mechanical or tissue valve and an active lifestyle?

[carolinemc]

I'm ten weeks out of surgery. Mechinical valve. My diet is the same. I watch my consumption of alcohol, but that's a good idea anyway. I walk everyday and last week I walked 15000 steps one day and 18500 steps three days later. I am starting to rebuild my core with squats. Soon I will start jogging and light lifting. The goal is a 5K next year.

Congrats to you. Doing great and keep it up.

 

[PhillyJohn]

Arnold had the Ross Procedure in 1997. As expected with all Ross Procedures, when performed on young patients, Arnold then had to get OHS #2 and OHS #3. In 2018 his donor pulmonary valve was replaced and then in 2020 his aortic valven was really his own pulmonary valve, which the Ross Procedure moves to the aortic position, was replaced in OHS #3.

Take a look at the linked video below, which Arnold posted 2 weeks ago, where he talks about his 3rd OHS. He talks about how he was told they can just go through his groin. Well, for both #2 and #3, they were not able to go through the groin with a TAVI or TPVI, but had to do full blown OHS both times. The promise of "we'll just go through your groin for #2 and #3", does not always hold up in the real world. See his quote and the linked article below after his pulmonary OHS#2, in which he hoped for TPVI, but it did not work. See the video, where the same hope was dashed for his aortic valve and had to get OHS #3.

In my view, all patients considering a Ross should be required to know Arnolds story and watch the video below. Keep in mind, his Ross Procedure story is actually a success story, in terms of the possible outcomes of the Ross. His donor pulmonary valve lasted 21 years and his aortic donor (his own pulmonary) lasted 23 years. That is a totally normal outcome for the Ross. Many are not this lucky. We have at least 2 newer members whose Ross valves needed replacement much much sooner than that.



"Because he felt that a mechanical valve (which would require long-term blood thinners) might limit his physical activity (not to mention his acting career) and capacity to exercise, Schwarzenegger elected to undergo a surgery called a Ross Procedure. "

https://www.medpagetoday.com/popmedicine/celebritydiagnosis/89475
Some interesting comments in this article following his 2018 pulmonary valve replacement OHS #2.

"So, people typically do not get their pulmonary valves replaced like he did?

" I went to sleep expecting to wake up with a small incision and woke up with a big one "

Correct. Usually, pulmonary artery or pulmonic valve problems are issues we see in children. His was an iatrogenic pulmonary valve problem, meaning we (physicians) created it."

Yes, his pulmonary valve problem was created because of the Ross, which messes with a perfectly functional pulmonary valve.

https://hcahealthcaretoday.com/2018/04/06/what-was-wrong-with-arnold-schwarzeneggers-heart/

There's a new-ish documentary about Arnold on Netflix right now, and there's a brief scene about his first OHS. Apparently there was some complication, and they had to immediately bring him back into surgery when he woke up from the initial anesthesia. He doesn't go into details about the complications, though.

 

[Superman]

Not everyone has access to a computer much less internet access to do the research, so no need to put people who come here asking questions. And also, many cardiologists are seeing so many patients in one day, they have no time to answer questions to the patients. It has nothing to do with common sense. No need to put these people down for coming here to ask the questions.

If they’re coming here to ask questions, by default doesn’t that indicate that they have access to a computer or smart device and the internet? I’m good with people asking questions here. That statement was just curious to me.

 

[sandpoet_1]

I agree. There is a lot of good information out there to indicate that people can live an active life with a mechanical valve. What makes it challenging is that there is also a lot of misinformation out there, or at the very least, misleading information, often promoted by those who stand to lose out financially when patients choose a mechanical valve.

For example, according to Edwards Lifesciences, who only makes tissue valves and not mechanical, you can't have an active lifestyle with a mechanical valve. See quote below and link to their website. And hey, while they're at it, throw in some misleading information about dietary restrictions:

"The INSPIRIS RESILIA valve delivers on the promise of better ongoing patient quality of life without the inconvenience of monitoring, dietary restrictions and reduction of participation in active lifestyles typically seen with a mechanical valve."

https://www.edwards.com/healthcare-professionals/products-services/surgical-heart/inspiris-resilia
I expect that the black helicopters will soon be circling around my house again.

What a bunch of hooey!
Eating limitations are a fallacy. I test at home bi monthly and eat like I always ate only on rare occasion changing Warfarin dosage.
Monitoring at home is a 10 minute test and Coagchek notification.
Exercise limitations? I lift and hike as I did pre AVR and my internist tells me I have no limitations, in fact I have better heart health than before. I acquired Afib from the surgeries( I had a redo and heart repair). The Afib has never caused a tachycardia event, because my resting pulse is in the high 30’s to low 49’s from years of intense running and strength training. My ejection fraction is above 60, so that’s another indication of a healthy and efficiently pumping heart.
I agree there’s a lot of bad information in the internet, but reading widely can provide you with the right questions to ask your doctors.
Be aware that all doctors are not created equal. For an active athlete, sports doctors are better qualified to address your questions regarding your specific exercise regime. And, dieticians are the same as sports nutritionists. For example, The Mayo Clinic will always warn against the use of supplements of any kind, because of the lack of FDA approval. We all know many supplements do work and most that purport to address a certain condition are worth trying.

