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

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I completely agree. Exactly what I'm doing right now! Heart cath in a few hours.
I just wanted to add for those who are yet to have a heart cath, don't sweat it. I had mine without any anesthesia except for a shot to numb the area where they make the insertion. If I have to have another in the future, I will still ask for no anesthesia. You can also ask for minimum necessary and they will only give it if you start to feel pain and ask for it. When I had TAVR, I asked for minimum necessary and was fine as the valve was moved through the artery, but when it got to the heart and they had to maneuver it around, I asked for anesthesia. The TAVR heart valve is much larger than what is used for a heart cath.
 
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.

I noted in another post what a disservice, I believe, this doctor is doing in giving misleading, non scientific based anecdotes against mechanical valves. It is really as if he is intentionally trying to drum up fears and promoting myths based on random comments from a message board. What medical professional would ever do such a thing? No examples of people who have successfully had mechanical valve- who aren't suicidal from the ticking? Who don't wear gloves around the house, who feel totally comfortable wearing a bikini at the beach, and who don't fear driving, or who still get an erection, despite being on warfarin? Talk about misleading fear mongering!
Another example of how I question how much of a scientific mind he has is some of the case studies he presents near the end and suggests that the audience, presumably cardiologists and surgeons, answer his question as to which valve to choose. A 48 year old patient is presented whose biological mitral valve only lasted 8 years and needs a reoperation. biological or mechanical. When one of the doctors answers mechanical, based on the patient's age, the presenter countered that this was not good thinking because the patient was not likely to need mitral valve reoperation with a biological mitral valve. To support this, he presents a study showing that life expectancy is only 15 years after mitral valve surgery, for "all comers". Why would you use all comers data when the patient is only 48 years old, almost certainly much lower than the average age of a mitral valve replacement patient? Even though the patient's first biological valve only lasted 8 years, the presenter argues that the chances that this 48 year old would need another valve operation, should he choose biological, is only 20-30% and the reason that this is so low is that the patient would likely be dead by then. I am totally unconvinced with how he uses selective studies to support this claim, that have very little, if any, application to the patient in question. You can't use an "all comers" study to predict life expectancy for a 48 year old. Keep in mind, the previous bio valve only lasted 8 years, so if the next one also lasts this long, it would take the patient to 56. So, the logic behind concluding that the patient will only have a 20-30% chance of outliving another biological valve is flawed at best, in my view. Take a look at the study linked below with younger mitral valve patients: 74.3% 15-year survival for mitral valve replacements in patients aged 18 to 50. https://www.jtcvs.org/article/S0022-5223(17)31770-1/pdf

So, in my humble opinion, I think the analysis for this patient was flawed.

Usually when a presentation like this is given, it is customary for the presenter to give their conflicts of interest, in fact, I believe most medical platforms require this. I was really curious about whether there are some conflicts of interest with Dr. Anyanwu. None given before the presentation, in which he cherry picks gloom and doom data. So, out of curiosity, I checked his bio at Mt Sinai. Please note that there is a link for industry relationships on Dr. Anyanwu's bio page and here is what it says:


"Physicians and scientists on the faculty of the Icahn School of Medicine at Mount Sinai often interact with pharmaceutical, device and biotechnology companies to improve patient care, develop new therapies and achieve scientific breakthroughs. In order to promote an ethical and transparent environment for conducting research, providing clinical care and teaching, Mount Sinai requires that salaried faculty inform the School of their relationships with such companies.

Dr. Anyanwu has not yet completed reporting of Industry relationships."


So, according to his bio, he has been with Mt. Sinai since 2004 and has not yet completed their industry relationship reporting, which they require? I have no way of knowing if this doctor has conflicts of interested. Given his, in my view, very skewed presentation, I am really curious to know if he has any.
 
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Don’t know what you’re talking about. I’m talking about intimidation! 😂
If I do lose my ability to get an erection once I am on warfarin, it is most likely going to be due to the fact that now I can't get the image of you in a bikini out of my mind, and not due to the medication! 🤣
 
If I do lose my ability to get an erection once I am on warfarin, it is most likely going to be due to the fact that now I can't get the image of you in a bikini out of my mind, and not due to the medication! 🤣

Funny story. Less than six months after my last open heart, we took a family vacation down to Disney World. My scar was still rather pinky/red against my pale white Michigan winter skin. Plus a shoulder scar because of how they had to run the heart/lung machine with the aorta being replaced. Add to that, I was recovering from a rather nasty infection that had worked it’s way up my lymphatic system starting at my finger tip to half way up my forearm before they figured it out and got the right meds going. Gross lumps and bandages on my arm.

