Aortic valve repair or replacement, early 2020

[Astro]

Johnmarkos, best wishes with your planning. Hopefully you will remain too busy to over think things.

Since I first read your post, I have been wondering, why when you were 17, your girlfriend‘s father listened to your heart. Was this some “meet the parents” moment before the polygraph test?

 

[johnmarkos]

Thanks! The surgeon says he won't try to do the repair unless he's confident he can get it to a very good state. He thinks the odds are about 50/50 that I'll end up with a repair. Otherwise, I'm getting a mechanical valve.

He also told me that repairs to bicuspid aortic valves are pretty new, so there's no twenty-year data. He said that the data they do have shows them performing quite well, with expected lifespans longer than those of bovine or porcine valves. He thinks it should last 15-20 years or more, even in someone relatively young and active like me. That gets me into my mid-late 60s, and at that point, I could have a TAVR, which could get me into my 80s.

"And then what?" I asked. I guess the answer is whatever they're doing in the 2050s.

If you do a repair, you're betting that, by the time your repair fails, there will be better technology available than you can get today. For example, perhaps a new valve that won't require warfarin will be available. Perhaps a new medication that replaces warfarin and doesn't require weekly INR testing (and that doesn't cost as much as a Chevrolet every year) may be on the market. Perhaps a new transcatheter repair valve will be available with an expected 50 year lifespan.

It may not be that big a gamble to wait -- if the 'repair' doesn't damage your heart while it's failing.

OTOH - you can consider going with a mechanical and probably not having to worry about another surgery (barring things like aortic aneurism and other things unrelated to the valve).

Good luck, whatever route you decide to take.

 

[johnmarkos]

Well, he's an orthopedic surgeon, and at one point he set a broken hand for me at his house. That might have been when he listened to my heart, but she and I used to spend a lot of time at both of our houses when we were dating, so I saw her family a lot. It could have been any one of countless times I was over there.

We broke up in college, but remain friends to this day, and I still keep in touch with her family. They're good people.

Johnmarkos, best wishes with your planning. Hopefully you will remain too busy to over think things.

Since I first read your post, I have been wondering, why when you were 17, your girlfriend‘s father listened to your heart. Was this some “meet the parents” moment before the polygraph test?

 

[johnmarkos]

My surgery date is a little more than two weeks away now -- feeling good and ready.

 

[johnmarkos]

I do have BAV, but do not currently have aortic aneurysm, knock on wood. I do have severe regurgitation and an enlarged left ventricle, which was the deciding factor for surgery.

Things for people become less predictable as they age, and so its entirely possible that you may need another surgery in your future, the one thing which commonly drives that (and in terms of priority drove my 2011 surgery timing) is aortic aneurysm. It may be that you have that murmur from BAV or it may be that you have it from a childhood bout of scarlet fever or some virus, but if its BAV then your team need to begin investigation also if you have any signs of aortic aneurysm. You may not but that could take one more reoperation driver off the table.

 

[pellicle]

My surgery date is a little more than two weeks away now -- feeling good and ready.

Glad to hear that. Life will get better when its fixed

Best Wishes

 

[dick0236]

I do have BAV, but do not currently have aortic aneurysm, knock on wood. I do have severe regurgitation and an enlarged left ventricle, which was the deciding factor for surgery.

Hi John. Your diagnosis sounds a lot like mine when I was a young man.......severe regurgitation, enlarged heart, BAV or Scarlet Fever (maybe both) and no mention of an aneurysm......which did not appear until 50 years after surgery. You have tracked your problem for a number of years and soon you can put it behind you and enjoy a pretty normal life. Good Luck with your upcoming surgery.

 

[JWalters]

I had a murmur since childhood ... some doctors heard it, many didn’t. No one thought to investigate down the years what caused it. In 2015, aged 56, my bicuspid was ‘discovered’ during a routine echo for the increasing heart palpitations I’d been getting. I was then told I had moderate valve stenosis and would eventually need open heart surgery, possibly within a few years.

Does it seems archaic to anyone else that the typical way to detect non-symptomatic heart valve issues is for a semi-qualified PCP to listen to the chest ? Seems like a 50/50 chance to have a physician that can actually hear a murmur (and do all valve issues 'murmur' ??). I don't like those odds. Many of us here were lucky to be on the right side of that coin flip. I tell anyone that hears my story to ensure you have a good PCP, don't skip your physicals, and push for more sophisticated tests if you have concerns.

 

[Protimenow]

For me, it took a dozen or more doctors and med students to hear my murmur. It was a medical student, when I was an undergraduate at UCLA to hear the murmur. In retrospect, shouldn't other students, or their teachers, have previously heard it?

Technology may be in a place where, with a good audio pickup, and appropriate software, murmurs should be detected - leaving little chance for a half-deaf, or insensitive doctor to miss a murmur or other sign of possible cardiac problems. Artificial Intelligence, machine learning, neural networking, and other technologies that I cover should be able analyze heart sounds and detect issues. (Maybe I'll be able to work with one of the chip makers or medical equipment makers to make this happen).

It would be nice to be able to eliminate false negatives from medical professionals, BEFORE heart enlargement or other issues relating to bad valves or other heart problems happen (or, at least, to inform the patient of possible issues to be concerned about in the future).

