I've crossed the line into severe and need to make a decision

[Chuck C]

Excellent thread Chuck C and contributors, very informative.

To add on why certain tests.
My sept 2020 echo indicated my 10 yr old prosthetic bio aortic valve is failing and an aortic redo/replacement is needed soon, .456 was my echo result. Interventionist upon revue of echo scheduled a CT scan.
My dec 2020 CT scan with contrast, determined that an OHS procedure is less risk vs. a TAVI procedure.
Am meeting with OHS surgeon next week. By my understanding, an angiogram will next be scheduled to determine condition of arteries.
The CT scan with contrast also picked up a cyst on pancreas, so i will be scheduled for an MRI for pancreas and a follow up with a different surgical team
Two surgeries now seem likely for me and soon.

Thanks for sharing your story. The fact that your biological valve lasted 10 years brings up another issue regarding valve choice. (If my math is right you had your first AVR at about age 57, is that right?) This is the reason that I am leaning towards a mechanical valve. I've been told, and the literature seems to support, that at my age of 53, I can expect a biological valve to last about 10 years. The Edwards Resilia valve gives some hope that it may last longer, but with 5 years of human data, this is certainly not proven. So, if I go with the current expectations of valve life for biological valves for folks in my age bracket- I would be looking at valve procedure #2 at about age 63 if my replacement valve is a biological valve. Then, at age 63, I either face another OHS or TAVR. My cardiologist said that the hope at that point would be to avoid OHS and go TAVR and the hope would be that the TAVR would last 15 years, taking me to 78. Then we would probably do valve operation # 3 as a TAVR in TAVR at 78. There is a lot that I don't like about that scenario personally. 1) Ten years is a short period of time to have to face valve surgery again and there are plenty of folks in my age range for whom their biological valves are only lasting 7-8 years. 2) I have some real reservations about TAVR for young individuals, and I think anyone under 70 is young in the valve replacement world. A high risk 85 year old, I think TAVR makes all the sense in the world, with the risks posed by OHS. But, someone in their 50s and 60s, I really have to question TAVR, especially given that we really don't have long term data on TAVR, and certainly limited data for TAVR in young active people. Also, the outcome studies comparing SAVR to TAVR, while arguably having better short term outcomes for TAVR at year 1, seem to even up after about 3 years and break in favor of SAVR by year 5 in the most recent publications. 3) There is very limited data on valve in valve in valve: that is to say, TAVR as a valve in valve following the biological valve, followed by TAVR in TAVR. That is getting to the point where there is a lot of junk in there an the AVA is not likely to be very big at that point. My cardiologist says that by the time that I am that age I will likely not need to have nearly as much cardiac output through the valve to support my activities. Well, my dad is 78 and plays tennis hard 4 days per week. My mom at 78 walks 5 miles per day and sometimes goes swimming. I plan to be active at 78, like my parents, and I don't like the idea of having a very small valve opening with 3 artificial valves sharing space in the annulus. And, keep in mind this scenario of estimating the age for each procedure is assuming the first TAVR gets me 15 years. This would be a far from certain assumption. I think that a more realistic estimate might be 10 years and one could make the case for even less. Using 10 years as the estimate for how long the first TAVR biological valve will last me, the same as the estimate for the life expectancy for my first biological valve, and now I am looking at surgery #3, the TAVR in TAVR, at age 73. That would seem to be not the best place to be at age 73. We are really on uncharted territory when we talk about valve in valve in valve.
So, it really makes me look hard at the option of going with a mechanical valve, and hoping that this will be the last procedure that I will ever need.

Sorry for taking a bit of a trip down a rabbit hole with valve choice, but this is clearly something that I must also deal with at this time as I weigh my options with my cardiologist and surgeon. When I hear stories like yours, about how long folks are getting out of their biological valves, especially those in my age range, it is of great help to me as we weigh valve choice. So, thanks again for sharing your story.

