the palpitations were there for about 8 yrs but I recently saw my congenital cardiologist and mentioned the other symptoms. It turns out I also have congestive heart failure and that will make you gain weight and have the other symptoms, who knew? not me...
I had a bike stress test with an echo on a bed (weird I know) then a CPX test (cardiopulmonary exercise test) and was told I did really well but then came the call from my congenital cardiologist, and she says my tests might look well, but my symptoms say otherwise. She says I need heart surgery, OPEN HEART SURGERY. At my age? I'm only 41! I'm waiting to do a bilateral cardiac catherization next week and a preop with a million tests (echo, ekg, labs, etc) on 11/28 and then 11/30 I will have my OHS. Thankfully it's being done at Stanford so I feel confident about it but I'm super scared. I don't know what to expect. I'm really afraid of the pain and recovery. Ugh...
And if you've read this far, thank you.
Hi Yessica. I can relate to the stress you're going through with the impending open heart surgery, I was in a very similar situation and in my mid-40s when I had my last surgery to replace the aortic valve. (It all turned out well) Learning more about what to expect and hearing other people's stories with similar conditions is often very helpful and reassuring. We have a group of Young Mended Hearts in Bellingham WA who are always very supportive and you'd be welcome to join our monthly Zoom calls. Given the timing of your surgery feel free to reach out if you'd like to talk, either with me or another member of our group.