Desperately need advice on Tissue or Mechanical

[2ndvalvereplacement]

Im 36yr old female having surgery on Nov 13th. I had min invasion open heart surgery may 2007. I had my arotic valve replaced with a tissue valve at 25yrs young. My tissue valve is 11yrs old & has build up calcification as I have read is quite common. I know risks of each one lifelong Coumadin the other a third open heart & scar tissue. I have extreme anxiety & am not only terrified the clicking noise will drive me crazy but I also do not tust myself to be responsible enough on blood thinners please no judgement I have drove myself crazy already trying to figure out what to do. I should have look into these forums before this but I honestly didnt realize how much help they really were. I have spent the last three days pouring over others stories & experiences I just need some direct advice. Please feel free to ask any qs about me as I want the best advice i can recieve. I realize its a person choice but I agonies over daily situations so this one has my head spinning. It woke me up from sleep to see whst others had to say...please help Im really struggling here

 

[ForeverThankful]

I had my aortic valve replaced at age 55 and I went with a mechanical valve. I was leaning towards a mechanical valve and then I asked our family doctor, a woman we've been seeing since the 1980's and trust very much, what she would do if she were me. She emphatically said that she would go with a mechanical valve with no hesitation. She assured me that managing my INR on Warfarin would be no big deal and she was right.

About the clicking noise, I don't have any clicking noise so I really can't help you with that except to say that is definitely possible to not have a clicking noise.

Try not to drive yourself crazy thinking about it, take a few deep breaths and relax. You'll make the right choice for you.

 

[Warrick]

IMO Theres no one answer and being a similar age as you when I had my op, for me having a parent who had already had a mechanical valve for 30+ years I didnt even consider tissue
( and I’m glad I didnt or I would have struggled too).
Yes the clicking is audible all the time (for me anyway not all) but you DO get use to it, and its become normal to tune out to it most of the time.
And warfarin does become second nature, management wether by someone else or in time yourself is simply a time thing, and theres loads of info and help here. If you can read a recipe and bake something edible or you can read the tv guide and set the tv box to record a program it 3 days time then you can do the same with warfarin.
Tissue would mean another decade or so again of not having to worry about it and perhaps if you plan to have more children, and then were to from there in your mid 40s?
I know Im not looking forward to doing OHS again so to minimise that risk to you then theres some trade offs I guess

 

[Paleowoman]

2ndvalvereplacement There is a new tissue valve which came out last year which is designed to last a long time which is being given to younger patients, do a search for Inspiris Resilia on the forum and the net. Here's one thread of many: http://www.valvereplacement.org/for.../881446-edwards-resilia-inspiris-aortic-valve and here's an article from Cardiovalscular News: https://cardiovascularnews.com/firs...ces-inspiris-resilia-aortic-valve-take-place/ Obviously this is something you would have to discuss with your surgeon. I know it's an incerdibly difficult decision to make whatever you choose.

 

[Warrick]

Good point Anne I completely forgot about the Edwards valve, another side to the options

 

[Superman]

Sounds like you’ve got the math right.
More surgery likely vs more surgery possible.
Warfarin necessary vs Warfarin possible.
Clicking likely vs no clicking.

Maybe just continue that with a full pros and cons list weighing what you can live with vs what you can’t. By the end of that exercise you should have the answer that’s best for you. Then you just move forward taking care of the one certainty. You can’t keep the valve you have.

How’s your aorta? Any possibility of an aneurysm forming in the next 10-15 years? If it’s already dilated, I think I might consider tissue knowing another surgery is unavoidable anyway.

 

[tom in MO]

Warfarin therapy is not hard. If you have insurance and a good clinic, they will remind you if you forget to test. Get one of those weekly pill taking boxes so you only have to fill it once a week and know that you've taken your meds. Some people obsess about "the exact INR" but in reality, it doesn't have to be exact and the INR tester isn't that exact either. As long as you are above 2 and less than 4 you'll be fine.

The ticking is a matter of attitude, clocks bother me but not my heart. My heart only ticks sometimes, usually when I need reassurance that all will be well A clock ticking is death approaching, a mechanical valve ticking is affirmation of you.

You can do it.