 

[sandpoet_1]

What a bunch of hooey!
Eating limitations are a fallacy. I test at home bi monthly and eat like I always ate only on rare occasion changing Warfarin dosage.
Monitoring at home is a 10 minute test and Coagchek notification.
Exercise limitations? I lift and hike as I did pre AVR and my internist tells me I have no limitations, in fact I have better heart health than before. I acquired Afib from the surgeries( I had a redo and heart repair). The Afib has never caused a tachycardia event, because my resting pulse is in the high 30’s to low 49’s from years of intense running and strength training. My ejection fraction is above 60, so that’s another indication of a healthy and efficiently pumping heart.
I agree there’s a lot of bad information in the internet, but reading widely can provide you with the right questions to ask your doctors.
Be aware that all doctors are not created equal. For an active athlete, sports doctors are better qualified to address your questions regarding your specific exercise regime. And, dieticians are the same as sports nutritionists. For example, The Mayo Clinic will always warn against the use of supplements of any kind, because of the lack of FDA approval. We all know many supplements do work and most that purport to address a certain condition are worth trying.

Correction: dieticians are not sports nutritionists.

 

[Chuck C]

What a bunch of hooey!
Eating limitations are a fallacy. I test at home bi monthly and eat like I always ate only on rare occasion changing Warfarin dosage.
Monitoring at home is a 10 minute test and Coagchek notification.
Exercise limitations? I lift and hike as I did pre AVR and my internist tells me I have no limitations, in fact I have better heart health than before. I acquired Afib from the surgeries( I had a redo and heart repair). The Afib has never caused a tachycardia event, because my resting pulse is in the high 30’s to low 49’s from years of intense running and strength training. My ejection fraction is above 60, so that’s another indication of a healthy and efficiently pumping heart.
I agree there’s a lot of bad information in the internet, but reading widely can provide you with the right questions to ask your doctors.
Be aware that all doctors are not created equal. For an active athlete, sports doctors are better qualified to address your questions regarding your specific exercise regime. And, dieticians are the same as sports nutritionists. For example, The Mayo Clinic will always warn against the use of supplements of any kind, because of the lack of FDA approval. We all know many supplements do work and most that purport to address a certain condition are worth trying.

Thanks for you comment.

I hope that you understand that this was my point. Edwards claiming that we can't have active lifestyles and can't eat what we want is a bunch of hooey. I have a mechanical valve, eat what I want and am active, so I think that you are saying that you agree with my comment. I'll interpret your comment to mean that you believe that Edwards telling us this misinformation is hooey and not that my post was hooey. If you are disagreement with me, please let me know in what way, but from all that you indicate in your comment, it would appear that we are on the same page on this.

 

[Chuck C]

I agree there’s a lot of bad information in the internet, but reading widely can provide you with the right questions to ask your doctors.
Be aware that all doctors are not created equal. For an active athlete, sports doctors are better qualified to address your questions regarding your specific exercise regime.

Yes, I agree and I have made the point many times that if a person seeks out information, and knows how to analyze things critically, that it can help prepare them to ask good questions of their medical team. I encourage people to read and read and read, about their situation. I was making the point that the misinformation put out there, by individuals and companies, such as Edwards, who should know better, makes the search for accurate information challenging. And, certainly, as you say, all doctors are not created equal. If it was possible, I would double thumbs up on that comment.

 

[pellicle]

Hi and welcome

What a bunch of hooey!

I'm not really sure if you were making that statement about what Chuck said (as you did quote him) but it looks like it.

However you went on next to make the point that you thought what Chuck said was about right.

Eating limitations are a fallacy. I test at home bi monthly and eat like I always ate only on rare occasion changing Warfarin dosage.

I believe that robust discussion is hard at the best of times, but to me your opening here started as a confrontational and apparently setting up to contradict the person. This probably isn't the best way to make it clear to the casual reader what you mean.

I'm glad you test at home (I do too) and I'm glad that you don't need to make many dose adjustments (in reality I'm similar there too).

I (and Chuck among others here) work pretty tirelessly to dispell the myths about warfarin and the mechanical valve choice.

Both valves are different because peoples needs are often different. Do I think some people would be better served by one or the other? Perhaps, but only they can decide for themselves.

Anyway, Welcome aboard.

