Severe Aortic Regurgitation Leading to Second Surgery

[skier]

that's actually good. Upfront your age is not in your Bio and your age makes a big difference in the clarity of decision choices.

Now my advice goes like this:

• take a deep breath and not worry too much about any details, knowing this whole interplay of stuff is what they do, not what you do
• take time to objectively look at the choices that are before you and inform yourself in a plain and simple way, you now have two choices:
  1. bio-prostheses
  2. mechanical prostheses
• your job now is to evaluate these two choices and to consider your age group, your personality type and then read posts here and consider things in a critical thinking manner. I also like this guide as it also represents what we teach at my university (not that one)
• weed out what is fluff and what at is evidence based substantiate-able fact

Soon all this will be in your rear view mirror, and not only will the year pass, in all likelihood tens of years will pass. My second surgery was in 1992 (so yes twenty nine years ago) and what happened then is more or less a dim memory. So this too will become that for you eventually. The questions that should be on your mind are:

• do I want this to become a serial event or not?
• can I be a little bit organised and take a hand in managing my own health?

I phrase those questions in the certainty of bio-prosthetic SVD driving replacement (depending on your age, which I don't know) and the other certainty of needing to manage your INR. One is out of your hands and the other is "the ball is in your court".

That at its nub is the choice that the patient must understand and decide upon.

Best Wishes

Thanks for that and all your many other posts I've read on valve choice.

I'm 55 and leaning toward a mechanical valve. I was on coumadin for three months after my first surgery and didn't mind it. I had no issues taking it and maintaining my INR, and I would undoubtedly do home monitoring long-term.

I'd hate the idea of needing a third surgery down the road and not sure I should bet on TAVR being an option.

Skiing is the issue, and I'd probably need to dial it back if I go mechanical. I will not stop as I've been skiing 30+ days/year my whole life. I also mountain bike, but not aggressively, as I don't particularly like falling on rocks. I rarely fall doing either. I'm getting too old to ski as I did in my youth, but being able to do so is an enormous motivator in maintaining my fitness.

It will be interesting to see what my surgeon says about valve choice. He's an athlete and a snowboarder. I do have faith in him despite his poor choice of equipment on the slopes.

 

[pellicle]

I do have faith in him despite his poor choice of equipment on the slopes.

Well I can only agree, it'd be bloody difficult snowboarding up hills and along flats too
https://cjeastwd.blogspot.com/2010/02/bad-skiing.html

 

[pellicle]

oh, and @skier, just a small anecdote I had a girlfriend once upon a time who was often deriding younger women who got pregnant and kept the baby rather than focus on their career. She thought she was pregnant at one stage and after a few days of thought decided she would keep the baby if she was (I supported this).

The moral of this story is that you just never know what you'll do when the time comes despite all the positioning before hand "on what you'd do".

 

[BillDaThrill]

Skier, sounds like you are under excellent care. Guessing you are skiing in CO with the chart/elevations you showed. I had my OHS/valve replacement in June and sadly only have taken two runs since then (skinning up both times). But that was due to lack of snow in NM, not courage. I got a mechanical valve and you're right to expect to dial it back a bit. 13 years ago, when I first learned I had this condition and surgery was in my future, I asked a cardiologist if I could continue skiing post-surgery. He said 'yes' and asked 'do you ski the trees?". I said 'yes' and he said "now you will ski them slower'. This was a relief after my first physician said my days of skiing and mtn biking were over. Anyway, you'll get a variety of professional/unprofessional opinions on what you can do - my advice is that you're not going to go thru all these preps, surgery, and recovery to abandon what you love. Don't sell that mtn bike or your planks.

 

[Unicusp]

Skier, sounds like you are under excellent care. Guessing you are skiing in CO with the chart/elevations you showed. I had my OHS/valve replacement in June and sadly only have taken two runs since then (skinning up both times). But that was due to lack of snow in NM, not courage. I got a mechanical valve and you're right to expect to dial it back a bit. 13 years ago, when I first learned I had this condition and surgery was in my future, I asked a cardiologist if I could continue skiing post-surgery. He said 'yes' and asked 'do you ski the trees?". I said 'yes' and he said "now you will ski them slower'. This was a relief after my first physician said my days of skiing and mtn biking were over. Anyway, you'll get a variety of professional/unprofessional opinions on what you can do - my advice is that you're not going to go thru all these preps, surgery, and recovery to abandon what you love. Don't sell that mtn bike or your planks.