 

[2ndvalvereplacement]

Im not sure on health of my arota, today I scheduled a vist w surgeon for Nov 8th surgery 13th. How do i find out condition on my aorta. I have the doc notes from my TEE done in Aug. The nurses leave me confused they say my choice but seem to try sway me towards mechanical. I am a recovering addict with six months clean time I have struggled with addiction for the last 18 years having many years in recovery w relapes for maybe 4-6 months then back on track for several years. this is what's caused my bacterial endocarditis originally I had a stroke in March 07 and my first valve replacement following in May 07 Thankfully I haven't had any trouble with my tissue valve until recently but I also have not been as good as a patient as I should have been with getting my check-ups done. My concerns are being 6 months clean Im older praying for this to be my last go-round with relapse. I want to do everything I can to stay clean & I'm worried that the stress of managing Warfarin I'm not the greatest at being responsible w daily meds, please no judgements I'm just now gaining the responsibilty of things but dont want to overwhelm myself. Ive worked very hard at getting my life on track so that I can be here in future have two children 9 & 13 & am divorced. My anxiety is very high, used drugs as a way to self medicate my anxiety in the past. This is why I am terrified that the ticking will drive me crazy. Do you have ro meet certain criteria for this new valve that was mentioned above?

 

[pellicle]

Hi

its always a difficult choice and there is no clean cut answer.

...The nurses leave me confused they say my choice but seem to try sway me towards mechanical.

well to be honest, despite my respect for their work I would say that if they haven't had it themselves and be through it themselves then they really just aren't in a position to comment (except of course for their familiarity with outcomes, which they only ever see a small subset of).

You don't need to be terrified of the outcomes or the decisions, and considering you've said you have anxiety I strongly recommend you consider trying your best to take active control over that (rather than simply medications).

Considering the points you raised in your first post I think you are on the money in terms of what you are taking as key points for analysis. Myself I see that you may not have a strong understanding of "I know risks of each one lifelong Coumadin " but as you say that you may not be "good at taking" that's an important point, because every bit of research available shows that "failure to take medications is the key issue in them not being effective"

To me there is nothing wrong with the choice of a tissue valve given your present situation. I've had 3 OHS already and so ahead of you. I had my third at 42, meaning you do have room for another operation yet (in my view). So I don't see a compelling case to have a mechanical.

I'm a data driven guy and while there are wonderful magical Kool-aid claims of the newer model tissue valves, I'd say that there is no evidence (based on the analysis of claims vs reality) to support that any "increase" in durability would be more than a margin (something like 15 to 30% increase and only in rare situations (like you being over 60) as much as 50% increase in durablity.

That would put you at 66 (at longest duration) when you'd need another operation.

Its hard to predict the future, but I'd ask you also to consider a possible future when health care systems in the US are under pressure and you may not have health care insurance that covers you for "what you may want" in a future surgery. Its not uncommon for people to have their employment circumstances change as they age. A mechanical valve would allow you yourself to have a key hand in managing your health (you know, taking those pills) while a tissue valve is a known quantity of a slowly decaying valve (and the slowly decaying health and fittness which goes with that).

No matter which valve you pick its entirely possible need for another surgery arises, in which case what you pick now will be of little consequence and will be replaced. But that a possibility not a certainty. So (risk analysis hat on) Mech gives you a possibility to avoid reoperatoin and a Tissue a certainty of a reoperation (of some nature).

As you've said, this is entirely your decision, so I'm only trying to work through ideas and scenarios, as you are the one who has to decide.

If you feel like someone to chat to, please contact me.

This blog post of mine about 4 years old now but none the less I believe its still "on the money"

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

 

[Superman]

Regarding your aorta, generally speaking, if your initial valve replacement was due to bicuspid aortic valve, then we are all at risk for an aortic aneurysm. The fix is a special open heart surgery where they replace the ascending aorta with a Dacron sleeve or graft.

I had a mechanical put in when I was 17, but required a second open heart at 36 due to an aneurysm. The valve was fine, but that didn’t prevent a re-op for me.

Try to keep in mind, we are many times just speaking from our own experiences, which can only tell you what happened for us, not what will happen for you.