I wish you the best of luck both of your surgeries. It is good that they found the cyst on your pancreas and can deal with that now. Please keep us posted on your recovery.

 

[Chuck C]

" Like you, I thought I needed an "experienced" surgeon. When I asked my surgeon how many valve replacements he did a year, he laughed and said he didn't know, because he does so many. When I asked him how many were unsuccessful, he said a few a year, but those cases had severe complications and/or very old patients and didn't apply to me, an fat man aged 55. More important than your surgeon is the team they work with. Choose a hospital you trust with depth in their surgeons, cardiologists, nurses and cardiac rehabilitation. "

I totally agree Tom. I want to have my procedure done at a facility which does hundreds of them per year, not dozens. I want a surgeon who has done thousands of my procedure, not hundreds. After doing some surgeon shopping over the past 18 months, I have great confidence in the surgeon and team that I am now planning to go with. He is in surgery every day that he's in the office, so when I consult with him, they tell me in advance that he might potentially be late or even very late to the consultation, if they happen to run into complications and the surgery takes longer than planned. I want to be under the care of a surgeon with that much experience and I'm happy to be on standby as I wait for the consultations.

 

[dick0236]

" Like you, I thought I needed an "experienced" surgeon.

I totally agree Tom. I want to have my procedure done at a facility which does hundreds of them per year, not dozens. I want a surgeon who has done thousands of my procedure, not hundreds.

My surgery was at a hospital that was doing only a couple OHS per week and was one of the two hospitals in Kentucky that was permitted to do that surgery in those early years. One of my surgeons was in his last year of residency at that hospital although he went on to be a Chief of Staff at Baylor University hospital later in his career...........neither the hospital nor the surgeon had a ton of experience with OHS, and yet I've made it successfully for over 53 years. Obviously, the hospital and surgeon are very important but they only do a small part.....the rest is up to you.

 

[pellicle]

Obviously, the hospital and surgeon are very important but they only do a small part

yes, its like the Formula 1 team ... the drivers have the biggest egos, but without the team they're not going anywhere, so to somewhat support this:
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/the-surgical-team
and this doesn't touch on the ICU team

 

[Luckyguy17]

This is the reason that I am leaning towards a mechanical valve. I've been told, and the literature seems to support, that at my age of 53, I can expect a biological valve to last about 10 years. T

Chuck C, i agree with your leaning to a mechanical valve at your age and activity level. The Choice of Bio vs Mech valve, was a tough decision for me in 2010 at 56 years of age.
So my bio valve is just shy of 11 years old today and there was some hope in 2010 that the St-Jude bio could possibly do 20+ years. It was also thought in 2010 that TAV, might be the option for a redo, if redo required. A recent CT scan has provided info that TAV now seems a higher risk option for me. Surgeon will justify OHS vs TAV in our meeting this coming week.
it also seems that TAVR is more expensive than OHS (surprise to me) and that TAV is not commonly done at my hospital for patients under 70.

 

[Chuck C]

"My surgery was at a hospital that was doing only a couple OHS per week and was one of the two hospitals in Kentucky that was permitted to do that surgery in those early years"

Dick, they had to practice on somebody in order to establish all of the experience!

Your 53 year strong mechanical valve is such an encouragement! Despite being in the early years of valve surgery, your team clearly was very competent and you have done an excellent job in taking care of your valve. We can all learn so much from you!

 

[Chuck C]

"So my bio valve is just shy of 11 years old today and there was some hope in 2010 that the St-Jude bio could possibly do 20+ "

I feel like the new "hope" valve is the Edwards Resilia" If I somehow knew that it would go 20 years, this would be my valve of choice. But, of course, one can't possibly know that and I have to go with the best information that I have, which would suggest that a biological valve will likely last me about 10 years, unless there is evidence to the contrary.

