Extreme Anxiety, Minimally Invasive, Ross Procedure, and Life Expectancy

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pellicle

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Hi

an excellent perspective piece and I hope it helps the OP

My cardiologist reported high confidence that intervention won’t be required for 10-15 years based on what we know now
that's excellent news ... always better to have substantial time up your sleeve for the possibility of furthering understanding and practice.
 

Bmorgan4

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Hi

an excellent perspective piece and I hope it helps the OP


that's excellent news ... always better to have substantial time up your sleeve for the possibility of furthering understanding and practice.
Yes - I agree. Part of me wishes we wouldn’t have come across this incidental finding but it is certainly safer to know and be monitored. And I feel I have matured in the past 3 months more than I did in the first 35 years. Perspective.
 

pellicle

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Part of me wishes we wouldn’t have come across this incidental finding
back in 2009 my wife and I were planning an epic skiing trip (based on some years of preparitory training in Finland {where we lived}) for the next winter, it was to go from Abisco to Kebnekaise towing sleds. We'd prepared the route but we had to come home (to my home, Australia) because of a few reasons.

I'd noted that my ski track times were plateaued despite better technique and I suspected from the feel of my heart beat that my valve was becoming a limiting factor (the surgery that put it there was in 1992).

Turned out that yes the valve was getting "tired" but the real interest point was the 5.6cm aortic aneurysm they found ... had I done that trip I'd probably have died out there. That would have been very hard for my wife.

To me knowledge is power and understanding and knowledge lead to a peaceful mind as long as you accept truths.

I believe it is the development of our character, to develop resilience in life that is really our true goal. Being happy in good times is easy, Life is not always happy, so being able to cope with the difficulty is what enables us to not become chronically unhappy (and seek always the negative views).

From Marcus Aurelius

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for us all we have to do is be patient and continue living virtuously.
 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
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1. To me I wanted one and done at age 55. I'd had other surgeries and did not enjoy them or the disruption it does to your life. Plus, my job is not the most secure, so I didn't want to bet on good insurance and a generous disability program for future surgeries. I wasn't offered the Ross procedure, but I believe that's 2 valves impacted and a future replacement. I wouldn't be comfortable with that.

2. TAVR was not available to me, but tissue was. I went mechanical for the one and done concept. Warfarin's biggest impact on me is not being able to take NSAIDs for arthritis and other orthopedic issues.

3. With my St. Jude mechanical both my surgeon and cardiologist told me I would pass on due to something other than my mechanical valve.

A modern philosopher said that if a choice is difficult, that means both paths have equal merit. Take heart in that since you then cannot make a wrong choice...

For anxiety I like exercise, good movies and rote prayer. The rosary works for me. The occasional cigarette helps, but I cannot do that anymore :)
Smoking is the best bad habit..Prayer is wise and has evidence to back it up.. I have arthritis as well; what do you take for pain ? NSAIDS work best for me...Tylenol not as much..Pain cream, exercise, swimming, physical therapy, magnesium, glucosamine help
 

tom in MO

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Smoking is the best bad habit..Prayer is wise and has evidence to back it up.. I have arthritis as well; what do you take for pain ? NSAIDS work best for me...Tylenol not as much..Pain cream, exercise, swimming, physical therapy, magnesium, glucosamine help

NSAIDS are not recommended for people on warfarin. Some doctors disallow them, my cardio allows for up to 3 months at the maximum OTC dose. The problem is NSAIDS can cause stomach bleeding which is hard to treat if you are on anticoagulation agents.
 