In in terms of what to look for. When doing an echo, they normally take a measure of the aortic root. Generally 2.5 - 3.5 cm is normal (to my knowledge). I’m sure there’s a more specific standard deviation in a study somewhere. These days, intervention takes place somewhere north of 5 cm.

Regarding a history of substance abuse and relapse, perhaps you would have unique risks as Warfarin patient that folks without that challenge don’t face. Something to consider as well.

I wish your situation presented a perfect fit answer, but my gut says that whatever your choice, it’s better than the valve you have now. With my crystal ball on the fritz, it’s really hard to make a solid outcome driven recommendation.

 

[Paleowoman]

Do you have ro meet certain criteria for this new valve that was mentioned above?

The new tissue valve is the latest in the line of tissue valves made by Edwards - the valve manufacturers are always trying to improve their valves. Looking at the online information there are no particular criteria for it but ask your surgeon about it when you talk to him about valve choice.

 

[jwinter]

Like others said here, we can only offer up our own stories and you are the one to make this decision. Speak to your cardiologist and surgeon and let them give you insight also.

I have had both but am older than you are. I had a porcine tissue valve that stenosed (hope I wrote that right) a little over 4 years after replacement. I was approaching 60 (still feel 40, lol) so had the mechanical ON-X. Both have their pros and cons. All I can tell you was I am pretty wimpy and did NOT want to go through the surgery again. That.....and the waiting were the hardest part.

Talk to your docs and don't stop until you feel confident in their answers. If you are close with family discuss with them. Keep reading here for all kinds of information.

Much luck to you and let us know how it goes. Good, caring people here.

 

[MrsBray]

Hi, here's my story & observations:
I was 42 when I got my OnX mechanical aortic valve. I typically can laser-focus on a sound and not let go of it. I hardly hear it now, mostly when it's time to sleep. So I count the clicks, backwards. It's a very rare night that I get below 70 before I'm asleep. I'm sitting at my computer now, the house AC is on, the computer is running, and there are 2 ceiling fans running in the house. No TV or radio or conversation or water running, and I can only hear my ticker if I stop what I'm doing and really concentrate on listening. It took me about a year after surgery to get to that point. There's an adjustment period.

Regarding the warfarin: I took birth control for 20+years, and avoiding pregnancy was a priority so I only forgot to take a pill maybe 10 times in those years. While I was still on BC, I started taking atorvastatin. Dropped the BC and added low-dose aspirin. Then after surgery I added warfarin. I forgot a few times in the months after surgery, and got a little mixed up even with the daily pill box. So I set an alarm on my phone for a time each night to take meds. Sundays I have a rehearsal, so it's a little later. Mondays I'm really tired, so it's a little earlier.

I love my little ticker. It's mine, I don't have to share it with anyone unless I want to. I can use it as a distraction in a boring meeting, I can use it to help me sleep, I can use it to make a friend ("Hey, wanna hear my heart? " haha), I can use it as a timer (steady heartbeat of about 70). My point is, it's what you make of it. Mostly I can't hear it anymore, like living next to the highway-it's background noise. My deaf and blind old cat purrs when he feels it.

That's my story. Whichever you choose will be perfect for your story.
-Meredith

 

[Agian]

I use it to drop beats during rap battles.

 

[Agian]

Click and tock, like a clock
On the block without a glock
Rhymes with art
Play the part
Dropping beats
Inside my heart
Outside, a scar
A lunchtime star

 

[thomas999]

How one accepts the clicking noise is very individual. Some people, as described in this thread, use it as a comfort sound or a pleasant distraction, While others have a hard time accepting it. I am one of the latter who find it makes it difficult to sleep at night well in complete silence. It seems to stir up my mind where I cannot relax too easily. I need a distraction to get me to sleep at night. I use a small air cleaner on the bedside table that creates almost a white noise sound that creates a distraction. Ask me how long I have been doing this, and I'll tell you 31 years.

 

[pellicle]

Hi

How one accepts the clicking noise is very individual. Some people, as described in this thread, use it as a comfort sound or a pleasant distraction, While others have a hard time accepting it.