 

[gpr100rs]

Regarding valve choice, etc. you might want to watch:
A Department of Cardiovascular Surgery Grand Rounds Conference from the Icahn School of Medicine at Mount Sinai presented by Dr. Anelechi (Ani) Anyanwu - a no BS presentation. I will be undergoing AVR likely within the next 3 months. I am 62 and want to get back to playing squash. While INR management is claimed to be "easy" Dr. Anyanwu's talk makes clear the heightened risk of being on blood thinners and the thrombogenic risks posed by mechanical valves. Biologic valves don't last as long and, given my age, will likely require a redo - TAVR vs OHS - when I am in my mid-70's. So, mechanical valve = bleed (i.e., sudden death)- ticking - thrombosis - blood thinners vs biologic valve = 10-15 yr valve life (with gradual breakdown and potential years of decline in function) - redo surgery - possible blood thinner (yes, there's no guarantee you won't need a blood thinner with a biologic valve). I am wrestling with these issue, but will likley rely heavily on recommendation by Dr. Roselli at Clevland Clinic. Trust your surgeon on timing of surgery and valve recommendation. Sounds like you're in good hands.

 

[Superman]

Just remember that most of the risks with anticoagulants are brought about by mismanagement. If you are the type to constantly miss appointments, miss doses of other meds you take, etc - it may not be for you. And that’s fine.

Also- we can do everything perfectly and bad stuff can still happen.

That said - I’m really not a fan of these compilation of studies presentations where they focus on events but not deeper dives in what led to them (this patient consistently missed doses and didn’t get checked regularly). Especially made by surgeons who have never had to live in the meds in the first place.

I tend to defer to my 30 plus years of first hand experience and others on this board who have lived even longer with it.

 

[dick0236]

Regarding valve choice, etc. you might want to watch:
A Department of Cardiovascular Surgery Grand Rounds Conference from the Icahn School of Medicine at Mount Sinai presented by Dr. Anelechi (Ani) Anyanwu - a no BS presentation. I will be undergoing AVR likely within the next 3 months. I am 62 and want to get back to playing squash. While INR management is claimed to be "easy" Dr. Anyanwu's talk makes clear the heightened risk of being on blood thinners and the thrombogenic risks posed by mechanical valves. Biologic valves don't last as long and, given my age, will likely require a redo - TAVR vs OHS - when I am in my mid-70's. So, mechanical valve = bleed (i.e., sudden death)- ticking - thrombosis - blood thinners vs biologic valve = 10-15 yr valve life (with gradual breakdown and potential years of decline in function) - redo surgery - possible blood thinner (yes, there's no guarantee you won't need a blood thinner with a biologic valve). I am wrestling with these issue, but will likley rely heavily on recommendation by Dr. Roselli at Clevland Clinic. Trust your surgeon on timing of surgery and valve recommendation. Sounds like you're in good hands.

 

[newarrior]

I can't believe that people would be sloppy about their medication but whatever I mean people are sloppy about everything their diet their exercise their meditation practice

 

[dick0236]

I am 62 and want to get back to playing squash. While INR management is claimed to be "easy" Dr. Anyanwu's talk makes clear the heightened risk of being on blood thinners and the thrombogenic risks posed by mechanical valves. Biologic valves don't last as long and, given my age, will likely require a redo - TAVR vs OHS - when I am in my mid-70's. So, mechanical valve = bleed (i.e., sudden death)- ticking - thrombosis - blood thinners vs biologic valve = 10-15 yr valve life (with gradual breakdown and potential years of decline in function) - redo surgery - possible blood thinner (yes, there's no guarantee you won't need a blood thinner with a biologic valve).

You seem to have done a thorough search of your options and are coming to an educated decision. I do take issue with some of the findings of your inserted presentation but I am only a sample of
one......albeit one with a lot of experience with ACT. My opinion of being on warfarin is if you......take the pill as prescribed, test routinely and don't run with scissors....you can successfully deal with warfarin. Following a few precautions will mitigate the bad stuff. However, you are at an age where from what I understand, either choice is a good choice.

ps: For most, the "ticking sound" goes away. You can imagine what mine sounded like.....it is a ping-pong ball bouncing around in a metal cage.......but I have not heard it for years and years.

