Moderate to severe aortic regurgitation

[Toffeelondon]

I had a David’s procedure in January to replace my aortic root and decision was made to preserve rather than replace my aortic valve which is bicuspid type 0. I had no stenosis and only mild regurgitation before the surgery, however I have since developed leaking from my aortic valve due to prolapse of posterior cusp.

I’m now waiting and being monitored as reoperation now would be difficult, also moderate to severe regurgitation is not a level at which intervention would normally be required.

My questions to this community are:

- does anyone out there have moderate to severe regurgitation (vena contracta 0.5-0.6cm) and how long has this held out at that level before surgery is required?

- Have you lived a normal life with this condition and exercised as normal ? I am a fit and otherwise healthy 42yo male and it is a difficult pill for me to swallow to pull back on my exercise levels (I did London marathon last year and would like to return to doing triathlons at a modest pace)

thank you for any input !

[Yumz199725]

Hi sorry just came across your post! I am 25 years old I also have bicuspid aortic valve severe aortic regurgitation and moderate stenosis and I will eventually need it replaced preserving it isn't an option for me but I can tell you that I lead a very normal life and I go to gym I do alot walking and I am a full time carer aswell so my condition hasn't gotten to the point of needing surgery yet. I don't know my actual measurements of my vena contractor but I will look out for it on my next echo results. Have you spoken to your cardiologist about your concerns?? Wish you all the best and hopefully you won't require more surgery but if you do I hope it all goes well and keep us updated on how everything goes! 😊 Have you had an echo recently or are you still waiting for results??.

[Toffeelondon in reply to Yumz199725]

Hello! Thanks so much for the reply and follow. Yes I am being monitored by the surgeon who did my op in January - I have another echo next week and a stress echo the month after that so we can assess the effect of the leaking. I have to say I am feeling ok though it is sometimes difficult to tell whether things like fatigue / minor chest pains are caused by the regurgitation or the recovery from the January surgery.

I am back running 5km but times are way off what they were before - last week I managed sub 27mins whereas pre Op I was managing sub 24mins. Same with swimming - did 1.6km open water on Saturday in 42mins and was doing before in 39mins. Again no idea if slower times now are due to leaking or the recovery from the open heart surgery.

I have just become a father for the first time so my absolute no 1 priority is to set myself up for a long healthy life to support my wife and new son

[Yumz199725 in reply to Toffeelondon]

Glad your being monitored as your surgery was quite recent. Hope your echo and stress echo go well. Keep us updated on your results of those tests. Yeah I can imagine those sensations would make you wonder if it's the leaky valve acting up or just after affects from surgery I know I would be going crazy! I think the slower times are probably a mixture of both maybe cant be easy going through surgery only find its still leaking. Ahh congrats on becoming a dad 😁😊🎉. Wish you all the best with your recovery and I really hope you don't need any more surgery.

[Etzel]

My bicuspid took 14 years to get to the point of valve replacement and I kept doing weights and cardio at the gym until Oct last year. Marathon level fit is better that I was so fingers crossed you can go longer.

[Toffeelondon in reply to Etzel]

That’s fantastic! Did you do marathon with a leaky bicuspid or a valve replacement? I did London in October while unknowingly having an aortic aneurysm. Glad I came thru unscathed !

[Etzel in reply to Toffeelondon]

I never actually ran a marathon as I have a slightly iffy knee, but 2hrs on a treadmill with medium elevation was a regular. Strangely the only thing the doctor told me to avoid was high weight leg press as apparently it puts pressure on the valves.