Looking to discuss Bicuspid Valve Disease

[Nick_1814]

Facing surgery would like to discuss options

[Nic25]

Do you mean aortic valve replacement Nick and the toss up between mechanical or tissue valves? If so, lots of people here can help I'm sure! I had a tissue valve in 2018 for eg. Or do you mean the op or type of op itself? But may just need a bit more info as to what you're actually looking for advice on? Cheers Nic

[Nick_1814 in reply to Nic25]

Hi Nic - thank you for getting back, yes exactly that. I have severe aortic stenosis and now facing surgery in the next couple of months. Ideally I would prefer TAVR to a mechanical valve/open heart surgery (taking warfarin). I'd very much appreciate connecting with someone who has been through the operation, recovery time, what to expect, so I can somewhat prepare. Cheers Nick

[Tessie28 in reply to Nick_1814]

Hi Nick, I had my new valve in March. Depending on age they won't do a tavi. As in you may be too young for it...it has more risks I think. I have a Regis Inspiris tissue valve. A new generation of valve which actually has room for up to 2 tavis should you ever need it. I am not on blood thinners with this.

It has been a weird few months but then it has for everybody. But, with the exception of the odd ectopic beat, I am doing really well. Had excellent rehab with Harefield and very good follow up including ecgs, holters and an echo.

The hardest thing is the mental side of it in my opinion. But part of that is no social contact I think. No real pain excepting when they took my staples out LOL, some choice words that day!

The value of this site and a site I belong to on Facebook has been enormous. The BHF nurses are great. You have to remember that what is big and scary for you is just an everyday operation to a heart surgeon.

Take care, Teresa

[Nick_1814 in reply to Tessie28]

Thank you Tessie,

This is helpful to read - agree it's a testing time for everyone at the moment. I'm speaking with a TAVI surgeon to discuss any realistic options beginning of December. Did you have open heart surgery for the tissue valve? Agree the hardest part is the mental side.

Thanks again, best Nick

[Tessie28 in reply to Nick_1814]

Oh yes, 23cm scar healing well though.

[Nick_1814 in reply to Tessie28]

Great to hear, wishing you speedy recovery. Sounds like you are on track, positive mindset is everything 👍

[Nick_1814 in reply to Tessie28]

Also glad that you are recovering well Teresa - that is encouraging.

Best,

Nick

[Nic25 in reply to Nick_1814]

Hey Nick. As Tessie says TAVI by and large is only offered on the NHS for those who are physically not well enough to cope with open-heart surgery, so it may not be an option for you. But obviously something to discuss with the surgeon - TAVI by the way is the operation, not the valve, just to be clear.

I went for the Edwards Inspiris Resilia tissue valve which is supposed to last considerably longer than a conventional tissue valve (20-25 years as opposed to 10-15) but we will see I guess! I have been very happy with the outcome; the only drug I take for it is 75mg dispersible aspirin each day, which is pretty straightforward. I was 50 when I had my op in 2018 and had assumed I would have no option but to go mechanical so I was pleasantly surprised to find it was an option on the table.

My take was a) no need to deal with warfarin (though people who do say they manage fine), b) while mechanical means you shouldn't ever need to have a second op, there's no guarantee in life that that will be the case, and c) who knows where the tech will be by that point in terms of advances? But, again, one to discuss with your surgeon probably and there are genuine pros and cons to each choice, so no 'right' answer.

In terms of the op, it was all very smooth for me, no or very few complications or anything. I was in and out in a week and then just home to recover, which took a couple of months or so. The main healing, for me, was simply the sternum healing and knitting back together. But very happy to answer any specific questions you have (and happy to connect too if that's easier).

One thing, start practising getting up from the sofa/chair without using your arms. It's not as easy as you'd imagine and it'll help immediately afterwards as you're not supposed to push up with your arms initially.

Good luck - the waiting/terror in my opinion is almost worse than the op itself, which these days is a very common and, while still a major operation, very straightforward operation for the surgical teams. So I'm sure you'll be in good hands.

Look after yourself. Cheers Nic x

[Nick_1814 in reply to Nic25]

Thank you for your message Nic,

The support is great on here... glad to hear you've recovered well and your operation was a success. I'm trying to find alternatives to open heart surgery. I've read there are also keyhole surgery options? Yes I understand the TAVI process, I'm speaking with TAVI surgeon beginning of December to discuss whether this could be an option, not sure at this stage. Also I don't want to take warfarin, although understand it may suit others - agree it's the mental apprehension that is so big.

Best,

Nick

[Tessie28 in reply to Nick_1814]

At Harefield they do have surgeons who make a minimal cut under the arm. But those people who had this when I was in also had issues with water on the lungs. Might just be coincidence of course. I was in for 2 and a half weeks. Had a few neurological issues so they did more tests etc.

[Nic25 in reply to Nick_1814]

Hi Nick. I'm no expert but I believe the only keyhole option is TAVI? Mick Jagger had it when he had his AVR (but I imagine was able to call the shots!). But there may be others I guess? But yes definitely one to have a good discussion about with the surgeon.

With Warfarin, and obviously I am biased as I chose not to go down that route, everyone I've seen on here says they manage fine, just if it helps. There are portable machines you can use for the blood testing, which means you're not constantly needing to go to the GP blood clinic and, generally, while it does mean an adjustment in terms of diet and stuff (vit K especially) it's more about being consistent than cutting things out. But I'm sure many who have gone down the mechanical route will be able to give you much more expert advice!