 

[carolinemc]

If they’re coming here to ask questions, by default doesn’t that indicate that they have access to a computer or smart device and the internet? I’m good with people asking questions here. That statement was just curious to me.

It is just that in here we take the space from the busy cardio's, fill in the questions and smile for the club member who know has a place to go to find answers.

 

[sandpoet_1]

Yes, I agree and I have made the point many times that if a person seeks out information, and knows how to analyze things critically, that it can help prepare them to ask good questions of their medical team. I encourage people to read and read and read, about their situation. I was making the point that the misinformation put out there, by individuals and companies, such as Edwards, who should know better, makes the search for accurate information challenging. And, certainly, as you say, all doctors are not created equal. If it was possible, I would double thumbs up on that comment.

I’ll say cardiac surgeons and advice on physical exercise after surgery is abysmal. Same goes for dieticians, who are not nutritionists and don’t understand diets that aren’t defined in the AHA guidelines. Be aware that everyone, whether you are Mark Spitz or John Goodman are fed, treated and advised in the same Manner, despite a great difference in fitness and physical conditioning.
I had a dispute with a dietician who tried to advise me at discharge. I told her that the hospital would kill me with her dietary regime. Entering the hospital with a total cholesterol reading of 160 and leaving with a 220; entering with body weight of 190lbs and 10%bf, leaving at 150lbs and unk bf%, they didn’t feed me adequate protein and I was wasting away. I was in the hospital for 4 months and the first 30 days I lost 50lbs. I gained back 10 lbs in rehab.
At least during my redo at Stanford, I was in and out in 6 days and not subjected to their dietary regime.
Lesson: choose doctors wisely and speak to dieticians about you specific needs, making stern demands if thwarted. My situation was emergent due to advanced endocarditis which destroyed my aortic valve and simultaneously caused a brain aneurysm.
I know more about the heart than I care to, but imparting my experience may help someone else.
By the way, inr ranges for a tissue valve is 2-3, whereas a mechanical is 2.5-3.5. I prefer to see mine on the high side to minimize risk if clotting, but not so high to cause a brain bleed because of my artery clip in the brain.

 

[sandpoet_1]

Thanks for you comment.

I hope that you understand that this was my point. Edwards claiming that we can't have active lifestyles and can't eat what we want is a bunch of hooey. I have a mechanical valve, eat what I want and am active, so I think that you are saying that you agree with my comment. I'll interpret your comment to mean that you believe that Edwards telling us this misinformation is hooey and not that my post was hooey. If you are disagreement with me, please let me know in what way, but from all that you indicate in your comment, it would appear that we are on the same page on this.

I agree with you. My response was not a reply to you, but my personal opinion on the subject matter. I recognize I can appear to be a little blunt dinetimes and that may be due to my years as a CEO in private industry where decisiveness and applied experience made for better outcomes. I’m not ine to sugarcoat or pander.

 

[Protimenow]

I agree. There is a lot of good information out there to indicate that people can live an active life with a mechanical valve. What makes it challenging is that there is also a lot of misinformation out there, or at the very least, misleading information, often promoted by those who stand to lose out financially when patients choose a mechanical valve.

For example, according to Edwards Lifesciences, who only makes tissue valves and not mechanical, you can't have an active lifestyle with a mechanical valve. See quote below and link to their website. And hey, while they're at it, throw in some misleading information about dietary restrictions:

"The INSPIRIS RESILIA valve delivers on the promise of better ongoing patient quality of life without the inconvenience of monitoring, dietary restrictions and reduction of participation in active lifestyles typically seen with a mechanical valve."

https://www.edwards.com/healthcare-professionals/products-services/surgical-heart/inspiris-resilia
I expect that the black helicopters will soon be circling around my house again.

This string has morphed a lot.

IIRC, there was talk about grapefruit and INR.

Grapefruit is a nasty bugger, interacting with many medications besides warfarin.

I don't like grapefruit juice -- especially the canned stuff, and haven't lost any sleep avoiding the actual fruit.

 

[pellicle]

My response was not a reply to you, but my personal opinion on the subject matter.

on the internet, when you quote someone its a reply to them.

I'm often accused of being blunt myself, so no problem there. Indeed the problem was the ambiguity of "is this reply a reply or not a reply".

Personally after many decade of discussion on the internet I prefer to begin something like you wrote previously with:

I agree, and ....​

 

[pellicle]

Grapefruit is a nasty bugger, interacting with many medications besides warfarin

yes indeed ... and worse, it brings no health benefits with it for that "other factor".

 

[sandpoet_1]

on the internet, when you quote someone its a reply to them.

I'm often accused of being blunt myself, so no problem there. Indeed the problem was the ambiguity of "is this reply a reply or not a reply".

