Aortic Valve Replacement Surgery

[Crinan]

Hi I am 53 and was born with a bicuspid aortic valve. I have been monitored throughout my life and knew I would eventually need surgery. I got told last week that my valve is now critical and needs replacing soon. I waiting for a referral to a surgeon. I didn't feel like I had any symptoms until this week and now experiencing breathlessness and lightheaded. Not sure if it's symptoms or anxiety. I am terrified as my father died suddenly of a heart attack at 53 during a triatholon and was unexplained which makes me think he had a bicuspid valve also. I suppose I just want some reassurance from others in the same position.

[Yumz199725]

I was born with congenital heart disease bicuspid aortic valve I had my coarctation of the aorta repaired at a day old. I still have bicuspid valve with moderate to severe aortic regurgitation and moderate stenosis x. I will eventually need valve replacement surgery. How long have you been waiting for surgery? or still waiting to be on the list? I hope your symptoms are just anxiety related and not heart related ❤️. Wish you all the best and take care, keep us all updated hun.

[Crinan in reply to Yumz199725]

Hi thankyou for your reply. I also had coarctation of the aorta repaired at 8 years old. I only got told by my cardiologist last week that I am being referred for surgery. He couldn't indicate the wait time but I suspect now its critical which is over 100mmgh then it will be soon.

[Yumz199725 in reply to Crinan]

Woah can it get that bad didnt even know it could get to that. It's amazing you don't have any symptoms x

[Crinan in reply to Yumz199725]

Yeh surprised me. I went from 75 to 105 since October. My cardiologist can't believe I don't have symptoms but at same time that's what's worrying. Will they come on very suddenly?

[Hanibil]

Hi I was born with the same problem, in 2004 it became very serious and I had to be air lifted to hospital while skiing. I eventually had a replacement mechanical valve replacement in 2005. After being told a tissue valve would only last ten years, 19 years on I feel great my valve is working perfectly and at 68 I still ski and mountain bike. So try not to worry am sure all will be well.

[Crinan in reply to Hanibil]

Thankyou for your reply. So good to hear you are doing so well. Will keep you posted.

[Hanibil in reply to Crinan]

Please do

[Rhinos67]

Bless you. I think that you may have joined a Facebook group now too??My Dad died aged 70 after being incredibly fit all his life he had difficulty breathing and couldn't even walk across the living room. ECGs came back normal and he was told he was having panic attacks. He wasn't, he became so short of breath one day that he rang for an ambulance but died on the way to hospital. He had a bicuspid valve that was undiagnosed and that caused his death.

Fast forward 19 years and I had gone from being able to run a 10k to being breathless and dizzy after 30 seconds of running. I also "fainted" mid run and was told it was just a faint.

Unusually for me I fought my corner, knowing that something wasn't right despite the normal ECGs resulting in the Cardiologist telling me I was fine and keep running. He reluctantly agreed to do a stress test to reassure me and that was booked for about a month later. Before they did that they did a routine Echocardiogram and at that point they picked up my bicuspid aortic valve, which by that point was at the severe to crucial stage of aortic stenosis. It wasn't the news I expected or wanted to hear, and I went to pieces for the 6 months leading to surgery, during the hospital stay and for some time afterwards.

I'm now 2 and a half years post surgery.

Things didn't go quite as smoothly as they planned resulting in me needing a pacemaker and being 100% paced, but I'm one of the lucky ones. It was picked up and so got fixed and you will be too.

Reach out for help when you need it, that's one of the hardest things to do, but so necessary.

You may not be OK at the moment, but all will be OK eventually 😊

Joanne -

🥰

[Crinan in reply to Rhinos67]

Hi Joanne. Yes I have joined a group which is helping me alot. Thankyou for telling me your story. I am overwhelmed with the support in just a few hours. I have so many questions and fears. I already feel alot calmer though thanks to you all and the symptoms have calmed down so seem to be anxiety. I will keep you posted. Thanks again.Janine 🥰

[Ageingfast]

Dear Crinan

I was born bicuspid but I didn’t find out until I was 70 years old. Had a very active life with no problems.

Then, due to stenosis, I needed monitoring for five years, then it became severe and I felt unsteady, breathless etc. so it was the AVR with a non metallic valve.

Brilliant operation, fabulous staff. Long recovery, for three months, but felt improvement every couple of days. Then the golden moment when all felt well. 4 years on there is no trouble from my valve, I don’t even know it’s there.

The op is very very safe. My surgeon had better than 99% success.