I hope you have an uneventful surgery and a fast recovery!

 

[BillDaThrill]

Regarding valve choice, etc. you might want to watch:
A Department of Cardiovascular Surgery Grand Rounds Conference from the Icahn School of Medicine at Mount Sinai presented by Dr. Anelechi (Ani) Anyanwu - a no BS presentation. I will be undergoing AVR likely within the next 3 months. I am 62 and want to get back to playing squash. While INR management is claimed to be "easy" Dr. Anyanwu's talk makes clear the heightened risk of being on blood thinners and the thrombogenic risks posed by mechanical valves. Biologic valves don't last as long and, given my age, will likely require a redo - TAVR vs OHS - when I am in my mid-70's. So, mechanical valve = bleed (i.e., sudden death)- ticking - thrombosis - blood thinners vs biologic valve = 10-15 yr valve life (with gradual breakdown and potential years of decline in function) - redo surgery - possible blood thinner (yes, there's no guarantee you won't need a blood thinner with a biologic valve). I am wrestling with these issue, but will likley rely heavily on recommendation by Dr. Roselli at Clevland Clinic. Trust your surgeon on timing of surgery and valve recommendation. Sounds like you're in good hands.

Pretty sobering data presented on that video but appreciate the 'no BS' perspective. Thanks for sharing.

 

[tom in MO]

Regarding valve choice, etc. you might want to watch:
A Department of Cardiovascular Surgery Grand Rounds Conference from the Icahn School of Medicine at Mount Sinai presented by Dr. Anelechi (Ani) Anyanwu - a no BS presentation. I will be undergoing AVR likely within the next 3 months. I am 62 and want to get back to playing squash. While INR management is claimed to be "easy" Dr. Anyanwu's talk makes clear the heightened risk of being on blood thinners and the thrombogenic risks posed by mechanical valves. Biologic valves don't last as long and, given my age, will likely require a redo - TAVR vs OHS - when I am in my mid-70's. So, mechanical valve = bleed (i.e., sudden death)- ticking - thrombosis - blood thinners vs biologic valve = 10-15 yr valve life (with gradual breakdown and potential years of decline in function) - redo surgery - possible blood thinner (yes, there's no guarantee you won't need a blood thinner with a biologic valve). I am wrestling with these issue, but will likley rely heavily on recommendation by Dr. Roselli at Clevland Clinic. Trust your surgeon on timing of surgery and valve recommendation. Sounds like you're in good hands.

The best person to know when your valve needs to be replaced is a cardiologist not a surgeon.

Surgeons do not prescribe warfarin or manage patients on warfarin, cardiologists, internists and general practicioners do. They are the ones to believe about warfarin.

With my first surgery, 6" of colon removed, I learned that surgeons try to solve everything with a knife. You need opinions from doctors who are not surgeons.

As a former squash player, at age 62, with a mechanical valve on warfarin, what will stop you from playing squash is your 62yo skeletomuscular system and diseases such as arthritis. It won't be the warfarin or a mechanical valve. If you can play squash at 72, your deteriorating tissue valve could be a reason for your bad squash game.

 

[pellicle]

Pretty sobering data presented on that video but appreciate the 'no BS' perspective. Thanks for sharing.

but Bill, keep in mind that the data "on the whole" does not support this, it appears its a presentation of worst cases.

Then there is the fact that something like 50% of the population on warfarin are failing in their taking it

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068890/

as I often say, if you want to personally actively take a hand in your own health then get a mechanical valve (unless you are warfarin contraindicated) and manage your INR well.

If you don't manage it well you will probably eventually fall prey to this:

Note key points.

if you're an idiot do what ever the surgeon suggests as they will be taking all other factors into account.

 

[BillDaThrill]

Pellicle - that chart from Sweden about the persistence of using important meds, post-stroke, is mind-blowing (or better yet 'heart-stopping'). Wish the doctor/presenter would have noted that instead of his nightmarish (ALL SURGICAL OPTIONS ARE BAD) presentation. Thanks for talking me down off the ledge.