I got some looks from kids at the resort pool! Must have looked like Frankenstein’s Monster towering over them at 6’4” with all my scars! I’m much better now.
 
Oh my god I really really wish I had not watched that video. Having a massive anxiety / panic attack ;-(
Please take a look at my criticisms of this presentation and do not be discouraged by this doctor's doom and gloom approach. Look at the outcome data yourself and not the cherry picked studies he uses. Outcome studies with an average age of patients of 80 years old have no significance for people in your age group, which is the same as mine. Take a look at this study:
Loss in Life Expectancy After Surgical Aortic Valve Replacement: SWEDEHEART Study


https://www.jacc.org/doi/full/10.1016/j.jacc.2019.04.053
Yes, those in all age groups have a lower life expectancy after surgery, but it is less than you might think. In our age group, we have a lower life expectancy of about 3 years. Not only that, you can almost certainly tilt the scales to overcome that with healthy living: be in the group that takes your medication, not the 50% or do that does not; be in the group that controls your blood pressure and BMI. Be in the group that gets regular medical check ups and controls your lipids with diet and exercise. I put my stats into a life expectancy calculator and it came up that I would probably live to be 93. If I subtract 3 years from that I make it to 90- I am good with that and I bet I can better that with very healthy living and staying on top of my medications. Of the 3 years loss of expected life expectancy, one wonders how much of that is due to not taking meds or not managing INR properly? A significant amount I would expect.

You will get through this!
 
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Funny story. Less than six months after my last open heart, we took a family vacation down to Disney World. My scar was still rather pinky/red against my pale white Michigan winter skin. Plus a shoulder scar because of how they had to run the heart/lung machine with the aorta being replaced. Add to that, I was recovering from a rather nasty infection that had worked it’s way up my lymphatic system starting at my finger tip to half way up my forearm before they figured it out and got the right meds going. Gross lumps and bandages on my arm.

I got some looks from kids at the resort pool! Must have looked like Frankenstein’s Monster towering over them at 6’4” with all my scars! I’m much better now.


" I’m much better now."

I got better

 
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.

I am a law enforcement officer. I run almost daily. I mountain bike and crash weekly. I find the extra blood to be good for photographs. I barely notice my ticking. I'm in the top 1% nationally on Waze for the miles I drive. My noodle is very functional.
 
I am a law enforcement officer. I run almost daily. I mountain bike and crash weekly. I find the extra blood to be good for photographs. I barely notice my ticking. I'm in the top 1% nationally on Waze for the miles I drive. My noodle is very functional.

" I mountain bike and crash weekly."

Dodger Fan,
I find this fascinating. You crash weekly? Some make it sound like mountain biking and other such physical activities are totally out on warfarin, because if you happen to crash you're a goner. You really crash weekly and recover fine on warfarin? This is very helpful information. I honestly am still going back and forth. Dr. Shemin told me to focus on deciding whether to get the surgery now or to wait. He said once that decision is made I can literally tell him the morning of surgery which valve I want to go with. Today I watched the very persuasive presentation by Doug Johnson of Cleveland Clinic and two other surgeons about the Edwards Resilia valve- I first watched it a year ago and it tilted the scales towards the Resilia for me- watched it again a few months ago and a third time today. It certainly gives the "hope" that the Resilia will last a long long time and is a good option for those of us in our 50s. It makes me think seriously about it again- having said a couple of days ago that I am 90% or so in the mechanical valve camp. I can clearly see that it is really more of an infomercial, but the data presented is real. What I am saying is that I am still not fully decided on which valve to go with. I do believe that mechanical, most likely, will give the best hope of a normal life expectancy for someone my age, 53, but not 100% decided still. Mountain biking and crashing weekly on warfarin and to hear that this is not fatal- this is very important information to hear. So, I take it you don't feel the need to wear gloves around the house nor are afraid to don a bikini?

The Edwards Resilia Valve presentation (infomercial kind of)

 
I was a pretty regular mountain biker in my late teens and twenties while on warfarin in the days before home testing. I’ve gone over the bars a few times. Have a scar on my shin from a nasty cog bite. Still don’t know exactly how it happened, because it’s on my left leg. Back in the 1990’s I had a Specialized Stumpjumper with a Manitou Mach 5 suspension fork. It was a nice rig for its time.
 
