Anyone had 3 valve replacement surgeries?

[Superman]

I’m just a mere two surgeries in vs the requisite three to be in this club. However, having had two, my choice is/was to make whatever choice necessary to minimize the risk of a third.

My first was at 17 and the only choice given at that time was a St. Jude mechanical valve. I was under a one and done impression. However the link between BAV and the risk of an aortic aneurysm wasn’t mentioned.

So 19 years later my second surgery was for an aneurysm repair. The valve itself was still fine. For that reason I stuck with St. Jude. It’s been nearly 13 years since that surgery. I’m still in my late late 40’s (barely).

I test my INR every week or bi-weekly at home. The only thoughts I give to diet are health related and not valve related. The ticking is a reality, but count me in the 75% or whatever that it doesn’t bother. I’ve been ticking for nearly 32 years now. Pretty much all I know.

In the end, everyone has to make the best choice that they can live with. I also don’t know that I’ve ever witness a poster say, “My surgeon thinks I’m an *****, but I’m doing this anyway…”. Typically folks shop around until they find a medical team that validates their choices, then we all say, “My surgeon says I made the best choice!” Or the surgeons are good at telling us what we want hear as long as it does no harm and doesn’t add to the anxiety of the circumstances.

 

[carolinemc]

Those study results don't take into account how many respondents would have had sleeping problems or insomnia w/o the valve. It's easy to blame the valve when you can't get to sleep because of anxiety about life.

No surgeon will tell you that your choice was bad. I was the same age as you and chose mechanical my surgeon told me my choice was the best...one and done. Your second concern about mechanical valves is a false one. There are no dietary restrictions when taking warfarin. That's an old outdated concept. In the 21st century, we dose the diet not diet the dose

My troubles with sleep is Diabetes related, stress and depression. And I agree, the choices of valve and surgery has no bearing on sleeping patterns. Thanks for clearing up the issues of diet and warfarin.

 

[carolinemc]

From the report...

On average, the patients were 60 years old and 76% men. Nearly a fourth reported the valve sound being disruptive during sleep, and 9% reported daytime disruptions. Over half of the patients reported the sound being too often and could be heard by others, but only 16% said it created an uneasy feeling. Additionally, 28% said they would replace their valve with a soundless prosthetic valve if given the opportunity.

This speaks for itself.

BTW, when I also told my surgeon I wanted to use a breast plate instead of wire to hold the split breast bones back together... he made very clear to me that decision was BAD... just saying. Maybe New York City doctors are different from your doctors. They clearly will tell you if you chose something they don't agree with. It's a New York thing I suppose.

Studys are not a very good source for information and is usually inaccurate at best. Surgeons go by experiences.

 

[Superman]

Studys are not a very good source for information and is usually inaccurate at best. Surgeons go by experiences.

Studies are a great source of information if conducted with proper controls.

I’m guessing you’re referring to his citing of a survey, which I whole heartedly agree with you. Surveys can be set up and manipulated to say just about anything a surveyor wants to say if the questions are framed properly. My work has used employee surveys to tell us that based on the way we answered their questions, we wanted this more costly benefits package with more out of pocket expenses and less coverage. I was like, “I really don’t remember saying that at all!”

Taking just the point about, “If given the opportunity, would you choose different?” I would answer yes as well. But that’s with the understanding that since a better alternative doesn’t exist for me, I likely will never have the opportunity to choose different. So then I get lumped into, “He hates his mechanical valve!” Just based on how I interpret the question.

 

[Daniel758]

Studys are not a very good source for information and is usually inaccurate at best. Surgeons go by experiences.

100% agree, anyone can find a study that validates their viewpoint (Which I see over and over on this forum).

TO ANYONE READING THIS FORUM LOOKING FOR ADVICE ON WHICH VALVE TO CHOOSE:

A surgeon (and/or cardiologist) with years of real world experience combined with years and years of education, the ability to evaluate your entire medical history, your unique medical situation (maybe you have other conditions or family history that would complicate a receiving a mechanical or tissue valve), your personal preferences and desired lifestyle after surgery, your desire or ability to follow anticoagulation routines now or in the future, knowledge of cutting edge medicine and how it could benefit you... and then backed up by a world class support system/facility... will be much better able to advise you on which valve is best for you and your unique situation than some random guy/gal on an internet forum who, no matter how many old studies they drag up on Google, is in no way qualified or equipped to do any of the above.

It's your life people, be smart about it.


My advice:

1. Find the best cardiologist and surgeon you can find and listen to their advice.

2. Prepare for surgery the best you can (for both before and after and what to expect). THIS FORUM IS EXCELLENT FOR THIS!

3. Go to the best high volume valve surgery center/hospital you can.

4. Spend time with people that matter to you.


What not to do:

1. Waste time going down internet rabbit holes that will stress you out when you could be doing something productive, like preparing for surgery or spending time with loved ones.