cldlhd

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Hi - I am in a similar place as you. 36 year old (competitive cyclist) with incidental finding of BAV. Mild regurg, no stenosis, no aneurism or dilatation. My cardiologist reported high confidence that intervention won’t be required for 10-15 years based on what we know now. As we continue to collect annual echo’s, that may even push out. The averages would say mid 50’s is most common for intervention. But some are lucky to push out further and anywhere between 20-50 percent of people never need intervention. I know it is hard, I also struggle. I always lean back on more recent data that life expectancy for us BAV folks is equal to that of the general population. We are blessed to have the opportunity to live a life of gratitude, understanding that every day is a gift. The life expectancy tables you are quoting are for the non BAV cohorts which are generally replacements due to unhealthy behavior, etc. they are also later in life. It’s all cause mortality they are quoting, so yea a 70 year old getting a new valve wont have great longer term stats:). What worries you the most? Is it the possibility of surgery or are you concerned about reduction of life? Have you talked to a counselor? Sometimes these forums can also raise anxiety. If you find yourself reading too much on here, maybe try setting aside for a while and going on with life? Chances are - you and I are going to have completely different decision criteria when it’s our turn. Technology will have changed. Hopefully, tissue valves will have proven more durable with the TAVR valve in valve technology for round 2. Nobody looks forward to surgery, but try not to let the 15 years before surgery be worse than the surgery itself!! Another way to think about this - imagine you are talking to someone else who is going through what you are. What would you tell them? Isn’t it interesting how your perspective can be much clearer when you take emotion out of it? I Hope this helps you in some way. I feel what you feel, and I know we will both get through this.
I agree, sometimes forums can raise anxiety because you're constantly reading about people with all different kinds of heart issues which if you're the type might get your mind racing about negative possibilities. However it is also a good place to get a lot of relevant information that helps make a decision. I think the positive part to take out of it is there's so many people out here who had surgery that was successful.
 

Gina

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My 30 year old son is thinking of having the tissue valve instead of the Ross procedure he has severe aortic stenosis has anyone had a tissue valve could you tell me your experiences if so, good or bad . It's a scary time for him so I'm hoping someone can reassure him it's a good option
 

vitdoc

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My 30 year old son is thinking of having the tissue valve instead of the Ross procedure he has severe aortic stenosis has anyone had a tissue valve could you tell me your experiences if so, good or bad . It's a scary time for him so I'm hoping someone can reassure him it's a good option

This topic gets hammered on this forum a lot. Tissue valves are nice in as much there is no need for long term anticoagulation. But tissue valves have a lifetime that is less than human life expectancy. Say 10-20 years on average. So down the line another procedure would be needed. We now have TAVR which is a technique to place a valve in the aortic position through the femoral vein. It is used primarily now for older people who might be a bit high risk for standard surgery. It is becoming more mainstream. And it can be used after a tissue valve goes bad. But it too is a tissue valve and with a lifetime possibly less than the surgically placed tissue valves. So given the current state of knowledge your son might get say 30 years out of the original valve and the TAVR valve. Then another procedure would needed to be done.
What will be available in 30 years is anyone's guess. But your son would have to have probably at least three procedures.
If a mechanical valve were placed it might last a lifetime. However surgery might be needed if a aortic aneurysm develops. So the current state of the aorta also may play a bit into the decision making .
Many people are afraid of being on warfarin for a lifetime. It is not something I would wish for but it is not so bad either. I started on warfarin when I was 35 and I am now a few days short of 73. Did everything I wanted from a sports perspective and so far have not had any major issues. But it would be nice not to be on it.
So you trade having multiple procedures to correct the valve problem each with it's own risks vs long standing anticoagulation. I suppose if one had a mechanical valve and down the road a new valve came out that had longevity and did not required anticoagulation that surgery could be down to take out the mechanical for this new hypothetical valve but it might be hard to convince the medical system to operate on someone doing well who just wants to avoid anticoagulation.
So not a simple decision.
 
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pellicle

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My 30 year old son is thinking of having the tissue valve instead of the Ross procedure he has severe aortic stenosis has anyone had a tissue valve could you tell me your experiences if so, good or bad . It's a scary time for him so I'm hoping someone can reassure him it's a good option
myself I would take a mechanical over a tissue valve and a tissue valve over the ross all day long every day of the year.
Here is my opinions


I wrote that in 2014 and I would still fall on that side of the fence.