I was a pretty regular mountain biker in my late teens and twenties while on warfarin in the days before home testing. I’ve gone over the bars a few times. Have a scar on my shin from a nasty cog bite. Still don’t know exactly how it happened, because it’s on my left leg. Back in the 1990’s I had a Specialized Stumpjumper with a Manitou Mach 5 suspension fork. It was a nice rig for its time.
That really makes me believe I will be able to have a very active life if I choose mechanical. Thanks for sharing that. I know I'll have to quit the MMA team, as head strikes I imagine have to be out. I actually really am on the MMA team at Dan Henderson's gym. Tried out and legitimately made the team at 49- oldest guy on the team by far. I love sparring hard in several disciplines very much, but to be able to continue that means going biological, and I really don't want repeat surgeries. Plenty of other fun stuff to do if I go mechanical, and from what I am hearing, some of it is very physical.
I like scuba diving, lobster hunting and spear fishing- ever been told not to scuba dive on warfarin? I could see myself getting more focused on that once again.
 
I have been using warfarin for nearly 38 years and I have scuba dived ,skied extensively and road biked all over the world. I did have a fall about 15 years ago at about 20 mph and got a dramatic hemorrhage in my leg which took about 6 weeks to clear. So yes you can bleed more but relatively rarely.
Don’t recommend head injuries however. I think the video on mechanical valves is way way off the mark. I think the statistics were cherry-picked and very misleading. I had a tissue aortic valve placed in 1977. Lasted 5 1/2 years. Then St.Jude x 2 with the second needed due to re op for aneurysm.
Every time there is a procedure there are risks. So fewer procedures have benefits. There are plenty of complications with TAVR. Leaks,emboli,and even heart block. So there is no free lunch.
If there was clearly the “best procedure “ that would be the only one performed. So each person tries to make their best choice for themselves.
 
I have been using warfarin for nearly 38 years and I have scuba dived ,skied extensively and road biked all over the world. I did have a fall about 15 years ago at about 20 mph and got a dramatic hemorrhage in my leg which took about 6 weeks to clear. So yes you can bleed more but relatively rarely.
Don’t recommend head injuries however. I think the video on mechanical valves is way way off the mark. I think the statistics were cherry-picked and very misleading. I had a tissue aortic valve placed in 1977. Lasted 5 1/2 years. Then St.Jude x 2 with the second needed due to re op for aneurysm.
Every time there is a procedure there are risks. So fewer procedures have benefits. There are plenty of complications with TAVR. Leaks,emboli,and even heart block. So there is no free lunch.
If there was clearly the “best procedure “ that would be the only one performed. So each person tries to make their best choice for themselves.
Thanks for sharing about your active lifestyle. I love to ski, scuba dive and bike, so it is really encouraging to hear that you are so active in those areas. Falling at 20mph is always dangerous, but I am sure even more so on warfarin. I agree that the video is way off, from what I've learned from the many folks here. It seems that those that paint such a horror story for warfarin are either very misinformed or have an outright agenda of some sort. If I go biological it will be the Resilia, but I am finding the argument for mechanical a stronger one at my age of 53. I would really like to avoid re-operation if at all possible. It sounds like I can have an active life on warfarin and I know that I would not mind self managing at all.
 
Chuck---so much great info--have you made up a pros and cons list of mechanical vs non ? How would you choose between different non mechanical valves ? Thanks !
 
Hi Chuck,
I've had two cath procedures and then an open heart procedure a month ago. I agree with what I'm seeing others saying in going ahead and doing the surgery before you show symptoms so that there is minimal damage to your heart muscles. However, I would also point out that, depending on where you live, COVID will likely change the way you experience the procedure and your recovery. If it is possible for you to wait until the vaccine is more widely distributed, you will likely have a more "normal" experience.
 
Hi Chuck,
I've had two cath procedures and then an open heart procedure a month ago. I agree with what I'm seeing others saying in going ahead and doing the surgery before you show symptoms so that there is minimal damage to your heart muscles. However, I would also point out that, depending on where you live, COVID will likely change the way you experience the procedure and your recovery. If it is possible for you to wait until the vaccine is more widely distributed, you will likely have a more "normal" experience.
That is a good point. All of the medical staff have had the opportunity to be vaccinated and I would imagine at a major clinic like this that they would be near 100% compliance- I sure hope that they don't let any anti-vaxxer staff near me in recovery. There are a few of those around, although far fewer in the medical community. I had Covid in June and as of 3 weeks ago still had a high level of antibodies. I may be able to get one jab a couple of weeks before the procedure, which a new study has suggested gives an enormous boost of immunity to Covid and mutants for those who have already had Covid. I believe I will be well protected from it in recovery, although some limitations on visitors are still in place. UCLA recently moved to allowing one visitor per day in recovery, so that will be nice.
 