My aortic valve surgery was last February 19th. I plan to be skiing the week of Feb. 13th in Telluride, CO. I plan to take it easy and take the nice long groomed Blue trails, like See Forever, Sundance, and all the trails off of chair lift 12 (for those who know the area). No Blacks for me this year. Taking it easy with John Denver Rocky Mountain High on my mind. I also plan to challenge my valve with some high elevation snow shoe hikes, and cross country skiing.

 

[pellicle]

Taking it easy with John Denver Rocky Mountain High on my mind.

beware ultralight aircraft too

 

[BillDaThrill]

I plan to be skiing the week of Feb. 13th in Telluride, CO. I plan to take it easy and take the nice long groomed Blue trails, like See Forever, Sundance, and all the trails off of chair lift 12 (for those who know the area). No Blacks for me this year.

And when Telluride rates a trail as black/advanced, they ain't kidding around. Am a big fan of the Gold Hill area and seeing how far my quads can take me down The Plunge. Telluride is amazing, hope you get some fresh snow and have a blast!

 

[Unicusp]

And when Telluride rates a trail as black/advanced, they ain't kidding around. Am a big fan of the Gold Hill area and seeing how far my quads can take me down The Plunge. Telluride is amazing, hope you get some fresh snow and have a blast!

Oh yeah. The Gold Hill area lifts 14 & 15 are real nice. I've done the Plunge. Fast and a quad burner. Not this year though! Agreed on the rating system. Some of the Blue trails would be Black at other ski area's.

 

[skier]

I was reading up on valve choices and came across this:

The younger the patient is and the better the left ventricular ejection fraction is, the earlier an aortic bioprosthesis degenerates and mandates reoperation.

Why is that? Is it as simple as a bioprosthesis wears out sooner when driven harder?

It's interesting and instructive to read the conflicting opinions on valve choice.

For biologic valves at a younger age:
https://www.acc.org/latest-in-cardi...c-valves-are-better-even-in-the-young-patient
Against biologic valves at a younger age:
https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.116.026385

 

[pellicle]

Why is that? Is it as simple as a bioprosthesis wears out sooner when driven harder?

yes ... and when younger

you need to understand this when making your choice.

Its worth mentioning that so called "tissue" is just basically leather, its not living and has no capacity to self repair (unlike living tissue).

https://www.ahajournals.org/doi/10.1161/JAHA.120.018506
there is much to read in that, but nothing wrong with starting here with Structural Valve Degradation.

Durability of Xenografts and Homografts​

The onset of SVD generally occurs 7 to 8 years after BHV implantation, with freedom from SVD rates substantially decreasing 10 to 15 years after surgery...​

a Xenograft is something that came from another animal.

Pathophysiological Features of SVD​

Native heart valves are a complex multicomponent system enabling self‐regulation because of valve interstitial cells (VICs) that produce and remodel the extracellular matrix (ECM).25 They provide a compensatory adaptive response to changing hydrodynamic and biochemical parameters of the body.25 In the absence of VICs, the lifespan of BHV directly depends on the durability of the chemically cross‐linked ECM. This chapter critically reviews the mechanisms that underlie SVD development.​

also a worthy read:
https://www.ingentaconnect.com/content/wk/hco/2017/00000032/00000002/art00005

Recent findings

Early degeneration caused by calcification and destruction of connective tissue of the prosthesis is controlled by multiple mechanisms, from mechanical stress to infiltration of lipids and inflammatory cells, and activation of the immune system. Despite major improvements in valve design and surgical procedures, the pathology is still the main limiting factor to the long-term durability. Appropriate selection of the model and size of bioprosthesis as well as proper medical management and follow-up after valve replacement are essential for optimal prevention, detection, and management of structural valve deterioration. Currently, redo open-heart surgery is the most frequently used approach to treat structural valve deterioration. The transcatheter valve-in-valve procedure, however, is a valuable alternative to surgery for high-risk patients.

I believe its fair to generalise that the younger you are the less duration you'll get from the valve. My personal reading between the lines of much of what I've read on this in the last ten years is also that the more active you are (and in my understanding generating more of the biochemistry which will be harmful to the valve) the shorter it will be. A correlation is that the more sedentary you are (as in say, old age) the less the valve is attaacked by your body and destroyed.

