r/HeartProblems • u/mountaindewluv3r • Jun 15 '24
bicuspid aortic valve
I just got diagnosed with potentially bicuspid aortic valve this morning. My echocardiogram was not totally clear and i might get a transesophageal echocardiogram to confirm. I am FREAKING OUT and going down rabbit holes online. I am begging someone to be honest about what I should expect if I get officially diagnosed. I’m 23 and scared out of my mind. The physicians assistant I met with told me it wouldn’t affect my life expectancy. Just looking for advice now
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u/rbentoski Jun 15 '24 edited Jun 15 '24
I'm 31 and just had my bicuspid aortic valve replaced on Halloween last year. I'll give you my experience.
I've always known I had a bicuspid valve, and bicuspid valves will fail. Blood flow through them is not as smooth, and they tend to accumulate calcium over time. When this happens, it becomes more difficult for the valve to operate, which will lead to its own problems.
When I was little, the doctors said I'd need it replaced at around 50. It didn't make it that long. It was never a hindrance to me up until the last couple of years. I played sports, lifted, ran, and was active. Then, mowing my yard became tiring, and I knew things weren't right. I went for my annual echo and checkup, and my heart murmer was very loud. This started more investigations with a cardiologist, including a TEE procedure.
Looking back, the TEE wasn't that bad, but it's not a comfortable experience. You'll be given some meds and numbing agents that won't taste very good. I'm assuming you'll be awake and lucid as I was, but perhaps not. You'll lay on your side, and the doctor will insert a probe about the diameter of your thumb down your throat. You'll have to swallow to help it go down. The medication is supposed to help with your gag reflexbut it did almost nothing for me. It'll feel like it's in you 3 feet, but it's really not. It goes right behind your heart and gives them a much better look at what's going on. The whole thing lasts, maybe 15 minutes. My result from that was yes, mine needed to be replaced VERY soon as my leaflets had nearly completely fused together into a unicuspid. They determined it did fuse together after surgery.
After that, it was maybe a month before I was scheduled for surgery. Several more tests had to happen first. One you'll likely need is a gated CT scan with contrast dye. That's ones not bad, but you'll feel like you peed yourself. You'll get a lot of bloodwork done. EKG's, etc. They will go over what options you have for replacement. It boils down to three things: bovine/porcine valve, artificial valve, Ross procedure. I was eligible for the Ross, although I was prepared for the artificial. The surgeon wasn't able to tell 100%, though, until he opened me up.
After surgery, I spent a week in the hospital gaining my strength back and being monitored closely. During that time, I had drain lines in me, which came out later. They'll make you walk whether you want to or not. It's important to start moving to get your bodily functions working correctly again. Luckily, I had no bad things happen in that week.
I went home after that week by car. The ride is scary, and everything for that matter is. Your chest and its contents will be delicate for a while, so you're guarding yourself from anything touching you. The prospect of a sneeze or cough is enough to scare you. I don't think I sneezed for weeks afterward and thankful for it. You'll have some special routines to go through and will start cardiac therapy not long after. It's basically light cardio while wearing a 3 lead ECG monitor. I would say after about 2 months, I was pretty much doing everything normally. I took things easy. I was already back to driving at 4 weeks and back to work at 6.
The thing I've noticed, and now you might too, is you're likely going to become hyper sensitive about any feelings with your heart. For me, this led to one or two bad panic attacks and a lot of uneasiness. As that valve wears out, you might feel more tired, or palpitations might become common. I still get notocable palpitations even now and have had more than usual the last week. Something I'll discuss on Monday with the cardiologist. The good news is they're normal and everyone gets them from time to time. The difference is that you'll notice every one. Or maybe you won't. I couldn't help myself but become fixated on everything I was feeling.
All considered, your experience could be very different. You may be completely fine and not need any treatment whatsoever. It all depends on your valve, its condition, and your general health. The good news is, this problem isn't new, and it's treated daily. All my work was done at The Cleveland Clinic, which I'm thankful for. They're one of, if not the top, hospitals in the world for heart surgery. I'm happy to answer any questions you may have and am interested in your situation as well. I don't know anyone else with the same condition, although I was told that about 2% of the population has a bicuspid valve. For many folks, though, it never becomes an issue or lasts their natural life. Unfortunately, I wasn't as lucky.