2. Take advice from unqualified internet people over the advice of your doctors and surgeons.

3. Let unqualified internet people sow distrust between yourself and your doctors and surgeons.

 

[tom in MO]

'Misunderstanding as there are no restrictions except' ... this and that... ok

Mayo Clinc: Warfarin diet: What foods should I avoid?
https://www.mayoclinic.org/diseases-conditions/thrombophlebitis/expert-answers/warfarin/faq-20058443

The Mayo Clinic article is wrong. I eat all the foods listed and drink cranberry juice, grapefruit juice and alcohol. I don't keep my vit K intake consistent other than I eat a varied diet of many colors. That's what I was taught in cardiac rehab and I have no problems with my INR and have been on a consistent dose for a few years.

When it comes to alcohol, the experiences of the members here will belie that Mayo warning. If you drink so much and fall down and injure yourself so you start bleeding, that is the only time warfarin doesn't mix with alcohol.

From my perspective your New York doctors were in-line with the stereotype New Yorker ripoff. They assured themselves by giving you a tissue valve at 53 that'd they'd get at least one and maybe two more operations out of you. By the way, my parents and most of my family are New Yorkers, my uncle was a NYC cop rising to detective. They schooled me well on scams, cons and rip-offs.

With tissue or mechanical, the key thing is you are alive but would have been dead w/o the operation.

 

[Superman]

The Mayo Clinic article is wrong. I eat all the foods listed and drink cranberry juice, grapefruit juice and alcohol. I don't keep my vit K intake consistent other than I eat a varied diet of many colors. That's what I was taught in cardiac rehab and I have no problems with my INR and have been on a consistent dose for a few years.

Agreed. 32 years on warfarin and I eat a more varied diet that anyone in my house. Anything I don’t eat or drink is either for other health reasons or because I don’t like it.

The only time I run in to INR challenges is if I’m put on a short course of some prescription medication or other. It’s manageable, I just need to test more frequently and adjust my dose accordingly.

 

[vitdoc]

I have a friend who is a doctor. He is well enough off but he needs to get the best deal on things that he buys. So he will scour the internet looking for deals and spend countless time "researching" his potential purchase. Then he finally pulls the trigger. Not infrequently after he buys the item he finds a better deal.
He then tries to get the seller to adjust the price. I roll my eyes when he tells me these stories.

Deciding on a valve , mechanical vs tissue is sort of like that. You can scour the internet and find all sorts of information and try to make the best decision from this data. But ultimately the answer in the long run is still going to be determined by how you do. If you get a tissue valve and it lasts less than 10 years you would look back and regret not having a mechanical. If you where bothered by the clicking of a mechanical you would regret not getting a tissue.
I think you have to think of the worst situation that you want to avoid. If it is the fear of clicking and using warfarin then tissue. If you really don't want another procedure mechanical. You can go round and round thinking about it and drive yourself crazy.

The Paxton story is just lawyer ******** that is added to every malpractice law suit. I don't think there would have been any difference in his outcome if he had a different valve.

Medicine is not a true science. Outcomes are not reproducible. We are governed by statistics which are heavily dependent on who and where the data is accumulated. The clicking valve study that was mentioned if repeated elsewhere with different questions might have markedly different results.
Maybe on this forum everyone who has a mechanical valve can chime in and tell us how they feel about the sound. As I mentioned for me it is inconsequential.

At this point you can just flip a coin to decide if you have not come to a conclusion.
Good luck.

 

[Chuck C]

I think you have to think of the worst situation that you want to avoid. If it is the fear of clicking and using warfarin then tissue. If you really don't want another procedure mechanical

There is yet a third option for the young patient. Find a surgeon, they exist, who will tell you that, the new tissue valves will last 30 to 45 years. That way you can go tissue and get the best of both worlds. No warfarin. No clicking. And, even though you have a tissue valve, you never have to get a reoperation in your lifetime, in the little imaginary world that he painted for you. Evidence smevidence. If a surgeon says so, it must be true.

 

[TomM]

I had 4 OHSs, 3 AVRs
1990: valvotomy (I think - I should really find out)
1999: homograft
2004: homograft
2020: mechanical valve including ascending aorta replacement and pacemaker insertion

I was relatively fit going into the surgery in 2020 that I think is very beneficial.

The noise of the valve itself does not bother me. I have what the cardiologist calls a fistula between two chambers of the heart after the 4th surgery that causes a loud thumping from my heart. I sleep fairly well though.

I was lucky to get through the 4th surgery. Having said that, now that I'm still alive, I have no regrets for choosing a second homograft in 2004. I'm 40 years old now. I hope you find this helpful

 

[Daniel758]

There is yet a third option for the young patient. Find a surgeon, they exist, who will tell you that, the new tissue valves will last 30 to 45 years. That way you can go tissue and get the best of both worlds. No warfarin. No clicking. And, even though you have a tissue valve, you never have to get a reoperation in your lifetime, in the little imaginary world that he painted for you. Evidence smevidence. If a surgeon says so, it must be true.

 

[Canton]

The Paxton story is just lawyer ******** that is added to every malpractice law suit. I don't think there would have been any difference in his outcome if he had a different valve.

You're right, because it was not a failure of the value but the procedure itself on installing it which was botched.

 

[Earthsciencerocks]

.

