Aortic Valve replacement at 32 years of age

[Winterwalker]

I’m 32,years of age, a first time mum of a 9 month old baby boy and I’m facing heart valve surgery at some time in the not so distant future. I have congenital bicuspid valve and regurgitation remained mild throughout my childhood and early adulthood. It was only when I was reviewed at 4 months pregnant with my son last year that it was discovered the regurgitation was moderate to severe. Due to wait list for further review in Northern Ireland I was not due to be seen on NHS until next April therefore I paid for a private review this summer, following echo and mri it was discovered things have progressed to severe regurgitation so I am being referred for surgery. I’m gutted really, from looking online it appears to be unusual to be going through this at this age, I hoped it was far off in my future. I know if I have a mechanical valve (as recommended for younger patients) that I will be unable to have any more children and I’m finding that hard to come to terms with. I would love to speak with someone who has gone through a similar experience.

[RufusScamp]

I have not had a similar experience, but I want to say how much I feel for you. The mechanical valves are good. A friend (male) had one in the 1990s and is still going strong, but learning about no children must be a real blow. Have you tried talking to the BHF nurses? (Contact details on the main website).

[Milkfairy Heart Star]

Hello Winterwalker,

Welcome to the forum.

I suggest you ask to have a review from a team experienced in caring for patients with congential heart conditions including pre pregnancy care.

Please don't give up hope about future pregnancies until you have had expert advice.

This may mean you having to travel.

The Somerville Foundation is a charity caring for adults born with congential heart conditions, hopefully they will be able to help.

thesf.org.uk/

[Wellington19]

I am waiting for aeortic valve replacement at st barts and also some work on heart muscle, on surgery list but no date, take care

[G1880]

I had Severe Aortic Regurgitation with a Bicuspid Aortic Valve diagnosed at aged 26. Passed down from my mother who had an acute dissection and survived.

I had no symptoms and was monitored on a 6 monthly basis with echo, treadmill ECG and cardiologist review, despite the leak being severe.

Last year (aged 40) I started to notice the onset of occasional breathlessness and got a referral to a surgeon for an opinion.

Earlier this year I underwent a valve repair. The surgeon remodelled the bicuspid into a tricuspid valve and reimplanted it.

This means no blood thinners and also no worry about needing to have a biological valve. It was suggested they may have only have a 10 year lifespan before needing to be replaced.

I also had my aortic root replaced at the same time with the family history of dissection being a risk factor.

The whole procedure was called a Valve Sparing Root Replacement with Aortic Valve Remoddling.

I’ve recovered well and have no restrictions on any day to day activity or lifestyle.

[Jules2021]

Hi. My son was diagnosed with a bicuspid aortic valve when he was 1year old. He is now 13 and his last two reviews showed it is getting worse(the last one moderate+ stenosis). He has been put on medication and went for mri for which we are still waiting results . As u say the waiting in N Ireland at minute is not good and we are still waiting on Julys review. The consultant did say that he would now be looking at valve replacement in adolescence. All very scary but the cardiologists know what they're doing and although its a big deal to us its all very routine to them so we have to trust they know best.Having had a massive heart attack myself this year(age 43) i have first hand experience that these guys are good at fixing things lol

Good luck with your journey x

[Hidden]

Hi Winterwalker,

You have a similar story to my own, other than I'm male so I can't really imagine what it's like regarding your pregnancy concerns.

I'm not sure where or why the recommendation for a Mech valve has come from, but, it may be worthwhile querying it and request further information on all the options available.

As said by Milkfairy, there are resources out there that can provide good advice.

I was 33years old, when I eventually had my first AVR, I had a Tissue Valve fitted which rumbled on and on for 19 years, longer than expected at the time. The valve was my Gift of Life.

Be under no illusion at your age, further surgery would probably be needed at some point with a Tissue, and it is does come with more risk. From what I've read on here, the new generation of valves have a life expectancy of 20+ years.

I now have Mech valves, which I had fitted at 52, which was a choice made due to circumstances, but, I have absolutely no regrets on choosing a Tissue first time around.

You may be surprised how many of us there are out there who had surgery relatively young.

Take care and best wishes

Heed

[Faub]

Hello, I am sorry to hear about your condition. I am 40 and I just underwent an aortic valve replacement on 01st October. I also felt that I was too young for having a mechanical valve and be on warfarin for life, particularly because it does not really fit in my lifestyle. Thanks to my age and fit health condition, I was offered what is called "Ross procedure". You can look for it online, but basically your defective aortic valve is replaced with your own pulmonary valve, which is then replaced by a deceased donor one. It is a bit more invasive procedure, and not many hospitals can perform it, but it gives excellent hemodynamics, no need of any anticoagulants and it can last about 15/20 yrs. You can find some studies online about it. Maybe this could be something you can find out if a surgeon in your area can perform?

[Cathrd]

Hi Winterwalker

I’m so sorry that you’ve had this news. I was 37 when I had a sudden illness and was diagnosed with endocarditis which damaged my aortic valve. The regurgitation was so severe that I was told not to walk if I could help it and most definitely not to walk uphill. I was put on a list for urgent surgery and had my valve replaced.

I opted for a mechanical valve and I’m now on warfarin for life. For me, the decision to have a mechanical valve over a tissue valve was made because I don’t want to go through open heart surgery to replace the valve again in approx 15 years time, if I can help it. I have one child but wasn’t in the position of having any more but I do understand how you feel at being told that, as even though I wasn’t planning on having any more children myself, being told that you can’t hits home and I was upset at the choice being taken away from me. I left my surgeons office feeling gutted and in tears at the news.

3 years down the line I now think differently and feel that I would much rather be here and as healthy as possible and able to live a normal life with my daughter that that I do have, rather than yearn for a child that I may or may not have had for various reasons. I’m grateful for what I’ve got and that I’ve got through it all.

If it’s really important to you to have more children then maybe a tissue valve would be the best option for you? You may need to have it replaced in years to come but then you could always choose a mechanical valve then, once you’ve completed your family? I believe the reason you would be unable to have more children isn’t due to the valve itself but being on warfarin. So a tissue valve where you don’t need to take any warfarin could mean you are still able to have children?

I know it’s a huge decision to make and I have every sympathy. I wish you all the best with whichever option you decide. If you’d like to ask me anything regarding my surgery then please feel free to ask x

[Ghost84 in reply to Cathrd]

I also had a AVR aged 36 due to endocarditis and opted for the mechanical valve. It's been two years and warfarin hasn't hindered me as much as I thought it would.

[Ghost84]

I had AVR aged 36. I been through the feelings and emotions you're facing. My advice would be think positive don't stress yourself out with worry over things you cannot control. Secondly consider the new inspiris resilia valve, it's a new valve that but is meant to last 20+ plus with no need for warfarin.