28 yrs old with BAV & Severe AR

[Deidra]

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.

 

[Deidra]

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

 

[Nesphito]

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.

 

[Deidra]

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.

 

[pellicle]

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 I felt that way when I was 10, but when I was having my second at 28 I was already used to it.

¯\_(ツ)_/¯

 

[Deidra]

Hey folks, just a little update: I had some scans late Janaury and based on those I have a referral to cardiac surgery. My consult is February 22nd glad things are moving along quickly.

 

[Deidra]

Another update! I met the surgeon yesterday, Dr. Bhamidipati at OHSU will be doing it. He was very personable and friendly and immediately could tell I had done my homework. I said I wanted a mechanical valve with a root replacement, so we looked at my scans together and he agreed and said we'd do that. The surgery will be in April on a Monday, but they'll call me with the exact details later because the scheduling is complicated.

The interesting thing was that he showed me my CT scan and my aortic root was dilated asymmetrically. The echos had all measured it at 4.2cm, but the CT showed it at 4.4cm x 5cm!! It's dilated much more on the side-to-side axis, so I'm really glad we caught that and I'm going to get it fixed. Other than that, the regurgitation is still severe, my left ventricle is still mildly dilated with no change, and other than that things are pretty normal.

He described me as a "vanilla" patient to the PAs in the room because I don't have any other conditions and haven't had heart surgery before, so he kinda ran down all the surgical options to the PAs because they could do whatever procedure on me with minimal risk. He agreed that the Ross wouldn't be ideal because I'm 28 and in my case you have to be thinking out to 70+ years old, and it would guarantee at least one re-op somewhere in that timeline. And he mentioned that since I'm amenable to a mechanical valve and warfarin, that's definitely the best option.

Thanks again for reading and sharing your stories everyone! I am feeling very calm and excited to get this fixed and start the recovery process. I don't think I'd be so at peace with it if I hadn't read all of your experiences here. My partner will be around to hang out with me at the hospital and help me out once I'm home.

 

[Chuck C]

Thanks for the update Deidra and glad to hear that they have you on the books!

he echos had all measured it at 4.2cm, but the CT showed it at 4.4cm x 5cm!! It's dilated much more on the side-to-side axis, so I'm really glad we caught that and I'm going to get it fixed

That is great news. Probably the biggest reason why those with a mechanical valve need a reop is due to aortic aneurysm. So, by getting the Bentall on the first go your chances for ever needing a reop will be very low.

He described me as a "vanilla" patient to the PAs in the room because I don't have any other conditions

In this situation, that is exactly what you want to hear. Nothing special, just plain old boring vanilla- something they've seen a thousand times. There are times you may want people to tell you that you're unique. This is not one of those times.

Wishing you all the best with your procedure.

 

[Deidra]

Chuck thank you so much! I agree on all points, super glad to be getting the 2-in-1 now.

Also another piece of good news: they measured my EF at 63% on the echo a few weeks ago. Huge relief because about 9 months ago I got an echo that measured it at 54% and that was what kicked off the closer monitoring for surgery soon. I was worried I had waited too long for the surgery and maybe caused some loss of function but it seems like its doing great.

 

[pellicle]

He described me as a "vanilla" patient to the PAs in the room because I don't have any other conditions and haven't had heart surgery before,

perfect.

Everyone loves Vanilla!! You should too

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you don't want to hear is "spicy korean with afterburn"


;-)

 

[Deidra]

Another update: I will be having my surgery on Friday, May 3rd! (Notably not a Monday or in April but whatever, I'll take what I can get.)

I'm taking 4 weeks off from my job (I work from home and at a desk so the surgeon said I should be able to go back in 4 weeks), and the leave is protected thankfully. My coworkers have been very supportive and helpful.

I just wrapped up my last of FOUR dental appointments that needed to get done before the surgery, and I have my pre-surgery medical appointment on April 11th thanks for reading everyone, hope you're all doing well.

 

[Chuck C]

That's great news! Glad that you've got a date to get things fixed.

Best of luck with your procedure Deidra and we'll see you on the other side!