New guy

[JohnnyE]

Well I had no symptoms and they were looking for something else, Doc is a cardiologist interventionist , he said your heart is strong, no damage anywhere, then he says very casual , your aortic valve has an issue, nothing wrong right now , he said it might last 5 years before going severe or 10 years or might last the rest of your life.
I was in pretty much shock at this point.
He said when the time comes we might be able to do TAVR , I am pretty certain no matter what I will not allow my chest to be cracked open, too many friends lost over the years too many strokes, some never made it out of the OR.I watched a bunch of videos on the TAVR , animations and real life videos , one of my best friends had open heart to do double bypass, he developed a cough that lasted until he died 2 years later, he told me more than once he reached for a gun under his mattress to end it, JHC this is scary.
I don't know what all the numbers mean but I looked up one part it said 10.1 mets and that looked to be a good thing?

Any help on the TAVR vs open heart
John
61 years old in pretty good shape, no other real health issues
Thank you

 

[dick0236]

Any help on the TAVR vs open heart

Welcome JohnnyE. I had my Aortic valve replaced at age 31. I've had no problems since and I continue to enjoy a normal life and lifestyle at age 81.

I visit with hospital patients weekly who have gone thru OHS and some who have had TAVR. They all seem to do well after their procedures. The TAVR patients normally are elderly(80s+). Met a patient last week who had TAVR at age 93 and he was doing very well. I've been told that TAVR is usually reserved for the very frail patient or patients that cannot undergo the standard OHS. The downside of current TAVR technology is that the valve leaflet material only lasts a couple years and is normally not used if a patient has longer life prognosis.

Standard OHS seems to be the surgical choice for most of the patients I visit (about 8-10 per week). Most of these patients have Bypass surgery but a good percentage have Valve and Valve/Bypass surgery. Most are age 65+ and the choice of valve type is normally "tissue" for that age group......while those younger than mid 50s tend towards "mechanical" valves. Ages 55-65 go either tissue or mechanical.

Do your research and choose the procedure that best serves your lifestyle

 

[JohnnyE]

Thank you , The open heart part has me scared to death, not bragging but I have never been afraid of anything in my life, the only thing that scares me is not being there for my wife, I grew up on the jersey shore, bounced at one of the toughest bars around, boxed in the ring for 63 amateur bouts and never was afraid, this is terrifying, I don't think I could force myself to walk into a hospital to get open heart surgery , the the TAVR yes, open heart not so much.
The good thing for all of us here is that med science is gaining rapidly on this issue, and since I am not showing any signs or symptoms yet I have some time (hopefully)

 

[Agian]

I don't know Johnnie. It sounds like your loved ones had bad experiences with it.

Maybe you could do what Uncle Dick does and spend some time with survivors. This might alleviate your terror. If you decide to go TAVI later on, you haven't lost anything.

 

[JohnnyE]

I don't know Johnnie. It sounds like your loved ones had bad experiences with it.

Maybe you could do what Uncle Dick does and spend some time with survivors. This might alleviate your terror. If you decide to go TAVI later on, you haven't lost anything.

Since I'm new here I assume in the waiting room means , you're awaiting a date for a fix?
Open heart or TAVR?

 

[JohnnyE]

I don't know Johnnie. It sounds like your loved ones had bad experiences with it.

Maybe you could do what Uncle Dick does and spend some time with survivors. This might alleviate your terror. If you decide to go TAVI later on, you haven't lost anything.

I think once the Doc here's of my family history he might prefer going the TAVR route?

 

[Protimenow]

I can't tell you what you should or shouldn't be afraid of. So I won't. Part of the fear may be that you'll be giving up control to a team that will take care of your OHS (if you DO opt for a valve). The people who you've lost to OHS may have been an unfortunate minority who didn't have the success that many of us have had. They may have been bad candidates for OHS at a time when there were no good alternatives. I don't know. I won't try to guess.
I got my valve replaced when I was 41 - in August, I'll have had it for 26 years.
If and when the time comes when you've got to make a decision, get good advice, and if you opt for OHS, get a good surgeon -- he or she should have a really good surgical team that can handle your case from admittance to discharge.

Sure, there are risks. Any surgery has some risk. But with a good team, you should be okay. As others have said, do some studying about risks when or if the time to make a decision comes around. There are a LOT of success stories out there - the people in this forum are just the tip of the proverbial iceberg.