So the old chestnut of choice has actually scientific basis and once upon a time formed that actual surgical guidelines where if you are less than 60 you should seriously consider a mechanical valve.

I keep saying this like a broken record but: tissue valves are not managed by anything except redo surgery, mechanical valves are managed by the patient control of INR.

Best Wishes

 

[pellicle]

also @skier I think you should listen to this presentation starting here:



although I do recommend the whole thing

Remember "informed decision" means understanding the information (not just ignoring what you don't understand). Informed decision is the key to patient choice.

Best wishes

 

[tom in MO]

also @skier ...Remember "informed decision" means understanding the information (not just ignoring what you don't understand). Informed decision is the key to patient choice....

I agree completely.

Trouble is it's hard for doctors to understand doctors thus "the man on the street" can have a false sense of confidence making decisions based upon papers and presentations for whom the intended audience is a cardiologist or cardio thoracic surgeon.

"Understanding" means you need to know the context of the information to weight its importance. Without knowing anything about the authors, researchers, institutions and social context of the authors or presenters, it's hard if not impossible to for "the man on the street" to get the context needed for understanding. Much reported research is not repeatable or flawed by bias.

 

[Chuck C]

From time to time we see these posts along the lines: “Only doctors can understand the published medical literature, not us lay people. So, don’t read the literature just listen to your doctors, who are the intended audience of the literature”

I have some significant disagreements with this sentiment.

Let me back up to my pre-med days at UCLA. Although it was not required as part of my pre-med coursework, I opted to take a course in medical statistical analysis, because it was a subject that was of interest to me. It turned out that virtually all of the other students in the course were physicians and nurses. Apparently, the course counted as continuing education for them and, thus, there was an incentive for them to take it. In fact, it was taught at the hospital. I was expecting the course to be challenging, given the student body makeup. Quite the contrary.

I was very surprised at the lack of mathematical competency manifested by the doctors and nurses. It ended up being what I would consider a high school level course, and even then most seemed slow to grasp what was being presented by the professor, as evidenced by their questions in class and test scores. It is not that they were unintelligent, but when it came to math literacy, they seemed about the same as the general population.

Vitdoc recently said:

“As a medical professional having done surgery for many years I sort of find it interesting that lay people think that what surgeons suggest is always optimal. First we are governed by our own experience, where we trained and hopefully continued review of the medical literature.”

That would suggest that we ought to be cautious about putting our surgeons on too high of a pedestal.

I would agree with this sentiment from my own experience, not just from this medical statistics course but from other life experiences and interactions with physicians.

So, suffice it to say, that if someone is telling you to ignore the medical literature and just listen to your doctors, because only they can understand it, I am going to strongly disagree. I would encourage all to read the literature and to be as informed as possible. If nothing else it will give you some foundation from which to ask good questions from your medical providers.

 

[pellicle]

Hi Chuck

From time to time we see these posts along the lines: “Only doctors can understand the published medical literature, not us lay people. So, don’t read the literature just listen to your doctors, who are the intended audience of the literature”

it likewise irritates me and is a member of the same family (perhaps a sister and/or a mother) of agument that goes: "none of us are doctors here, we're just 'dudes' on the interwebs". This response is usually given because the argument presented is one (or some combination) of

• I don't understand what was written
• I don't like what was written because
  • it makes me feel conflicted
  • its now that I was told and didn't bother to check
• it contradicts what I tried to argue

...I opted to take a course in medical statistical analysis, because it was a subject that was of interest to me. It turned out that virtually all of the other students in the course were physicians and nurses. Apparently, the course counted as continuing education for them and, thus, there was an incentive for them to take it. In fact, it was taught at the hospital. I was expecting the course to be challenging, given the student body makeup. Quite the contrary.

the department of Biochemistry at my university regularly has medical people in on our practical experiments (especially if the number of people needed to fill the lab is not made by the Biochem students). I have found as a rough generalisation that the vast majority of "those without a clue" were from the medical area. I suspect this is because a person (complaining about their Alpha Romeo) training to be a Doctor so that they can do a speciality (that pays better) is actually not interested in the underlying principles as much as they are only what is going to be asked in the exams. I would say that I'm not the first to notice this:

I was very surprised at the lack of mathematical competency manifested by the doctors and nurses. It ended up being what I would consider a high school level course, and even then most seemed slow to grasp what was being presented by the professor

in my role as a technical person I've been required to teach maths to medical people such as nurses. I found that the only way to be effective was to make it a game and don't let them realise I was teaching them how to convert a decimal integer into base 2. I think I was the only one in our small (but national) organisation who was successful in this.