Chuck---so much great info--have you made up a pros and cons list of mechanical vs non ? How would you choose between different non mechanical valves ? Thanks !
Yes I have. At the moment the list favors mechanical, primarily because the data seems convincing to me that this will give someone my age the best life expectancy. If I go tissue, it will be the Edwards Resilia, because of the treatments which are designed to slow down the calcification process for the tissue they use and the hope that it will last longer than the 10 years, which someone in their 50s generally gets from a biological valve. But, at this point it would be just "hope", as the longest human trials have only 5 years of outcomes reported.
 
Update: I'm getting my valve replaced in the next month. No set date yet.

I made my decision after consulting with my cardiologist and getting a second opinion from a second one and consulting with my surgeon. I have also had much valued and appreciated input from many of the members here on the forum.

Here are the reasons why I decided to get the surgery now, instead of waiting for symptoms:

-Significantly favorable statistics for getting surgery before symptoms, once a patient has crossed the severe threshold. Long term risk of mortality is HR = .38 for surgery before symptoms.
-Structural changes have already happened in my heart to adapt to the high pressures. My changes are only minor at this point, for example LV wall thickness of 1.1cm. This is not in the danger zone yet and will almost certainly return to the normal range of <1.0cm.
-There are very high pressures in my heart right now, with a mean pressure gradient of 45mmHg and a peak pressure gradient of 75mmHg. This is certainly in the severe category, but I am still below the threshold of 50mmHg (mean), which there is data to suggest there are better outcomes getting surgery before you are >50mmHg at the mean. In the past 6 months it went from 40mmHg to 45mmHg, so it appears to be increasing quickly.
- My peak jet velocity is 4.36 m/s. Anything over 4.0m/s is severe. There is data to suggest that outcomes are significantly better if surgery occurs before it reaches 5.0m/s. 18 months ago my velocity was 3.1m/s, so this represents a considerable increase in velocity.
-My AVA went from 1.1cm2 to .87cm2 in the past 6 months. Like my other metrics, this is severe and represents a quick progression. I am concerned that progression at this rate could put me into the critical stage within 6 months.

-My ejection fraction is still good at 63%. Studies have shown better outcomes if one gets surgery before it falls below 50%, as that would indicate that the left ventricle is moving towards heart failure from being overworked. I like the idea of not needing to worry about EF recovery, when EF is still preserved.

The hard part is that I still am not experiencing any slowing down with very much above average cardio ability- I climb a 1200 ft mountain 5x per week. Maybe I am getting this a little too early? But, I have always said that I would rather get surgery 6 months too early than 6 months too late.

Symptoms. I have noticed a very slight tightness in my chest that comes and goes. I have also been under a lot of stress and I would normally chalk this up to being stress related. I would not call it painful at all- just feels like something is going on there. If I am being conservative, I am going to call this an early symptom. It would be so easy to ignore, as it is so minor and goes away quickly, but I think that it would be very risky to dismiss this in the event that it is valve related.

-If I put things off, if my valve progresses at all like it has been, I can't imagine being able to put it off more than 6 to 12 months. If I do so, at the risk of potentially having irreversible structural damage, what have I really gained by kicking the can down the road that little bit. Things have not been easy once I had the knowledge that I crossed the line into severe- it is a little harder to get a good night sleep. I think this will be the norm if I delay, constantly asking myself "Is this a symptom? Am I slowing down?"

-I have decided to go mechanical with a St. Jude valve. I want to minimize the chances of needing a reoperation- a near certainty if I go biological. The Edwards Resilia is very tempting, as it would allow me to continue with my combat sports and resume training for the Jiu Jitsu world title (in my age category) and resume my kickboxing. But, having learned such great feedback from those here on the forum about the active lives that you are able to lead on warfarin, I know that there will be plenty of activities that I enjoy that I will still be able to do. I plan to self monitor my INS and believe there is good data to suggest that the risks of warfarin are drastically reduced for those who carefully self monitor. It is a choice to give up some things that I love now, in order to have the best chance of avoiding valve related surgeries in my future.

Thanks again for all of the great feedback! This forum is great!
 
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