Mechanical Valve Noise and Quality of Life Study

[Consuela]

Would tissue valve have been better ? I am a lifelong insomniac, depressive, lots of anxiety and have had full blown reactive tinnitus and hearing loss for 26 years so I dread the ticking as well but also dread future surgeries from a tissue valve

Tissue valve would have to be replaced every so many years. So that would mean another surgery. Try sleeping on your right side, if you prefer that side, with a pillow under your chest and your head snuggled into it.

 

[pellicle]

Ignore it and be greatful you're alive. After awhile you won't even notice it. I've had my St. Jude valve since 2007 and expect it to last longer than I will.

this would be the advice I give too, but I've found that the modern worlds people seem to not be able to do that and feel something which makes them feel entitled to it being fixed like they see on startrek shows. They need a no-compromises valve that lasts forever and never need to make changes in their life that they didn't want to .

I'm going to go out on a limb here and will quote a song I reconcile with (for other reasons) by George Michael:

For what's the use in pressing palms​

When children fade in mother's arms​

It's a cruel world​

We've so much to loose​

And what we have to learn we rarely choose​

Indeed in my life I've been faced with learning so much that I did not choose to learn. Instead of only whinging about it I also learned how to cope.

If I hadn't, the choice would be madness or embitterment.


PS: you can rightly guess I had a good friend die when I was a yound man and watched the effect it had on his mother. So you could say "George wrote that song for me" - and indeed the many others who lost a dear friend or mothers who lost a child. I've lost a wife too ... all things the most of those who live in the west only seem to learn when the reality of life slaps them in the face when they are over 60 ...

Life is tough, if you don't know that when you're growing up you'll fold when it gets tough.

 

[thomas999]

this would be the advice I give too, but I've found that the modern worlds people seem to not be able to do that and feel something which makes them feel entitled to it being fixed like they see on startrek shows. They need a no-compromises valve that lasts forever and never need to make changes in their life that they didn't want to .

I'm going to go out on a limb here and will quote a song I reconcile with (for other reasons) by George Michael:

For what's the use in pressing palms​

When children fade in mother's arms​

It's a cruel world​

We've so much to loose​

And what we have to learn we rarely choose​

Indeed in my life I've been faced with learning so much that I did not choose to learn. Instead of only whinging about it I also learned how to cope.

If I hadn't, the choice would be madness or embitterment.


PS: you can rightly guess I had a good friend die when I was a yound man and watched the effect it had on his mother. So you could say "George wrote that song for me" - and indeed the many others who lost a dear friend or mothers who lost a child. I've lost a wife too ... all things the most of those who live in the west only seem to learn when the reality of life slaps them in the face when they are over 60 ...

Life is tough, if you don't know that when you're growing up you'll fold when it gets tough.

Thanks,my whole life has instantly changed for the better!

 

[pellicle]

Thanks,my whole life has instantly changed for the better!

Not sure what you mean here;

 

[Warrick]

I think maybe they mean maybe you could start your own ministry..
All cheques made out to Combined Australian Stricken Hearts or C.A.S.H. for short....

 

[Superman]

Not sure what you mean here;

You pretty much said, “Suck it up, Buttercup.” Is the solution.

He suggested that you take your advice and stick it.

. I’m like google translate for sarcasm and passive aggressive posts.

 

[pellicle]

He suggested that you take your advice and stick it

Well, I wasn't talking to him anyways. I'd like to see him try that approach in person...

 

[pellicle]

I think maybe they mean maybe you could start your own ministry

 

[Nick Drew]

quite annoying at first but completely used to it now after 5 months. I also tried white noise but just get on with it now

 

[Timmay]

Just to confirm some things other people have said ...

• Earplugs are a big no. It just amplifies what is going on IN your body. This only matters during sleep. Doesn't matter at all when going target shooting or exercising with your in-ear earbuds music playing, etc.
• Sleeping on one side is more audible than the back or the other side. For me it is my left side. I *DO* lay on my left side at night but I can't sleep on that side because, for me, that side amplifies the valvular noise up into my throat. It sounds way worse than what it really is. It's not horrible by any means ... I just would rather not.
• I definitely did eventually get used to it (but I also had no worry that I would). I was told that I would eventually find comfort in the noise. Guess what? I actually do.