...So, suffice it to say, that if someone is telling you to ignore the medical literature and just listen to your doctors, because only they can understand it

then they are calling you a kind of stupid and denying you capacity.

How else are you to be "an informed patient" if you only listen to the person who tells you ... oh wait, I know, its like second opinions. Not needed.

I would instead advise: when reading the medical literature be very careful with terms, if you don't know what something means look it up and perhaps ask others something like "Hey, I read this, I think it means ****** can anyone here comment"

Amusingly those same people seem to offer the advice of:

but none of us here are doctors, have advanced degrees, know statistics or are able to comment (well, except for those of us who are and or have and can)

Best Wishes

 

[slipkid]

...So, suffice it to say, that if someone is telling you to ignore the medical literature and just listen to your doctors, because only they can understand it, I am going to strongly disagree. I would encourage all to read the literature and to be as informed as possible. If nothing else it will give you some foundation from which to ask good questions from your medical providers.

I've probably said this up here b4, and I say it all the time to people dealing with some type of medical illness/situation, which is "if you blindly listen to your Dr then you are a fool". Sometimes you don't have that option, in an emergency situation or whatever but if you do...

...then it pays to be somewhat educated and ask intelligent questions. I have caught numerous mistakes by Drs in the past only by my asking questions. The #1 thing I have learned from those exercises is that the competence of the Dr is inversely proportional to how mad and disrespectful they behave towards you because you simply dared to ask questions and wanted to understand what the options were or brought something to their attention which they either were wrong about or flat out just did not know themselves but acted like they did. I could write a book about my mindblowing experiences over the years.

 

[Chuck C]

I've probably said this up here b4, and I say it all the time to people dealing with some type of medical illness/situation, which is "if you blindly listen to your Dr then you are a fool". Sometimes you don't have that option, in an emergency situation or whatever but if you do...

...then it pays to be somewhat educated and ask intelligent questions. I have caught numerous mistakes by Drs in the past only by my asking questions. The #1 thing I have learned from those exercises is that the competence of the Dr is inversely proportional to how mad and disrespectful they behave towards you because you simply dared to ask questions and wanted to understand what the options were or brought something to their attention which they either were wrong about or flat out just did not know themselves but acted like they did. I could write a book about my mindblowing experiences over the years.

It is always a good idea to be as knowledgeable as possible. We are our own best medical advocate and educating ourselves is essential in this. I have also experienced what you describe a few times, in which a physician felt threatened by questions. A good physician will never feel threatened by questions from their patients. I am fortunate that my current medical team welcome all questions and are happy to discuss the medical literature, and, importantly, stay up on the literature- not all medical professionals do.

 

[skier]

I talked with my surgeon. These are my notes I'm digesting:

• Need to fix it.
• Not sure, but it looks like a leaflet may have torn. Hard to tell from the imaging. Won’t know until in there.
• Recommends replacement with mechanical. Concerns about coumadin are overdone.
• He confirmed that biologic valves don’t last as long in younger folks with high ejection fractions and those more active like me.
• Skiing and mountain biking is OK on coumadin. Wear a helmet, don’t be stupid. He worries most about mechanics, woodworkers, rock climbers, and people who fall and hit their heads on coumadin.
• I asked if it’s possible to do a redo repair. Yes, but he'd only repair it if it’s easy. He might be able to add a ring to stabilize the root. The ring would probably allow future TAVR for AI not just AS.
• Fixing a torn leaflet is probably not possible. His first inclination is replacement with mechanical but he's open to repair if it’s easy, reasonably durable, and would allow future TAVR.
• He spends lots of time talking folks out of TAVR to do the right thing and have open surgery. 35-year-olds want to be in and out of the hospital in a few days and back to work in a week in spite of it being a poor long-term choice. He was relieved I'm ok with another open surgery since it's the right thing to do.
• If I had AS instead of AI he’d recommend TAVR now. I could do a second TAVR in ~10 years, but the valve gets smaller and smaller with each TAVR.
• Timing: it’s not urgent unless I’m symptomatic. Get it done at my convenience (months, not years) as long as my exercise tolerance remains the same and no symptoms. Since skiing is my jam, he’d finish out the ski season and get it done in the spring.
• In the meantime, he’s OK with moderate skiing and exercise. Ok to get my HR a bit higher than I have, just stay out of zones four and five.