Hope your journey is as good as mine

Sooty

[Craig53]

Morning same thing or similar I had surgery for same things before lam still in recovery but have no fear IAM sure like me you will feel better in the long run most people I've meet have been older than me lam 54; so just get it over with lve been waiting over 5 years had two heart attacks didn't feel anything only unwell best of luck with the operation

[andgrant1]

hi, please be assured that you will be in very safe hands and this is an incredibly successful operation, especially at your age. I am aged 57 and had surgery 12 weeks ago to replace my bicuspid aortic valve also with minimal symptoms prior so am happy to answer any questions you may have. The time prior to the operation is by far the worst in terms of understand my being anxious but I know with a positive mindset things will be fine. I wish you all the very best.

[Crinan in reply to andgrant1]

Thankyou for your reply. Hope you are doing okay? I am waiting to hear from surgeon so will definitely have more questions. Thankyou

[andgrant1 in reply to Crinan]

Hi, yes I’m doing really well thanks. Drop me a note with any questions you have as will be happy to help

[Babulivia in reply to andgrant1]

I know these posts are from 25 days ago but I just joined the group. I am in same position. Surgery scheduled for end of October to repair or replace bicuspid valve and replace Thoracic Aorta and Aortic root. Any encouragement you have would be so helpful. I'm still a little stunned at the news.

[andgrant1 in reply to Babulivia]

The worst part will be the lead up to the operation but I can honestly say you are in very safe hands. It’s a big operation for sure but a very routine one for the great surgeons and teams that perform them every day. The first weeks after will be uncomfortable largely because the breast bone takes a good while to fuse and heal which means that you’ll have to take things very gradually but you’ll have a great team helping you before you leave the hospital (I was in for 7 days) and the pain is very well managed by painkillers. If you have any specific questions please ask and I’m sure all will go well in October .

[Babulivia in reply to andgrant1]

thank you so much. I believe you!

[highburyted]

hello

I had my aortic valve replaced last year. 67 yr old, with COPD, very much overweight so classed as high risk. When I was finally called into hospital after waiting 3.5 yrs I was sucking air like a gold fish.

I too thought the very worst every single night whilst waiting for the operation.

On the day it arrived, dunno how, I was as cool as a cucumber.

The operation was successful, they did it, even I couldn’t believe it and a year later it’s working fine.

Remember, the surgeons do this like a plumber changes a tap, a painter paints a wall.

Trust them, you will be ok. I even asked a nurse to be truthful and have they lost anyone . She said she had worked on that ward for 9 yrs and the answer was No!!!

You will be ok and keep in touch with the people on here, they are brilliant and will help you get through it.

Highburyted

[Classof1988]

Plenty of reassurance from previous posts. I think there is something in the hereditary route as my grandfather had rheumatic fever (twice!) and I believe my father also had heart issues though he did not talk about them. I had rheumatic fever at age 13, which damaged my aortic valve, valve replacement at age 32 while still asymptomatic in terms of general health and lifestyle and just over 30 years later needed a pacemaker for an unrelated issue. Five years later everything is ok and I continue to lead a normal life.

[Jafib]

I am 55 and had almost exactly the same situation…didn’t have symptoms until they told me my bicuspid valve stenosis was severe. I went from biking up the mountain behind my house to doing nothing and feeling symptoms. That was a couple months ago now and I can say that 80% was anxiety and 20% was symptoms I was previously attributing to afib but was probably the stenosis…or maybe a little of both. I have valve replacement surgery scheduled for the middle of next month but go to Cleveland Clinic this week for another echocardiogram to verify the level of stenosis. Hope all goes well with you and you get the help you need.

[BicuspidBloke]

Similar story to me. Born bicuspid and diagnosed at 50, virtually no symptoms, operated on within six months. Was told by the surgeon after that I "was days away from a catastrophic event" because one of my two valves was just flapping about all over the place. It's very weird because I enjoyed it all - the pre-op attention, the hospital stay, the rehab, the recovery. Now, nearly two years on, I'm back to normal (ran a half marathon this morning). Don't get too down about the op - just let the experts do what they do best.

[Babulivia in reply to BicuspidBloke]

So fantastic to hear you enjoyed it all! Now that's an attitude! My surgery is schedule for October 28th and I'm still stunned at the news -- bicuspid valve repair needed and replacement of thoracic aorta and aortic root.

[BicuspidBloke in reply to Babulivia]

You'll smash it! Just stay healthy between now & October, let the pro's take care of you, stay positive from the minute you wake up. It's big. It's scary. It's serious. But millions have had these operations now - it's not like we're the guinea pigs of a pioneering operation forty years ago. Come back and let us know how you're getting on. Good luck!

[Babulivia in reply to BicuspidBloke]

Thank you so much!