 

[JohnnyE]

I can't tell you what you should or shouldn't be afraid of. So I won't. Part of the fear may be that you'll be giving up control to a team that will take care of your OHS (if you DO opt for a valve). The people who you've lost to OHS may have been an unfortunate minority who didn't have the success that many of us have had. They may have been bad candidates for OHS at a time when there were no good alternatives. I don't know. I won't try to guess.
I got my valve replaced when I was 41 - in August, I'll have had it for 26 years.
If and when the time comes when you've got to make a decision, get good advice, and if you opt for OHS, get a good surgeon -- he or she should have a really good surgical team that can handle your case from admittance to discharge.

Sure, there are risks. Any surgery has some risk. But with a good team, you should be okay. As others have said, do some studying about risks when or if the time to make a decision comes around. There are a LOT of success stories out there - the people in this forum are just the tip of the proverbial iceberg.

Thank you very much, I have been doing research since I came home Tuesday,
Which valve did you have put in, if mech do you have any issues with the blood thinners?
I have watched 100's of both types of fixes OHS & TAVR
I am thinking about going into NYC to get this done , I am looking for the right Doc now to give me a second opinion with the 1 st docs report and the video of the echo.
You you have to go on blood thinners do they effect your sex life?
I only ask because my testosterone level dropped a few years ago and I went on test therapy and we regained that part of our marriage almost like we were 25 again, I'd hate to lose that .
John

 

[epstns]

Johnny - Welcome to The Waiting Room - the virtual "room" where many folks await their own turns at valve surgery. I spent about 1 years waiting, and was crowned the honorary "Waiting Room Host" for much of that time. I have since had my aortic valve replaced, had a bypass, and am now trying to wear out my second pacemaker. I don't think the details of my case are that helpful for you to know, but there is value in your knowing that I had a rough time in surgery, had many complications in my recovery, and I am still here years later to complain about it! You should, by now, have found out that the death rate from heart valve surgery is only in the range of 1% to 2%. Those folks you know who passed away so soon after heart surgery may have had other pre-operative complications or may have had very advanced heart disease at the time of surgery. As long as you and your docs keep a close watch on your valve and you opt for surgery before any permanent heart damage is done, your odds of survival are up in that 98-99% range.

My personal opinion is that watching procedures on the web will do nothing for your confidence. That's just me. Prior to my surgery, my wife had watched countless operations but I didn't want to see any at all. I went by what I learned here, and from my doctors.

Speaking of doctors. . . where are you located? My own advice is that you should seek our the very best surgeon for your condition. For example, I had aortic stenosis and needed my aortic valve replaced. I went to one of the top heart hospitals in the Chicago area, and my surgeon was the department head of cardio-thoracic surgery there. He was one of the doctors who actually developed the particular valve I received. He is one of the very top docs in the country for the procedure. I didn't have to see him do one. I just knew he knew his stuff. I think you need that level of surgeon if you are at all unsure. I would recommend you seek such a doc at one of the nationally-recognized heart hospitals, or travel to one. Many folks on this site have traveled to Cleveland Clinic for their valve surgeries. CCF is, if I remember correctly, the top heart hospital in the U.S. It may only be my personal bias, but for heart surgery my cardio and I agreed that the local community hospital was no the place for my valve surgery.

If you've been a bouncer and have fought at a "serious" level, you are obviously not easily scared. You can be just as assured when it comes to heart surgery. Just do your homework and choose intelligently. It sounds like your doc says you're in no hurry, so use the time to learn and develop a plan for "whenever" so that you can put your mind at ease and get back to your life.

 

[JohnnyE]

Is it always needed to have a pacemaker installed with a valve replacement

 

[dick0236]

Is it always needed to have a pacemaker installed with a valve replacement

I had valve replacement at age 31.....now 81 and have never required a pacemaker. I do not believe that those disorders normally follow one another. I have developed a-fib over the last couple years but my cardio thinks it has as much to do with age as the valve and it is controlled with meds.

