Hi I’m 26 years old new to this page and live in Leeds. I’ve had aortic stenosis all my life it has changed to severe in these past few years since having my 2 children and I now also have an enlarged aorta.
I’m expecting to need surgery in the very near future but I am yet to have my discussion with my cardiologist about my options.
I want to hear stories of what valve you decided to go for and the type of surgery you had. The only thing that’s been mentioned to me is about mechanical valve- but the thought of ticking and working out my levels all the time and bruising easily doesn’t sound like it’s right for me to have to deal with for the rest of my hopefully long life. And I obviously don’t want to have to do the same surgery within 10-15 years. Has anyone’s surgery exceeded past the date they expected it to? Anyone got the new Edward Inspiris valve and had it a while? Is there a way of having surgery for what I need without it been full open heart? My main worry is my two young children depend on me so much. I dread to go to my appointments. Thanks in advance !
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Nicola1993
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I was born with a heart murmur, and lived with a cloud hanging over my head for 46 years ( from as early as I can remember I was told I would need surgery), during this time as a real youngster I was told I couldn't/shouldn't have children, wasn't allowed to run/take part in sports etc, well I'm happy to say I have two children now in their 30's and I'm as active as I can be X
I had my valve and aorta dissection in Apr 2012, I had a st.jude mechanical valve fitted, and yes it does tick, but I don't really notice it unless I'm really stressed! I do a physical job, ( just this week, we've had to carry a corner bath up and down stairs) we do bathroom/kitchen refurbs and also electrical works, I'm on warfarin for life and don't have any problems balancing my levels, I tend to eat what I want and drink what I want ( sometimes excesses are involved).
You can get a home testing machine for your inr but I've not bothered, I see my nurse every 5-6 weeks, can ring and see her sooner if I'm concerned, but have never had to X
I've just had a pacemaker fitted, and I didn't have to stop the warfarin for the op, just missed one dose.
I've never had an issue with bleeding on warfarin, I do/have had some magnificent bruises !
Personally having been through ohs I'd rather not do it again, so I'm glad I had the mechanical valve, but I know things have changed quite a lot over the last few years, so there is a chance that by the time you need surgery there maybe more/better options available X
I know how you feel dreading your appointments, I used to think about running away from home as a child everytime an appointment was looking!
My advice, would be to start planning backup care for you and your children, so that if/when the time comes you are already ahead of the game so to speak X
But most importantly, enjoy life, enjoy your family don't sit around waiting for something to happen X
Because of your age, the fact you have young children and, I assume, fairly physically active I would suggest the best tissue valve on offer and accept that you will need further surgery up the line. The life of a tissue valve is variable but a healthy lifestyle with appropriate medication can prolong it for many years. At that stage switch to a mechanical one to avoid further surgery as you age. Valve design may have moved in by then and I suspect warfarin will be used only for a minority of patients.
I agree with Michael, the new Inspiris valves are supposed to last a lot longer than the old tissue valves and even if it needs replacing some years down the line they may be able to do it with keyhole surgery.
I was diagnosed with a heart murmur at 16 and was monitored yearly until I had my first AVR at 52. I had a tissue valve but unfortunately it started to leak after a few years and I had a second AVR at the end of 2017. This time a chose a mechanical valve, mainly because I had to have my spleen removed in 2016 because it decided to kill all my red blood cells and as I now have a compromised immune system I didn’t want to run the risk of having yet another op, assuming I lived that long! 😜.
Please try not to worry about attending your appointments, your cardiologist won’t suggest surgery until it is necessary and will go through all the pros and cons of the various valves.
I have heard a few risk going for tissue valve and needing further surgery not many years after that it is a worry! I am looking at the new Inspiris valve- even though another scary risk as to not knowing when another surgery would have to be again! Ah so many decisions to make x
Hi let me tell you some facts.a tissue valve will last 8 to 15 years if you lucky some times a lot less.so that would mean going through the op another 3 times at least in your life.a mechanical valve can last a lifetime
Like you i was young, just 26,had 2 sons aged 1 and 4 a wife who depended on me and i on them that was 45 years ago.i am now 71,have been on warfarin all these years no probs,i self test and dose,pass my inr to the doc every 8 weeks,the mechanical valve is a no brainer so go for it girl
Hi Nicola1993. I had an AVR (Edwards Inspiris in fact) just before Christmas, so early days as yet for me, though I am already feeling the difference (in a good way). I'm a bit older than you (50) but also had a congenital bicuspid valve and severe stenosis so quite similar otherwise. Obviously everyone is different but for me the decision to go tissue was as follows.