 

[Dodger Fan]

Howdy neighbor. I'm sure you'll make the right call.

Here's my input: I was pretty "asymptomatic" myself. I ran a half marathon in November 2015 and had AVR in January 2016. Dr. Tyner told my wife I had a "drop dead valve". Sometimes we think we are asymptomatic because the symptoms come on so gradually.

 

[Chuck C]

Pellicle - that chart from Sweden about the persistence of using important meds, post-stroke, is mind-blowing (or better yet 'heart-stopping'). Wish the doctor/presenter would have noted that instead of his nightmarish (ALL SURGICAL OPTIONS ARE BAD) presentation. Thanks for talking me down off the ledge.

Bill, so glad that you are back off the ledge and with us once again! I have watched that gloom and doom video twice- once about 3 weeks ago and again yesterday. I have many issues with his presentation of the data. He makes a terrible case against mechanical valves.. His biggest arguments are anecdotal messages he clicked and pasted from a forum, not from a study or survey. He cherry picks horror stories, without giving any success stories, like the many people here successfully managing their mechanical valves 30-50+ years.
He cites a woman whose husband got PTSD from the clicking of mechanical. He later committed suicide.
Another one wears gloves all day even in the house for fear of cuts.
Another one is afraid to drive in their car for fear of crashing.
Another woman is afraid to wear a bikini because the warfarin gives her bruises all over her body.
And he says several people say it interferes with their sex life.
Is it any wonder that folks like JannerJohn get the kind of misleading info that he had?
Not one counter anecdote of individuals successfully managing their mechanical valves and warfarin.

So, to the mechanical valve folks, how accurate is this doctor in his presentation? Is it true that you:
Need to wear gloves around the house all day?
Are afraid to drive for fear of crashing?
Are afraid to wear your bikini at the beach due to bruising? (yes that's a softball pitch, let it rip!)
Have PTSD and suicidal thoughts from the ticking?
Have a limp noodle?

Here I was leaning mechanical but this sure sounds like a difficult way of life.

 

[JannerJohn]

Oh my god I really really wish I had not watched that video. Having a massive anxiety / panic attack ;-(

 

[Superman]

So, to the mechanical valve folks, how accurate is this doctor in his presentation? Is it true that you:
Need to wear gloves around the house all day?
Are afraid to drive for fear of crashing?
Are afraid to wear your bikini at the beach due to bruising? (yes that's a softball pitch, let it rip!)
Have PTSD and suicidal thoughts from the ticking?
Have a limp noodle?

Well, based on your description, this doesn’t sound like a medical presentation, but rather a personal vendetta.

I don’t wear gloves unless it’s cold. I cook. Carve turkeys. Saw wood. Work on cars. You name it. I’ve even sliced my finger reaching in the sink to wash the Turkey knife. I used a butterfly bandage and it healed.

Love to drive. We only do road trips, no flying due to the cost of seven plane tickets. I’ve driven all over the continental US. At night. During the day. Big cities. Middle of nowhere. I don’t think about my meds.

I don’t wear a bikini at the beach because of their fears, not mine. But seriously, if that person has bruises all over their body constantly, I would be more afraid for their domestic situation than their medication. That said, I do get the occasional mystery bruise. Probably tougher mentally for some than others. Plenty of people won’t go to the beach because of body insecurity.

No to PTSD or suicidal thoughts. The ticking has been an occasional conversation starter. And a source of amusement at times. I believe I’ve mentioned losing my tooth fairy job due to noise.

As far as the last question, I’ve managed to work things out at least five times. . If I had to guess, the age at which most men have this surgery, coupled with the general body trauma, that’s an after; therefore because fallacy. It’s not like anyone is standing at attention in ICU, so to speak. As of this week, everything is still a-okay!

I’m a thirty plus year warfarin addict just living my life.