Personally after many decade of discussion on the internet I prefer to begin something like you wrote previously with:

I agree, and ....​

I guess telling my story should be a new post, yet it flows with the subjects discussed even without the “I agree, and…” lol

 

[Brian B]

My doctor actually made the choice for me based on my age..I am 54 so they went with the mechanical. The Coumadin is a small price to pay. It makes sense. to me. The only thing that is irritating is the sound at times, but I have gotten used to it. They fully explained why that decision was made to go mechanical. I am now just getting back to exercising regularly...my concern is not the valve. It is getting my body used to the ranges of motion again..

 

[tom in MO]

...By the way, inr ranges for a tissue valve is 2-3, whereas a mechanical is 2.5-3.5. I prefer to see mine on the high side to minimize risk if clotting, but not so high to cause a brain bleed because of my artery clip in the brain.

Well being a former CEO in private industry where decisiveness and applied experience made for better outcomes, I'd guess you like to be corrected when wrong. The correct INR for a valve depends upon valve material, valve model, placement and how that valve is operating within the individual. Specific to your ranges, I believe they are for mitral valves but not aortic. The old aortic range for my valve was 2-3, but now my mechanical St. Jude in the aortic position has a target range of 2-2.5 which is not even within your target range of 2.5-3.5.

 

[Gail in Ca]

When my second aortic mechanical valve was placed, my surgeon, Dr Miller told me my range with this Carbomedic top hat valve was good at 2-3, and he said he wouldn’t worry if my INR went down to 1.8. I had bacterial endocarditis with a subarachnoid haemorrhage before that surgery. I think he was trying to keep my INR low because of that. However, when I went into chronic a fib 5 years after surgery, my cardiologist upped my range to 2.5-3.5 where it remains. I tried to keep my INR at 2-2.5 after my surgery but that range is very difficult to keep imo.
The last 3 mos my actual test range has been 2.6-3.9, only out of range high twice. Pretty stable!

 

[tommyboy14]

Arnold had the Ross Procedure in 1997. As expected with all Ross Procedures, when performed on young patients, Arnold then had to get OHS #2 and OHS #3. In 2018 his donor pulmonary valve was replaced and then in 2020 his aortic valven was really his own pulmonary valve, which the Ross Procedure moves to the aortic position, was replaced in OHS #3.

Take a look at the linked video below, which Arnold posted 2 weeks ago, where he talks about his 3rd OHS. He talks about how he was told they can just go through his groin. Well, for both #2 and #3, they were not able to go through the groin with a TAVI or TPVI, but had to do full blown OHS both times. The promise of "we'll just go through your groin for #2 and #3", does not always hold up in the real world. See his quote and the linked article below after his pulmonary OHS#2, in which he hoped for TPVI, but it did not work. See the video, where the same hope was dashed for his aortic valve and had to get OHS #3.

In my view, all patients considering a Ross should be required to know Arnolds story and watch the video below. Keep in mind, his Ross Procedure story is actually a success story, in terms of the possible outcomes of the Ross. His donor pulmonary valve lasted 21 years and his aortic donor (his own pulmonary) lasted 23 years. That is a totally normal outcome for the Ross. Many are not this lucky. We have at least 2 newer members whose Ross valves needed replacement much much sooner than that.



"Because he felt that a mechanical valve (which would require long-term blood thinners) might limit his physical activity (not to mention his acting career) and capacity to exercise, Schwarzenegger elected to undergo a surgery called a Ross Procedure. "

https://www.medpagetoday.com/popmedicine/celebritydiagnosis/89475
Some interesting comments in this article following his 2018 pulmonary valve replacement OHS #2.

"So, people typically do not get their pulmonary valves replaced like he did?

" I went to sleep expecting to wake up with a small incision and woke up with a big one "

Correct. Usually, pulmonary artery or pulmonic valve problems are issues we see in children. His was an iatrogenic pulmonary valve problem, meaning we (physicians) created it."

Yes, his pulmonary valve problem was created because of the Ross, which messes with a perfectly functional pulmonary valve.

https://hcahealthcaretoday.com/2018/04/06/what-was-wrong-with-arnold-schwarzeneggers-heart/

Hi Chuck,

I feel sorry for him. I am so glad that I didnt choose to have a Ross procedure. This sounds terrible for him. I wonder if we can make this post sticky. Not to criticise the Ross but highlight the risks that can happen even for someone who is really wealthy and has access to the best medicare in the world...

 

[pellicle]

I wonder if we can make this post sticky.

I would tend to agree, but one can only make a thread sticky as far as I know. Given that I see questions being asked (within a day) directly under an identical question I wonder if people actually read here like its a resource or just ask?

Myself I like to think that in reality many people search and find answers, as we never see them join, its just the few who post that we see.

¯\_(ツ)_/¯