 

[pellicle]

I talked with my surgeon. These are my notes I'm digesting:

if I may add thoughts to aid your digestion?

• Recommends replacement with mechanical. Concerns about coumadin are overdone.

agreed ...

• He confirmed that biologic valves don’t last as long in younger folks with high ejection fractions and those more active like me.

I'm still mystified that the same evidence that he uses to guide his knowledge is somehow not recognised here ... but I'm glad he confirms what's still well known

• Skiing and mountain biking is OK on coumadin. Wear a helmet, don’t be stupid.

agreed ... same for me on my motorcycle or on my scooter. Its actually good life advice for anyone (on warfarin or not)

• I asked if it’s possible to do a redo repair. Yes, but he'd only repair it if it’s easy.

to me this would be stupid because while in there why not fix the thing properly? I mean additional surgeries (or TAVR interventions) are not without greater risks and those risks accumulate and go well beyond just the surgical risks. Surgery is not to be taken lightly and this surgery less so than most. Worst, you aren't as strong and fit at >60 as you are now making recovery more vexed ... and for what? To avoid a drug that in the longer term you will have at least a 30% chance of requiring?

• Fixing a torn leaflet is probably not possible. His first inclination is replacement with mechanical but he's open to repair if it’s easy, reasonably durable, and would allow future TAVR.

I'd agree but would not even consider a repair. Why risk more future surgeries to fix the thing that was fixed but didn't stay fixed long?

• He spends lots of time talking folks out of TAVR to do the right thing and have open surgery. 35-year-olds want to be in and out of the hospital in a few days and back to work in a week in spite of it being a poor long-term choice. He was relieved I'm ok with another open surgery since it's the right thing to do.

he sounds sensible ...

• If I had AS instead of AI he’d recommend TAVR now. I could do a second TAVR in ~10 years, but the valve gets smaller and smaller with each TAVR.

but you do realise that's 1) IFF its possible and 2) the valve area gets smaller and thus restricts your fitness exactly like stenosis does with every such operation and 3) each one will last less time before the next is made because an indicator for valve SVD is smaller oriface.

Hope that helps your digestion

 

[skier]

I'd agree but would not even consider a repair. Why risk more future surgeries to fix the thing that was fixed but didn't stay fixed long?

You answered why a repair is preferred here:

Its worth mentioning that so called "tissue" is just basically leather, its not living and has no capacity to self repair (unlike living tissue).

My understanding is there is excess mortality with both mechanical and biologic valves over baseline, and a repair can have less long-term mortality because it's living tissue. This is why an aortic valve repair is preferred over both mechanical and tissue valves when possible.

The hope was my original repair would last a lifetime. My BAV was working fine with trace regurgitation before my first surgery. They repaired it and fixed my aneurysm while removing a myxoma tumor, all done per guidelines. This is obviously not the desired outcome.

As far as a redo repair to fix it now, I brought it up, hoping it could be possible and help with overall long-term survival. It doesn't seem likely per my surgeon, and I only want a redo if he thinks it will last 15+ years.

I'm not sure of the numbers, but I think it would be worth another surgery at 70 if my risk of death between now and then is reduced more than the surgical risk at that age? Aren't present value years more valuable than future value years, especially when you have kids?

 

[pellicle]

You answered why a repair is preferred here:

if I did I'm sorry I must have missed it ...

This is why an aortic valve repair is preferred over both mechanical and tissue valves when possible.

I'm confused, I thought you presently had a torn leaflet in a bioprosthesis, not a native valve. I thought you were asking about repairing a bioprosthesis.

However if you have a torn leaflet in a native valve I would not suggest that the data for that is good for people under 60 either

but I think it would be worth another surgery at 70

when you get to experience what 70 feels like I'm pretty sure you won't agree.

Aren't present value years more valuable than future value?

I don't understand this either ... I am having an absolutely fine time with my mechanical valve and it operates to me as well as a tissue valve does for the first 10 years and then I don't get SVD and what to do next.

So my "present value" is high and will remain so for the expected duration of the valve or until something else happens.

Please keep in mind I have no stake in what you decide. I'm just offering the experience and knowledge I've acquired over being "skin in the game" for 40 years now. Its possible I've learned something in that time. None the less what you do is of no actual consequence to me.

Best Wishes