I truly think that if you're the kind of person that finds yourself being noise-sensitive in a truly negative way, then you really want to balance quantity of life with mental frustration & more operations in your life. I know people where a mech valve would drive them crazy. And I mean that literally. They would choose a more risky life with more struggle and more operations just to not have the noise that is only evident under certain conditions. I am not at all saying that I understand this or advocate it ... just that I have seen this in action and know people where this is true. I have personally witnessed individuals become extremely angry at the sound of potato chip crunching.

 

[Superman]

I have personally witnessed individuals become extremely angry at the sound of potato chip crunching.

A reasonable response to such stimulus. Or worse, the sound of someone brushing their teeth. Drives me nuts.

Brushing my own doesn’t bother me, but I don’t like other people brushing theirs around me.

It’s on account of my super hearing and all.

But I’m used to my valve so that’s good.

 

[TeresaUK]

I have been a fly on the wall here for years and rarely comment. But I feel I want to share something now because it was a BIG deal to me. I cannot stand any repetitive noise - foot tapping, screen tapping, keyboard tapping, chewing, sniffing. Any kind of beeping, vehicles reversing, machinery pinging & clicking........ All those gadgets in hospitals and kitchens, all beeping away. You get the gist. So in those first few months after I first heard my aortic valve clicking away so loudly that those nearby in a quiet room could hear it, I thought I would probably go insane or at least be very miserable forever. Nights were long and annoying. Days were ok if I wasn't in a quiet room. That was many years ago now and I don't recall at what point I stopped noticing it (mostly) or when it stopped bothering me (completely). But it happened and here I am. Relatively sane and not at all miserable.

 

[Timmay]

@TeresaUK - Thanks so much for sharing your experience for others to read. I think it’s really great to hear experiences from those who are affected by noises like that and where you are now. Super happy that you got past it.

 

[Y-von]

I hear it more when my mouth is open, so internally. I kinda enjoy it

 

[Mike239]

Would a sleep apnea machine have any affect at diminishing the valve noise? If in fact you needed to use a sleep apnea machine for medical reasons.

 

[pellicle]

Would a sleep apnea machine have any affect at diminishing the valve noise?

well I can say that I've just finished doing the yard work and with ear plugs in and using the lawn mower and whipper snipper I never heard it ticking once ;-)

 

[Thomas67]

Just wanted to chime in with a response. I've only had my on-x valve for 8 days, but the last couple of days it seems like I can feel the valve clicking when I take a deep breath, but so far, I can't hear it. Anyone else *feel* their valve?

 

[Timmay]

Just wanted to chime in with a response. I've only had my on-x valve for 8 days, but the last couple of days it seems like I can feel the valve clicking when I take a deep breath, but so far, I can't hear it. Anyone else *feel* their valve?

I can feel mine on a REALLY deep breath too. I imagine it’s because a deep breath compresses everything in there and creates a situation where the valve can reverberate through all of that tissue.

 

[pellicle]

Anyone else *feel* their valve?

Me too
My parents had a couple of loud clocks in the house, one was a grandfather clock actually made my my great grandfather.

We hardly noticed them, but visitors did. If they stayed a few days they would often discover that they'd stopped hearing the chimes.

That's how it is with my valve too, I go for hours without noticing it or noticing it for long.

Recovery is perhaps worse because you have nothing else to do.

I suppose that if one chose to obsess about it you could drive yourself mad. But then I'm too lazy for that. Instead I occasionally tune in probably because my brain has noticed something.

I personally view this ability as a good thing.

 

[Survived03]

It's also worth mentioning that biologic valves often aren't "silent" for the recipient. I had Edwards Resilia valve implanted about 18 months ago. When sleeping on either side, I hear a pronounced "lub-dub", especially the "dub" part when the valve closes. Granted, no one around me can hear anything nor do I hear anything except at night with my head on the pillow. No valve is perfect.

I would also add just having a Dacron aorta and valve root is noticeable. Highly noticeable for the first year or so. I tried white noise but eventually found a way to forget. As Pellicle mentioned, does help with counting pulse and when I had flutters it was amplified. For a few months I could also feel my pulse behind my eyes too. My aorta replacement goes up to the arch and ever so slightly past the first branch but just at the bottom.