My surgeon said that, at 50, I was on the cusp on whether they'd recommend tissue or mechanical. Often with younger patients, they do sometimes recommend mechancial because of the longevity issue, ie the fact that even with a 15-20 (possibly less, possibly more) valve lifespan you might be looking at multiple ops through our life if you're starting at such a young age. So it may well be that the decision is made for you!
However, as I did have the option, my thinking was that, while a mechanical valve could mean you wouldn't need to have another operation, my surgeon was clear that it wasn't 100% (there's always the chance of complications such as the valve becoming calcified).
I wasn't keen on the idea of Warfarin. People obviously do manage with it perfectly well, but the thought of regular blood checks (especially as I like to travel) and the potential risks of bleeding wasn't something that appealed to me. So I guess I was prepared to take a gamble - get 10-15 years Warfarin-free hopefully and see where we are technology-wise at that point. There are new types of composite valve being developed (the Moggridge valve in particular), which are essentially mechanical but may not need Warfarin. There is also (according to one doctor I spoke to in the hospital) a new generation of anti-coagulants coming in over the horizon (though still some years off) that may replace Warfarin. Ditto, tissue valves are evolving and improving all the time - in fact the Edwards Inspiris is so new there is no clinical data yet around it.
There was also the possibility that a replacement could be done by keyhole through the groin, though my surgeon was clear that would only be a possibility as, as yet, that is still a fairly rare procedure and often depends on the size of the valve you get. But, again, in time it may become more commonplace.
Clearly, my decision could backfire. I may end up having to have multiple ops etc. But when my wife and I were discussing things after seeing the surgeon, she made a very good point. It is genuinely 50/50; there are genuine pros and genuine cons with either option. So the key is to make your choice and go with it; don't regret it or wonder "what if". Whether you go for mechanical or tissue, embrace that choice and own it. Whatever decision you choose will be, by definition, the "right" one for you.
The other thing to say, not that this will help I know, is for me the worst bit was the mental and emotional build-up - the terror of thinking about what you're about to put yourself through - and fearing the worst for you and your family. But the doctors made it clear that, for them, it is nowadays a very standard, even straightforward operation, their "bread and butter" as he said. In many respects, as one told me, it is often less risky than some other forms of surgery, for eg trying to remove a cancer tumour, in that you're simply whipping something out and slotting in a new version of the same thing. Clearly, it is more complex than that and whatever anyone said to me beforehand I was still bleeding terrified, but I hope that helps!
Good luck with your appointments and do use this forum for advice and support - I posted almost exactly the same post as you last summer and have quickly developed a whole new "family" as a result. Everyone on here is awesome.
Thank you for the amazing advice you have given me, would be good to stay in touch with how things are going on the Edward Inspiris valve it’s really interested me but at the same time you are testing it really haha!- I can’t even bare to think for the fear if my surgery was actually booked - bet you are so relieved you have been through it all it’s all the unknown really that’s so scary. Thanks again for all this information x
No problem! Glad you found it helpful. That's what we're all here for! Yes I'm very pleased it's all done - and for me it was almost totally complication-free so I feel very lucky. My stenosis was discovered as a child so I've known almost all my life I'd need this operation at some point. But it was still a shock when "at some point" became "now"! Having said that, it's also almost weird now that it's no longer hanging over me. To be honest the valve is just there - it's working and long may that continue! Unlike a mechanical valve there's no ticking or noise or anything. I also just have to take a low dose of aspirin daily. I imagine I'll find out more about long-term follow-up at my follow-up appointment next month. Incidentally, if you do end up needing to have surgery I was at St Thomas's in London, which I really can't praise highly enough. Good luck again.
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