People often report "how it was for me" ... I prefer to think statistically. "Hey, I won the lottery" does not translate to the rest of the population. Equally 70 year old people telling you success of "their choice" bears no relationship to a 30 year old man.

Also its important to know what is the basis of stenosis, is it bicuspid valve?

Reach out if you want some thoughts, but I've been that son

1629073225773.png


That surgery was to replace my valve (stenotic) with a living tissue valve from another human. I can not in good faith say I support Ross (which destroys a pair of valves over time, one of which was perfectly fine where it was).

within a few years I was living and acting normally
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Travelled to and lived in Korea (this is the border with Nth Korea)

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Lived in Finland and did sled pulling skiing trips
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backpacked extensively

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and married the most beautiful woman in the world
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So there should be no anxiety and only relief that we live in a wonderful world with this sort of surgery available. My first surgery was when I was 10, second at 28 and third at 48.

My mother (and father) have passed away (some years back) but I continue to live and act normally as behoves the struggles to give me a life that my mother started so long ago.



Best Wishes

P.S. Why all the pictures?

Because pics or it isn't real
 
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dick0236

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Hi Gina. I was 30 years old when I was diagnosed with severe aortic stenosis and had the surgery several months later when I was 31. Tomorrow, Aug. 16, 2021 my "one and only mechanical valve" turns 54 years old. I am glad I didn't have all the choices patients have today in valves and procedures......but I hope I would have made the same decision I made in 1967 and have a mechanical valve implanted.
 
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Kathmack

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My 30 year old son is thinking of having the tissue valve instead of the Ross procedure he has severe aortic stenosis has anyone had a tissue valve could you tell me your experiences if so, good or bad . It's a scary time for him so I'm hoping someone can reassure him it's a good option
Hi Gina and welcome! I recently had an aortic valve replacement (4 months ago). The diagnosis of valve regurgitation was really big surprise and the surgeon said that I should get the TAVR due to my age of 79. I did lots of reading about all things aortic valve related and after weighing all the info I definitely felt that TAVR was right for me. I factored in all my comorbidities, my age, my overall health, etc. I agree that it is a scary time especially for one who’s as young as your son is. I feel that choosing a tissue valve was exactly the correct choice for me and I was able to leave hospital in one day. My doctor is having me take the anticoagulant Pradaxa to keep clots at bay and of course regular echoes. It’s amazing that one wakes up from the TAVR feeling 100 percent normal in every way.
 

pellicle

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...I will try get him to read them ..
one last thing.
There seems to be an unresolved conflict in the minds of many people; they at once seek a single solution to the problem in order to go back to (the dream of) it never happened and I want to go back to how it was before I knew. To essentially forget it.

This is unattainable and dangerous.

Now it is important to recognise that there is no "Jesus touched me" definitive cure for valvular heart disease. None. We are able however to exchange a disease which will lead to death with what is manageable: that is prosthetic heart valve disease.

The choices are pretty well known. One basically has to choose between a valve which is almost totally certain to not fail vs a valve which is almost entirely certain to fail within 20 years. At 30 20 puts you younger than me now.

The caveat is that if you pick the valve that has the greatest chance to last your life time it brings with it a requirement that you dilligently pay attention to management of a medication (Anticoagulation Therapy). Its not onerous (takes me about 10 minutes per week) but its important and present.

The main issue is however that its rare that once you have been diagnosed with this condition that you get away with one surgery. Why? Because there are conditions which emerge later that are related to it that can drive a reoperation. Such a condition is the development of aneurysm of the aortic artery. It was just that which drove my 3rd operation. However I would hasten to point out that my existing homograft was calcifying (and it was around 20 years old at that time) and would have eventually driven the reoperation given a few more years.

Now of course I have a mechanical which I anticipate will last me the remainder of my life. I am 57 at this moment.

I would contemplate those points in a rational logical way.

