28 yrs old with BAV & Severe AR

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Could you please tell what are those pills? Your profile info says only losartan.

Sure. Losartan is the only pill I take that's prescribed by a cardiologist, for controlling blood pressure but also because it has some evidence in reducing the speed of dilation in the aorta in Marfan patients (and thus potentially some BAV patients).

I also take Topiramate for migraines and Eulexin for endocrine-related reasons, as well as a magnesium and vitamin d supplement signed off by my GP.
 
Hi Deidra, welcome to the forum. Dr. Starr, along with Lowell Edwards (electrical engineer) designed and built the first commercially successful mechanical heart valve in 1960. It was implanted into a young woman (33) who died 10 hours post-surgery from surgical complications. The second recipient of the valve, Philip Admunson, lived 15 years and died after a fall from a ladder while painting his home. I have one of those first generation Starr-Edwards aortic valves that was implanted in me on August 16, 1967, that is still ticking after 56+ years....and, at age 88, I can't say the same about the rest of me.

Thank you! It's really incredible to me how effective that first generation of mechanical valves was for such a new technology. I'm glad your valve is still doing great :)
 
Hey everyone!

I wanted to thank you for being on this forum and express my gratitude for its existence. Reading through everyone's experiences & thoughts here has been very informative and comforting.

I'm 28 years old, lightly-moderately active, not/minimally symptomatic with a BAV, severe AR and a mildly dilated aortic root (4.2cm, I'm 6'2"). It's been under surveillance since I was a teenager, skipped a few years, found the dilation and moderate-severe regurgitation when I was 24. Root has stayed the same, regurgitation was up to severe on last check and EF was 54%, from an average of 58% over the past few years.

I met my new cardiologist at OHSU in Oregon on Monday and she was very kind. We've scheduled an echo and a cardiac CT and if things look any worse than the prior echo we'll probably be moving forward with surgery, most likely an Aortic Valve Replacement with potential Aortic Root Replacement/Remodeling. There is an outside chance of a repair, but I may have to seek a second opinion from a center with lots of BAV repair experience on that. At the end of the day, I recognize that repair is only a chance and I would be thrilled to get a mechanical valve and hopefully call it a one-and-done. I'm diligent, very invested in my health, and have a science background, so I am eager to get to INR self-managing if/when I end up getting a mechanical valve. (Thank you to pellicle and everyone else here who has provided invaluable info on this particular topic).

I was warned that my (likely) surgeons are very eager about the Ross procedure, but my cardiologist was very supportive of my self-advocacy and choice of valve. I don't see the benefit of turning one sick valve into two and doing a more complicated surgery just to POTENTIALLY push any reops 15-20 years down the line in an ideal circumstance, which is much less likely given that from what I've read having severe AR and a dilated annulus predisposes Ross procedures to early reop. If I can get a chance to do a one-and-done, I'm going to take it. The newer data about bleeding/TE risks with optimal INR self-management for mechanical valves is very compelling and reassuring.

I feel good about where I'm at and my chances at having a long and happy life. I recognize that I'm in a very good position in terms of pre-operative risk, being a healthy 28 year old with no significant health issues other than the valve/aortopathy. I've had a lot of time to think over everything and emotionally and mentally prepare myself. Sure, I'm anxious, but I'm also excited to get this over with and start my recovery, and so grateful that this treatment option even exists at all, and that I have access to it. I know my life has changed and will never be "back to normal", but my life hasn't exactly been normal up to now so I'm not broken up about that.

Thanks to everyone again for reading and sharing your thoughts on this forum :)
Nice to see someone closer to my age. I feel Ike every time I’m at the cardiologist it’s full of older people.

I think you and a few people in this thread convinced me to look into mechanical valves more. I was worried about longevity as well as using blood thinners.

Good luck with your surgery! You’re making me feel more comfortable with my upcoming surgery. So thank you for that.
 
Nice to see someone closer to my age. I feel Ike every time I’m at the cardiologist it’s full of older people.

I think you and a few people in this thread convinced me to look into mechanical valves more. I was worried about longevity as well as using blood thinners.

Good luck with your surgery! You’re making me feel more comfortable with my upcoming surgery. So thank you for that.

Hey! Yeah absolutely, I'm usually the only person in their 20s or 30s when I go to the office heh. It's nice to talk to other people who have/are going through this in this part of their life!

I'm glad to hear that, I think mechanical valves make a lot of sense for younger patients. Of course it's up to everyone to decide for themselves. From my perspective, checking my INR every week is a very small price to pay for a good shot at never needing another surgery for this problem again. To me, checking INR, some ticking and a slightly higher bleeding risk than usual is nothing compared to guaranteeing myself multiple open heart surgeries down the line. I'd rather leave my 2nd and 3rd heart surgeries open for something else or something unexpected, rather than planning on doing multiple and then potentially still needing another one for CABG or whatever.

Thank you! Good luck with your journey and surgery too. I'm glad to hear that I could help, and I wish you a swift and uneventful recovery.
 
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