 

[bizinsider]

I'm right behind you, John. Just had my latest MRI a week ago and the Sinus /Valsalvas has expanded to 4.9cm for 4.6cm/ascending aorta is 4.9cm (per the reports, not read by a surgeon) and my left ventricle has been borderline dilating. I'm also bicuspid, asymptomatic, exercise regularly 67 yo. Rethinking where I plan to have mine done. Had been focused on C-Clinic or Mayo, but since I'm in CA now considering Dr. Castro in RC. I'll see my cardiologist in a week to get his latest view on this. I keep thinking my increase in ocular migraines is a sign! I will be watching your progress!

 

[johnmarkos]

A week and some hours away now -- I have my CTA scan scheduled for Thursday, January 2nd, and then I'm supposed to prep for surgery on Monday, the 6th. I have to arrive at 5:30am on Tuesday the 7th for surgery.

I have to wrap up a bunch of stuff at work, too, before I go on medical leave, so I don't overburden my colleagues.

My parents are in town and are staying through January to help out while I'm recovering. My sister and her sons (15 and 19) are here for the holidays, too. It's been a nice time. My own kids are 12 and 14, and they're all a lot of fun at this age. Last night, they were up late singing and playing "Creep" and "Boulevard of Broken Dreams" on the ukulele and guitar.

 

[johnmarkos]

Yes! After one doctor heard my murmur when I was 17, none of the several doctors who listened to my heart heard it afterwards until I was 40!

When I was 17, he was quite adamant that I had a murmur, nevertheless, and correctly so! He said it was obvious. So good on him for hearing it, or bad on all those other doctors for not hearing it?

Does it seems archaic to anyone else that the typical way to detect non-symptomatic heart valve issues is for a semi-qualified PCP to listen to the chest ? Seems like a 50/50 chance to have a physician that can actually hear a murmur (and do all valve issues 'murmur' ??). I don't like those odds. Many of us here were lucky to be on the right side of that coin flip. I tell anyone that hears my story to ensure you have a good PCP, don't skip your physicals, and push for more sophisticated tests if you have concerns.

 

[tom in MO]

If they don't hear your murmur, it could have changed. My murmur has been there since birth. My GP for 20-40 yo heard it and then told me one year he couldn't hear it, then it came back. I had a BAV, so maybe as the stenosis changed over time, the sound did as well. When I was at the end, before surgery in a teaching hospital, they had all the interns come in to listen to my heart murmur as part of their training.

 

[carolinemc]

If they don't hear your murmur, it could have changed. My murmur has been there since birth. My GP for 20-40 yo heard it and then told me one year he couldn't hear it, then it came back. I had a BAV, so maybe as the stenosis changed over time, the sound did as well. When I was at the end, before surgery in a teaching hospital, they had all the interns come in to listen to my heart murmur as part of their training.

We have something in common, murmur since birth. I had years of experience of being one of several children that was trained on at Children's Mercy Hospital in KCMO. I felt like a guinea pig at times. LOL! I had four cardio's there, two where teachers'. They were the best. The surgeon knew how to talk to us kids back then, 1973. I hope to never have the murmur again, since the replacement with St. Jude's, but I know someday in the future, it could come back. I know what is sounds like and hope to never hear it again.

 

[johnmarkos]

I had my CTA scan today (Thursday). Because there was lots of activity happening in the waiting area for the scan, it was hard for me to relax. They ended up giving me multiple beta blockers to get my heart rate below 60. I was surprised that they require a heart rate below 60, given that the median resting heart rate is in the 70s. Mine is in the high 50s, but not in the middle of the day. Later in the evening, while I was drinking a decaf coffee in a café, hanging with my family, and listening to some live jazz, I noticed my heart rate was 51. At the hospital, they should provide a chill room, or at least noise canceling headphones, pleasant music, and a closed curtain.

I took prednisone and Benadryl and didn't break out in hives -- the CT tech and nurse both said the dye they use is different from what they used in 1987, so maybe I wouldn't be allergic now anyway.

 

[Suckyvalvegurl]

My heart murmur came and went according to the different docs. Some heard it and some did not. Until it got really loud.

My CTA was done during my day before surgery pre-op. They didn't require my heart rate to be that low (probably was 60's) as that was my usual. They did have to hydrate me 1st because of the dye from the heart cath 2 days prior. When is your surgery and what are you getting?

 

[johnmarkos]

Tuesday the 7th -- either aortic valve repair or replacement with a mechanical valve -- surgeon says 50% chance of either.

When is your surgery and what are you getting?

 

[Catie]

It's very soon now. Wishing you the best for surgery and recovery. And peace of mind/heart between now and then.

 

[pellicle]

Tuesday the 7th

I'll keep my fingers crossed for a good outcome on the day

 

[KSS]

You are going to do fine, especially since you are already in great shape. Waiting for my surgery date was the hardest part for me. I had come to terms with the fact that I would have to have surgery (had mine Nov 18th) and I just wanted to hurry up & get it over with!
It’s interesting about the murmur because I had the same experience. Over a span of 40 yrs, a couple of drs could hear it, but most did not! I just got lucky that a young, but thorough dr caught it in 2017 & referred me for an echo. At that point the murmur was louder & was moderately stenotic.