Best Wishes
 

mina

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Hi Gina. I was 30 years old when I was diagnosed with severe aortic stenosis and had the surgery several months later when I was 31. Tomorrow, Aug. 16, 2021 my "one and only mechanical valve" turns 54 years old. I am glad I didn't have all the choices patients have today in valves and procedures......but I hope I would have made the same decision I made in 1967 and have a mechanical valve implanted.

Always grateful for Dick's presence and thoughts, and the hope he gives us younger travelers! (I honestly found nothing more comforting, after I'd had emergency OHS to replace a badly damaged BAV I didn't even know I had, than stumbling on this site a couple months post-surgery and seeing posts from someone who had one of the very first mechanical valves and has lived with it as long as Dick has - no doctor reassurances can come close to seeing what's possible in real life.) Happy 54th valversary, Dick!
 

Superman

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Not much I can add here. Much younger than most when I had my valve replaced originally at 17. I presented with both stenosis and regurgitation from a very young age. Had my first heart cath when I was 4. I think pellicle’s ranking is about where mine is. I’d take mechanical first, then tissue, then Ross in terms of favorability.

But this is opinion and what helps one sleep at night. For me, managing meds was preferable to being put through another OHS. However, 19 years later I still had to be cut open again due to an aneurysm, so no guarantees anyway. I’m going on 12 years since that surgery and going on 31 years since starting warfarin, and I’m still only 48.

Married, I’m blessed with five awesome kids. We’re currently vacationing in Utah and Colorado doing some hiking and sightseeing. Regardless of choice, life does go on. Here’s a couple photos I took on this trip.

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Double O arch in Arches National
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Dinosaur Ridge in Colorado just west of Denver.
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Lower Calf Creek Falls near Boulder, Utah off Utah 12. Great swimming hole beneath the 126’ waterfall.
 
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Kathmack

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Just got a chance to see your photos and they are so terrific! I have a step-son who lives near Denver but I‘be never been able to go out to see him or the beautiful state of Colorado but I sure hope to see it soon! Thanks very much for sharing your photos!
 

dornole

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Gina, I'm a bit late to the party but if you are still checking this - has anyone talked to your son about a valvuloplasty? That is the procedure I had 19 years ago for mitral stenosis. Similar to an angioplasty for a blocked blood vessel, they use a balloon to open up the stenosis on the valve. It looks like maybe it's not as great an option for aortic valves, but still maybe something to know about and consider. It allowed me to avoid surgery and keep my native valve.

Valvuloplasty - Type - Mayo Clinic

If replacement is needed I would definitely go with mechanical if 30 years old . . . tissue valves wear out even faster in young people, and also if the stenosis is due to calcification I believe that would be another bad sign that the tissue valve could crud up quickly. I wouldn't risk multiple OHS (or no options at all due to scarring) unless I had no choice.
 

carolinemc

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30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.

1. The Ross Procedure sounds really good if I need to get surgery while I’m in my younger years. Why don’t more people in America use it? It’s much more common in Europe. My Cleveland clinic cardio said I could easily still make it another 25 years before needing surgery, does that sound right to you all?

2. My understanding is that TAVR isn’t used on regurgitation, only stenosis. but would I still potentially be a candidate for other minimally invasive techniques? Cleveland clinic does a ton minimally invasive now, so just making sure I could be a candidate for that(really intrigued by quicker recovery time) and that TAVR isn’t the only type of minimally invasive. J-incision is different than TAVR, no?

3. Are there any encouraging studies or stories from your cardio about life expectancy? I see studies that say no effect to life expectancy after BaV, then others that say it’s significant if you have the surgery as a young person. But those studies seem really flawed(I’m thinking of the new huge Swedish study everyone’s reading).

could really use some positivity on this one, so please consider bedside manor and thank you for your time :).
Everyone that can make a choice, does their own research and talks with the Cardio Surgeon, who has a final say on the matter of the valve that will be placed in. And it depends also on the health of the patient. If you need more information, from a better source. talk to your cardio and cardio surgeon, for the best information on the valve to use. And go to many reliable resources for information. Good luck and keep researching. Knowledge is great tool.
 
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