The other thing some people flag up with the mechanical valve is the ticking noise. Some find it drives them mad, others find it reassuring. Most say it fades over time (either I guess because they get used to it and tune it out or because of the sternum healing, but again I'm no expert). But just something else to be aware of around mechanical as an option. But with tissue you do make a conscious choice to accept that you will need another op at some point. So I guess that's the payoff?

But good luck with your discussions and research. Do keep us posted how things go if you feel up to it.

Nic x

[Astronomyrules]

Hi Nick, I too have severe aortic stenosis needing an urgent valve replacement and diagnosed 1 year ago. Still waiting for the op after 2 cancellations, but I think that is because of the area I live in where demand for heart ops is high and only 1 hospital for the whole county. As I also had a by-pass 17 years ago and have extensive peripheral artey disease I am to have a tissue valve by keyhole surgery. Im 68 and have been told that if I outlive my valve, I can have a second one, also by keyhole. I'm telling you this because if the shorter life of the tissue valve is the main factor, combined with the thought of a second full op puts you off, it may easily be the case that a TAVI could then be used, (by catheter through the groin or by entering between the ribs as in my case) if the first valve needs replacing. I think it is worth discussing this with your cardiologist/surgeon if it helps you to make up your mind. If I had a choice, which I didn't, I would have chosen a tissue valve over a mechanical as I don't want to be on Warfarin if I can help it, but others in the forum are very happy with their mechanical valves and their medication. I dont have any information on recovery from my kind of op. I asked the forum, but no one who'd had it replied. However I can update you as to how I get on if you are interested. I'm now hoping for mid December, but haven't been given a new date.

[Nick_1814 in reply to Astronomyrules]

Thank you for taking the time to message Astronomyrules,

I'm sure you must feel frustrated with waiting and the 2 cancellations, I would feel apprehensive too. Everyone going through such uncertain times. Thank you for explaining, reassuring to understand everyones individual journey. Yes I understand about the TAVI operation.. like you I don't want to take Warfarin if I can help it. Trying to explore what alternative surgeries exist to open heart surgery. Daunting at this stage. Best of luck with your operation and recovery, please stay in touch.

All best,

Nick

[Astronomyrules in reply to Nick_1814]

Hi Nick, thanks for your commiserations re the cancelling. I hope that things are speedier in your area and that everything gets sorted for you soon. If you do end up with full surgery its really never as bad as you think. Its reckoned to be the gold standard. They take very good care of you and there are loads of hearties here who can answer any specific queries or worries you might have about the op or recovery after. I'll post when mine finally happens. Good luck to you, whatever the final decision.

[Tessie28 in reply to Astronomyrules]

Hi, I have hearty friends who had keyhole. As I said to Nic they had water on the lungs after but that may just be luck. Their recoveries are pretty much on a par with mine. It is the mental side which is harder than the physical. I had excellent rehab but not everyone does. Even with keyhole it has still been a big shock to your body. It is not like when I had my gallbladder done by keyhole! LOL I wish.

[Astronomyrules in reply to Tessie28]

I'm so grateful for your reply Tessie as I'm concerned to know something of the recovery as people generally seem to think that as its keyhole it will be a minor op with a minimal recovery time. That coping with the body shock is a factor is helpful. I wasn't told of water on the lungs as a complication which, coincidentally, was a complication for me years ago when I had my bypass, but I was told at my pre-op consultation, that there is a 5% chance that a pacemaker might have to be inserted within a day or two after, due to the operation. Theres a 95% chance that I won't need one so I'm fixing my mind on that. When I asked about recovery I was told I'd be fine in 3 weeks, but 'fine' is rather vague and I fear that their definition of 'fine' won't accord with mine. Bearing in mind what you've said, I think I will have a chat with the BHF nurses to see what light they can shed on the recovery process. Thank you again

[Tessie28 in reply to Astronomyrules]

Oh bless you no if you are having a valve replaced it is major surgery. It takes time to settle. For example when I first came home I could only manage the stairs one at a time with both feet on, like a toddler. I don't want to scare you but you need to know what is ahead.

[Astronomyrules in reply to Tessie28]

Thanks Tessie, its not the known that scares me, I can plan for that, its the unkown.😆

[Tessie28 in reply to Astronomyrules]

For sure it is the waiting and wondering. You will be surprised how you will adapt and heal. Lots of help here and on Facebook groups.

[Nic25 in reply to Astronomyrules]

Hey Astronomyrules. I know this is technically Nick's so I'll keep this short. But just to wish you best of luck and hope it all happens for you soon! The cancellations must be massively frustrating but fingers crossed for you.

Cheers Nic x

[080311]

Hello Nick_1814

Welcome, I have just had a look at your bio, can I ask why you feel that open heart surgery isn’t something you want to do? I can appreciate your young and having to have aortic valve replaced is quite something to get your head round I had it replaced 4 years ago when I was 68 so much older than you . Along with the valve had bypass as well, and it took along time to realise what had happened to me. When our body lets us down when it never has before it comes as huge shock.

Research what is out there, though as others have said TAVI is normally only done if you are to sick to face the trauma of open heart. Someone in at the same time as me had it but she had a kidney problem.

As for valve type, again research talk to your surgeon take his/her advice they normally know what is the best thing for their patients. Here on the forum there is a range of different valves I have a tissue (pigs) my surgeon said he thought it was best for me, with you being so young maybe mechanical will be suggested, but as you know this involves warfarin.

You have time to think, and you know your life style, playing sports having a drink all these need taking into account.

I wish you lots of luck let us know how you go.

Best wishes Pauline

[Smarticus in reply to 080311]

As always Pauline is spot on. Im mid 40s now with a mechanical valve, any questions ask away HTH