Overwhelmed!

[XlMardyBumlX]

You are probably getting sick of me posting now, but after a hospital appointment yesterday I am feeling quite overwhelmed by everything.

Bit of back story- I'm 22 with congenital aortic stenosis and aortic regurgitation. I have had 2 operations to balloon the valve as a baby which has made it possible to prolong surgery up to now. Repairing my valve is unfortunately not an option so replacement is a must.

You have all been so helpful regarding my questions about the surgery, so I was hoping I could get the same help now.

Yesterday I met my surgeon team, and consultant at Birmingham to discuss my surgery. I have been given a choice on what valve I feel is best for me, but to be honest I feel really overwhelmed by everything and feel as though I need to hear peoples experiences before I can prepare to make a decision.

My first option is a pig valve, I will safely be able to have children, no drugs needed, however this will only last 5-10 years.

Secondly, they have mentioned a mechanical valve, with this comes warfarin, which means the liklihood of successful pregnancy not being highly likely. I have been warned warfarin has high chance at causing miscarriage or severe problems with the baby. If during pregnancy I go on heperin, the baby should be okay however studies have shown many chases where the mother does not survive or has a stroke or other medical problems. (Really upset me considering my age and how much me and my partner want a family of our own).

I have also been given the choice of the Ross procedure. (Just incase you dont know) where they take my pulmonary valve and put it in place of my aortic valve, then use a donor to replace my pulmonary valve. There is no set time frame as for how long this could last, i would safely be able to have my family. However if and when issues do arise, i now have 2 heart conditions instead of 1 and there are more risks associated with this possibility.

Im unsure which route to go down and as you can imagine my head is all over the place. My question today is to be helped to understand peoples experiences with the ross procedure, its success rate and how long it has lasted for them? It would also be great to hear off any ladies with mechanical valves who have been pregnant etc and be helped to understand how it has affected them? But also to understand how people have come to make their own decisions when in my position.

I apologise for the long message, but again any information is welcomed and so greatly appreciated!

[KazSumm]

Wow 😮 I wasn’t really given a choice, I only saw the surgical team 10 hours before my operation. They decided it was best for me to have a pig Value, now I was told it should last me between 10 to 15 yrs and when it needed replacing I wouldn’t need open heart surgery it would be done by TAVR and as surgery advance so quickly by then some new procedures might be in place. Now as we have chatted before you know I’m 36 yrs older than you so I’m hoping my Peppa pig lasts for at least 10 yrs 😂 Personally I’m glad I didn’t have a mechanical Value, didn’t like the idea of warfarin .you

At 22yrs you have a life changing decision to make, and if you really want a family in the future I’d choose the one with the less complication which to me looks like the pig Value like they said to me by the time it needs replacing some new procedures and values will be around. Some months ago on here were a couple of people in there 20s who were having a new type of value I’m sure it was part biological part mechanical which didn’t need any warfarin, can’t remember the full name was like Edwards something they had it done in London I think you have to be but forward for it, tried looking for their posts can’t find them, it may be worth asking your surgical team. I’m sure you will get all the best advise to help make your decision .

Take care Kaz 💕❤️💖

[XlMardyBumlX in reply to KazSumm]

Sorry for my delayed reply! But thank you for taking the time to message me again!

I am currently trying to do as much research as i can before i make a decision but also wanted some real life experiences to go off!

Thank you for your help xxxx

[Petercat1 in reply to XlMardyBumlX]

I also didn't have a choice as mine was an emergency open heart op for a dissected aorta and replacement aortic valve. I was given a pigs valve and have been told it will last 10-15 years, but I won't have to be opened up for the replacement. If you have the mechanical valve you have to have warfarin or similar to help the blood flow through the valve. I had aspirin for mine, but recently stopped taking it. My op was 3yrs 7mths ago.

Good luck

[Fortepiano]

I am much older than you, so our situations are not comparable, but I chose a Ross three years ago and have been very happy with my choice.

Choice of replacement valve is very personal, and none of them are perfect.

I was influenced by a study of the entire UK congenital database, comparing tissue , mechanical and the Ross, which showed best outcomes for the Ross. Tissue lasted least well ( young people have strong immune systems). I knew I didn't want a mechanical valve because of the ticking and warfarin. My husband was on warfarin for many years and I didn't want the worry about bleeding/ stroke or my life medicalised by the constant testing. I would prefer reoperation ( many people feel the reverse!).

However, I'm long past child- bearing but I do know that pregnancy with warfarin is very dangerous, both for the mother and the child. Yes, some people have succeeded, but the risks are very high (and also make pregnancy extremely stressful). It's certainly not recommended.

Like many women I had a small native valve (21 mm). The problem of TAVR within a failing tissue valve is that no artificial valves are as large as a human valve, and a TAVR will make it even smaller. A 23 mm valve is the smallest possible for TAVR and a 25 mm gives better outcomes. You are young, so the TAVR itself will need replacing by OHS.

Basically with a tissue at your age you will definitely need another operation. With a Ross you have a chance ( but not a guarantee!) of not needing one. Most reinterventions are to replace the donated pulmonary homograft, and this is generally done by catheter rather than OHS. Problems with the autograft are generally not with the valve but the aorta, and often the actual valve can be retained. There is also now a PEARS procedure for dilated aortas which, though an OHS, doesn't need bypass.

I think the accepted rate of reinterventions in the Ross is around 20% at 20 years. Very few people have problems with both valves.