 

[Earthsciencerocks]

There is yet a third option for the young patient. Find a surgeon, they exist, who will tell you that, the new tissue valves will last 30 to 45 years. That way you can go tissue and get the best of both worlds. No warfarin. No clicking. And, even though you have a tissue valve, you never have to get a reoperation in your lifetime, in the little imaginary world that he painted for you. Evidence smevidence. If a surgeon says so, it must be true.

I want to live in that world!!! Alas, smevidence does matter! Thanks!

 

[vitdoc]

1990: valvotomy (I think - I should really find out)
1999: homograft
2004: homograft
2020: mechanical valve including ascending aorta replacement and pacemaker insertion

I am curious what was the decision making process in 2004 when you had a homograft last only 5 years just prior. It looks like you lucked out going 16 years but you could easily have just gone another 5. Also you ended up with a pacemaker and this fistula that you mentioned.
The only positive maybe that you didn't need aortic surgery in 2004 and you still would have had another surgery whether you had a mechanical or homograft in 2004. But if that valve only lasted another 5 years you might have not needed the aortic surgery and you would have faced perhaps a 5th procedure. So I think that the decision in 2004 for another homograft in a young person was a bit odd and was only perhaps verified by the unlikely 16 year life the valve had.

 

[pellicle]

I am curious what was the decision making process in 2004 when you had a homograft last only 5 years just prior

Dunno, but from the institution that did mine
https://pubmed.ncbi.nlm.nih.gov/11380096/

For all cryopreserved valves, at 15 years, the freedom was​

• 47% (0-20-year-old patients at operation),
• 85% (21-40 years),
• 81% (41-60 years) and
• 94% (>60 years).

Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement​

​

So based on that reading it might just have been statistics working against him (and nobody likes to say surgical error)

This is why despite my personal success I prefer to suggest off the shelf products rather than harvested parts because the potential for issues would seem smaller.

That's part of what I don't like about the Ross.

 

[pellicle]

If a surgeon says so, it must be true.

well they wouldn't lie mate ...

 

[pellicle]

I had 4 OHSs, 3 AVRs
1990: valvotomy (I think - I should really find out)
...

Hey Tom ... just wondering, how old you are (so I can understand how to place your data with respect to other data. That's one of the reasons for the bio details. Knowing context helps (I've not got my specific date of birth in mine, but just enough to work out my age)

Thanks

 

[TomM]

I am curious what was the decision making process in 2004 when you had a homograft last only 5 years just prior. It looks like you lucked out going 16 years but you could easily have just gone another 5. Also you ended up with a pacemaker and this fistula that you mentioned.
The only positive maybe that you didn't need aortic surgery in 2004 and you still would have had another surgery whether you had a mechanical or homograft in 2004. But if that valve only lasted another 5 years you might have not needed the aortic surgery and you would have faced perhaps a 5th procedure. So I think that the decision in 2004 for another homograft in a young person was a bit odd and was only perhaps verified by the unlikely 16 year life the valve had.

It was basically a lifestyle choice. I was 22 at the time and wanted for playing contact sports and to socialize without impediment. I played Gaelic games and though not at a high level I really enjoyed playing. I was given the option of a Ross procedure, homograft or mechanical valve. Information on these was not as readily available to me back in 2004 as it is now. I had no internet at home when making the decision. I ruled out the Ross procedure though this is what the cardiac team was pushing for and for the lifestyle reasons above I chose another homograft. I guess to put it another way I was young and had great intentions of "sowing my wild oats" though with relatively only minor success as it turned out . I was aware of the consequences of the decision. I guess if the cardiac team had put more emphasis on a mechanical valve rather than the Ross procedure I would have considered this option and went with the mechanical valve. In fact, now that I think back on it, I was left to make the decision up until the morning of the procedure. When I didn't choose the Ross procedure the surgery was postponed until later that month. The reasoning they gave was another patient was in need of surgery.

@pellicle I'm 40 years old now.

 

[pellicle]

I'm 40 years old now. I

oops ... missed this pardon me (skimming quickly)

I had 4 OHSs, 3 AVRs
1990: valvotomy (I think - I should really find out)

Ok, so 8 years old. That's about the same age as me when I had my valvotomy (I was 10), so I think you have the right term, but always good to check Homografts were once called allografts ...

1999: homograft

and 17 here whereas I made it to 28 for mine ...

2004: homograft

and 22 here. So that sort of feeds into my reading of the stats and my above conjecture

2020: mechanical valve including ascending aorta replacement and pacemaker insertion

38 here and my mech was put in about 20 years after my homograft, which is a similar run to your second. Did the aneurysm drive the reoperation?

After 4 Open Heart surgeries I think you got off lightly on that. I was personally worried that I'd wake up with a pacemaker (but said nothing because I didn't want to further terrify my wife).

Personally I think you made a good call on all counts and its bad luck you got a dud on your first homograft. I seem to recall reading that younger than 20yo for homografts had a lower duration than mid to late 20's.

As someone who had a similar history its interesting to compare notes.

You missed out on the infection (unless you simply haven't reported it yet {or have and I missed that too ;-) }) and some of the other issues so I'd say its neck and neck.

I hope neither of us need reoperation.

Best Wishes