I don't think there is a single mech valver here who woke up post surgery and said to themselves "oh that's comforting" ... however I believe that like so many things, accepting change is a choice. Just like the path that leads to anxiety.

I believe that it may not be an active choice, but the result of making a choice where you did not reflect on and analyse the outcomes well. For instance, if you choose to go watch a TV show on the Sofa, you therefore did not go out for a walk. Its not to say that you "chose to not go for a walk" but that you chose to watch TV and therefore excluded going for the wall

I believe that much of anxiety comes from exactly these sorts of choices.

Many things which confront us in life leave us with distractions and difficulties which makes seeing the choices harder. Its tempting to say that one was forced into an action not a choice, but they are none the less there.

The thing about human behavior is that it can be massaged into something else (look for instance at the movie Cast Away. The character Chuck made enormous changes to his life over time. Those changes were forced upon him, but if you recognise that 1) you have power over your own mind 2) you want a good outcome then you can make these choices and commit to the needed actions.

Human behavior is often re-enforced by habit, so if you keep doing something for years it becomes harder to change, or even to see there is another way.

I could very easily have been one who allowed the horror **** show that followed my mech valve implant to associate that as a key reminder of that time and be forever reminded of that by its presence. I had hard times sleeping for years and it wasn't really due to the valve, but I could easily have blamed it on that.

... Ask me how long I have been doing this, and I'll tell you 31 years.

I've got friends who have long term tinnitus (not something they chose) and have solved their background hearing problems with a combination of "not focusing on it" and diversion (similar to what you mentioned) .. a common diversion is a sound generator which plays a sound which they find comforting, for instance

https://mynoise.net/NoiseMachines/campingRainNoiseGenerator.php

I hope you find a way to improve your situation ..

Best Wishes

 

[pellicle]

PS for those who liked the above there are so called "SuperGens" where you can combine two generators by tweaking (I copied) multiple (2) sounds
So combining distant thunder and light rain gave this URL:

https://mynoise.net/NoiseMachines/campingRainNoiseGenerator.php?c=0&l=7020200011172228333900&d=0

I love that site for stuff at work under noise cancelling headphones when people in open plan offices will just blabber loudly when others are attempting to focus.

 

[DachsieMom]

I had surgery at 41. Went mechanical. I don't notice the clicking, except at night, and it's actually comforting. Warfarin isn't bad at all. I have a pill box but also a free app on my phone - it rings every 30 minutes from my selected time until I press the button saying that I took the medicine. Without that, I would forget! just make sure I take it at night but I am not rigid about the time so sometimes 7 pm sometimes 10 pm.

 

[user 15848]

Hi!, like you said this is a very personal decision, and we all take different approaches, I can share with you my decision process and results after 3 years next week of AVR. I was 62 when started to drop dead in the middle of the streets and surgery was a must; was given the choice between tissue and mechanical Onx Valve; My thought was like this : If i get a tissue valve, i WILL have to face this process ALL over again in 10 +/- years that makes me 72, and my family lives till mid 80s as a norm... so, then thought about the warfarin issue, my 2 sisters are doctors and advised me to go Onx Mechanical; i am very good with Math and very Organized so managing the INR would not be big problem for me; I thought about it for 3 months even while i was sleeping; then was worry about NOISE !, i said that noise WILL drive me crazy!!, no way..., BUT, i did some extensive reading about Onx for AVR that requires low levels of Warfarin with INR between 1.5 and 2 taking a baby aspirin a day; and people i talked to said noise was not a problem; SO, i choose OnX Mechanical Valve; The noise is never an issue, i never heard the tick tick, so much that when i go for TESTS the nurses always ask what kind of valve i have, and when i say is a mechanical valve they dont believe it because they do no hear it...., For the INR i go to a lab every 2 weeks, but ALSO, there is a little machine VERY RELIABLE that you can buy, i did, and do the INR test at home; yes you have to EAT every day the same kind of thing, but once you learn to manage the INR and food is not a problem. THIS is my experience, and other people may have other; all is valuable. One thing i want to say is that what really gave me peace during the thinking process, was the people in this FORUM.... every body means you well, and every body shares the best experience the had, I wish you to choose what is best for you, and that all goes well, looking forward to hear from you after surgery !