The Ross is a longer and very skilled operation which in the UK is only available in congenital centres, but because it's only done by highly skilled congenital surgeons it's very safe ( the latest 2015-16 UK national congenital surgery database shows 100% survival, with ordinary aortic valve replacement 99.3% survival - so both are very safe). I had complete confidence in my surgeon. I wanted the Ross primarily because it has the best haemodynamics of any replacement valve - it's often chosen for athletes. I love hill- walking, and wanted the best possible exercise capacity, more than a 21 mm artificial valve could provide. I remember feeling utterly exhausted for the first few weeks, and took time to fully recover, but now I can climb Munros!

So with tissue you know you will need another OHS, with Ross you may need one, and the Ross works much more like a native valve and gives the best exercise capacity. It is recognised as the best choice for young people, especially young women who want children. I feel very lucky to have been offered it at my age, and accept the possibility of future reintervention.

Valve choice is very personal and the Ross isn't for everyone , but I would say go for it!

[XlMardyBumlX in reply to Fortepiano]

Thank you for all that info!! I am slightly leaning more towards the ross but its so helpful you telling me all this and to hear your experience so thank you! I am glad to hear you are doing so well! Xxxx

[Nettyanne]

I have just read KazSumm's post, I think she is referring to the Edwards Inspiris Resilia aortic valve. I can't write more now but if you Google for the valve you will find lots of information.

Annette

[XlMardyBumlX in reply to Nettyanne]

Thank you, i will have to have a look! Ive not heard of that one before

[MichaelJH Heart Star]

I am a lot older but I will give my opinion for what it is worth. At this stage I would go for the pig valve, allow a year to recover and then try for children during the next decade. When the valve comes up for replacement there will probably have been further developments.

[Marco_]

I also need an aortic and mitral valve replacement. I'm male in my late forties so older than you but similar dilemma re mechanical vs tissue valves.

I ruled out mechanical valves mainly because of the audible clicking they make, but also didn't want warfarin for rest of my life.

I researched and found this new anti calcification tissue valve that should last >20years. However no live data to back that up.

INSPIRIS RESILIA By Edwards

edwards.com/_layouts/Edward...

Also link with newspaper article:

dailymail.co.uk/health/arti...

Whilst researching I came across a video clip on YouTube where Arnold Schwarzenegger talks about his experience with Ross procedure.

youtu.be/iOOoyDXgHPs(Not working as expected?)

Hope this helps and good luck.

[Fortepiano in reply to Marco_]

The moral of this video is don't be an idiot like Schwarzenegger and raise your blood pressure very high right after surgery! It's true the pulmonary valve needs time to adapt to a higher pressure position- that's why you are put on bp lowering drugs for 6 months afterwards. Failure like this soon after surgery is an extremely rare event and entirely his own stupid fault. Interestingly for his next valve he went with an aortic homograft rather than tissue / mechanical ( better haemodynamics but not as good as Ross, doesn't last as long and harder to reoperate as heavily calcified root).

Weight- lifting is also not recommended, so maybe the Ross wasn't the right choice for him!

I think the Resilia looks promising but of course it only has 1 year data so far. My guess is it will last longer than present tissue valves, but how much longer no one knows, and like all artificial valves it still has poorer haemodynamics in small sizes. Every choice has advantages/ disadvantages.

[XlMardyBumlX in reply to Fortepiano]

Oh trust me, at 5ft I'm not going to be weight lifting hahaa!

Thank you for that information, i actually hadnt heard of some of these newer procedures!!

[Rosie1066 in reply to Marco_]

I have Mechanical Valve and the ticking is not a problem in fact it gives me reassurance that my hearts still working! It’s a very personal choice and only you can make that choice.

[XlMardyBumlX in reply to Marco_]

Sorry for my late reply, but thank you for taking so much time so send me those links and the video! It's been really helpful honestly and it is greatly appreciated!

The warfarin and being unable to have a family has put me off the mechanical but i just feel as none of them are particularly amazing solutions!

Thank you for sharing your story!

[Fredders]

I had a tissue valve for my first AVR, which unfortunately only lasted 6 years, so I had another AVR last November but this time I had a mechanical valve. I can’t hear my valve unless it is very quiet and even then it is very quiet. I have also been quiet lucky and been able to get my inr levels fairly steady very quickly.

I think at your age and if you do want children I would go with the tissue valve. When it needs replacing who knows what options will be available, they are making so many advances.

Hope everything goes okay whichever you choose.

Wendy

[XlMardyBumlX in reply to Fredders]

Thank you for sharing your story!

Thats terrible that it only lasted 6 years but I am glad you have adapted so well to your mechanical one!

I hope you are doing great with your recovery and I appreciate you taking rime out to reply! Xx

[Pink47]

Hello!

I can't offer much advice I'm afraid, but being 23 with severe Mitral Valve regurgitation, I can imagine how you're feeling and I often feel overwhelmed when I think about it all too.

Fortunately, I'm currently watching and waiting until I will need the surgery and I'm hoping they can repair the valve and I won't need a replacement. However, I've thought long about what decision I would make between a mechanical and tissue valve. I personally would prefer a tissue valve as I feel being on warfarin and trying to start a family would have many complications. It's both really difficult and life-changing and they both have good and bad points! You just have to go with what will be best for you. I'm sure whatever decision you choose will be the right one. I wish you the best of luck in your surgery. 💕

A xx

[XlMardyBumlX in reply to Pink47]

Thank you for your reply! Honestly I'm so glad to hear off someone who is around my age facing the same situation.

Hopefully you are able to just have a repair, that would be sooo much better!

I have thought that myself with regard to a tissue valve over a mechanical. I really dont want to be in my 20s and on warfarin!

Hopefully you keep on doing as well as ypu are and good luck for the future! If you ever need anything i could offer advice wise, dont hesitate to message me again xx