 

[AZ Don]

Welcome to the forum. While it is worthwhile to do your research and get informed on your condition, possible options should your condition worsen, or even a 2nd opinion to confirm the current state of your valve, it seems to me you are getting ahead of yourself. Your Dr. said your valve could last 5 to 10 years or more. You may be worrying about a surgery that you will never need. Or perhaps by the time you need it the results for TAVR will be different, or other options may be available. They are working on mechanical valves that don't require blood thinners and valves grown from stem cells that could last longer than existing tissue valves. Who knows what options might be available in 5-10 years? Until/unless your condition becomes severe, it is likely you will have few to no limitations so enjoy yourself and try not to worry. If it does get worse, it can be fixed.

 

[honeybunny]

Welcome to the forum, Johnny. I have nothing to add to the good advice you've been given. Just want to say I was born and raised in Passaic till I moved to Texas I 1979, and spent many summers at the Jersey shore (Asbury Park, mostly) with great memories. Hang tough!!

 

[pellicle]

Is it always needed to have a pacemaker installed with a valve replacement

I've had three aortic valve surgeries (one repair two replacements), I've never needed a pacemaker yet. If your surgeon is the source of this information then your surgeon is perhaps not very good.

As I understood it the main reason for a pace maker is the damage to the AV nerve cluster during surgery as this cluster is a key to heartbeat regulation.

https://en.m.wikipedia.org/wiki/Atrioventricular_node

 

[Protimenow]

Johnny:
Some answers to your questions:

When I was an undergrad at UCLA, a doctor heard a murmur. After more evaluation, they told me that I would need to have the valve replaced 'in about 25 years.' In retrospect, I should have suspected that I had a bad valve my first day of Junior High School when, after running around the track, I briefly (about 1/2 second) passed out. I didn't report it to anyone, nobody actually saw it (except for the guy that I fell into), and there were no further tests. But 25 years? That's quite a while to have something like this hanging over your head.

I've got a St. Jude valve. I'm sure that in the nearly 26 years since I've had my surgery, there have been significant improvements in it - probably less risk of clotting, etc., so what I've got may not relate too well to what you may decide to get implanted -- if you go that route.

As far as 'blood thinners' go -- it's basically a non-issue. The term 'blood thinner,' for some reason, is used to describe anticoagulants. They don't actually 'thin' the blood -- they just increase the time it takes for the blood to clot. The basic idea is that it reduces the risk of a clot forming on or in the valve. I've been taking warfarin for nearly 26 years - Dick has been taking it for about 50 years. It's not that big a deal - even though there's a lot of fear of taking an anticoagulant.

If you choose to go with a valve, and need to use an anticoagulant, I always suggest using your own meter (and possibly also a clinic or lab for occasional testing), and test weekly. It's good to have a secondary test site - either a clinic or a lab - just to confirm that your meter's results are within range of the lab or clinic results.

As far as sex goes. I was a lot younger when I had my AVR. I'll put it delicately as I can -- but with improved cardiac functioning, and the ability to pump blood more efficiently, the post-op results were better than pre-op. I take testosterone, too (a bioidentical cream, rather than the other prescription gels), and I don't know of any reasons why you can't use testosterone while you're taking warfarin (at least no reasons when you use bioidentical which, in essence, is the same stuff that our bodies produce). You shouldn't be worried about losing that portion of your life.

I agree with the others about finding the best surgeon or surgical team. I had mine in Los Angeles, and the surgeon was one of the pioneers in that type of surgery. He had a great support team. The team is an important part of the process. Choosing a hospital that specializes in this type of surgery - and does a lot of them - is probably the best way to assure a good result.

I've seen some cases where people have died on the table - but these were cases where the surgeons initially declined to do the surgery because the risks were too high. If the patient DEMANDED the surgery anyway, the results were sometimes as the surgeon predicted.

I hope this reply is helpful.

 

[epstns]

Is it always needed to have a pacemaker installed with a valve replacement

No, Johnny. Only a small percentage of us end up with pacemakers as a result of valve surgery. My surgeon wasn't particularly worried when my heart rhythm went into the dumper after surgery. He felt that if given a week or so, they could regulate it with meds. I conferred with the electrophysiologist and decided that although they might be able to correct it with meds, it might be too "fragile" to continue my lifestyle, so I opted for the pacemaker. I was also comforted by my mother's experience with her pacemaker - and we called her "The Energizer Bunny" because she kept going and going and going. . .

You probably will not need a pacemaker, but if you do, believe me, it is not an issue.