Several BAV questions

[ddio]

Hi everyone

I have an upcoming appointment with the cardiologist to discuss my recently discovered BAV with moderate regurgitation, no stenosis, and apparently normal heart function but I have a few questions for all you folks out there - and it looks like you are all very knowledgeable. Please excuse me if my questions are too specific to provide useful answers to.

1. I have done a good amount of research and see that my options for replacement are essentially Mechanical, Bio, and Ross. Given that I have regurgitation as opposed to stenosis it appears that Ross is mostly off the table (from what I have read). But I also notice that there is discussion of BAV repair where the surgeon would open the patient up, look at the valve and make the determination if a repair is possible at that time. According to Dr. Svensson at Cleveland Clinic about 70% of his BAV patients have the correct features for a repair. Further follow up with a couple of articles that I was able to find it appears that there is a 80% chance that the repair will last 12 years (or longer - it appeared that the study only was able to follow the patients that long) with most of the failures occurring in the first couple years. I also found publications from Cliniques Universitaires Saint-Luc in Brussels that mostly agree. Do any of the users here have experience with the repair path?

2. If the repair path is indeed a viable option, then it appears that this requires a surgeon who is skilled at BAV repairs. Where would I need to go to find a surgeon like this? I am in Portland OR and, as far as large university surgery centers go there is OHSU (Oregon Health Sciences University) in Portland and UW (University of Washington) in Seattle. Has anyone heard if either of these institutions have surgeons qualified to perform such a procedure?

3. Given that I am 38 and do get the valve it sounds like it will likely be Mechanical. From my reading it sounds like a valve infection is a serious event that results in a high degree of fatality. How does everyone protect their valves from getting an infection? Is it common for folks who are adhering to their doctors?

4. Similar question as above but with regard to stroke. How common is it for folks to have internal bleeding, strokes, or otherwise serious blood clots even when managing the coagulant correctly?

As an aside, when learning about BAV I first panicked when I read about the reduction in life expectancy but then got my bearings upon reading about the SWEDEHEART study and the specifics regarding BAV patients. I also have been able to calm myself by hearing about everyone my age and even younger who has been through the procedure and is living happy lives with the Mechanical valve.

Thanks again for all your help!

 

[Superman]

3 and 4 I can respond to but have no experience with repairs. But more importantly, some informed individuals will come along with links to studies that will answer these better. Any first hand experience is anecdotal.

3 - I’ve had a mechanical valve approaching 32 years now. I’m 49. It’s never been infected. I still take antibiotics before dental appointments as a precaution. We’ve had a couple members deal with infection, but calling it common seems a stretch. And I’m pretty sure it’s not unique to mechanical but rather just a risk of heart surgery in general. But I may be speaking out of turn on that.

4- As far as clotting or bleeding events with a well managed INR. Exceedingly rare. It’s when things aren’t well managed that these things can occur. The one event in 32 years I’ve had (blood in urine) was when I wasn’t getting to the lab like I should and let my INR get way high (close to 10 if memory serves). I held doses, got back in range, and was more diligent about testing after that. The advent of home monitoring has made management way easier as being unable to get to the lab is no longer an issue.

 

[tom in MO]

You are not ready for surgery. Some people it takes years and others never need it. What's true now may be supplanted by new technology. Enjoy life, worry about those things when the time comes

 

[Daniel758]

Great advice Tom. It can be many, many years until you need any intervention.

In 1984 I first learned that I had a heart murmur and that I may eventually need to have surgery to deal with it in the future during a routine physical for a job with the US Forest Service as a firefighter. (It did not disqualify me and I did this physically grueling job for 2 fire seasons.)

After that, I played professional poker, went to college for 7 years (while working many physical jobs and playing cards) and worked a short career in Private Equity until getting lucky and retiring early in 2001.

Then I spent 4 years with just the wife and I building a 2,700 sf house, buying and rehabbing a house for my mom, writing 3 books (thank God for editors) and ended up missing building so much (it gave me purpose and a way to give back) that I continued rehabbing houses up until around 2016 (a few heart hiccups along the way but nothing too serious) when I then went into serious decline and I got to the point I needed surgery in 2018.

Point being it took from 1984 until 2016 (32 years) to really stop me from doing what I wanted to do in life and 34 years until I had surgery... so enjoy life while you can and worry about your heart when the time comes.

And as Tom says, you may never get to that point... So why worry until you need to?

 

[AZATADINE]

Yup. I was diagnosed as a child and only needed surgery at 52.

 

[pellicle]

Hi

I have an upcoming appointment with the cardiologist to discuss my recently discovered BAV with moderate regurgitation, no stenosis, and apparently normal heart function but I have a few questions for all you folks out there

sure ...

1. I have done a good amount of research and see that my options for replacement are essentially Mechanical, Bio, and Ross.

personally I'd cross Ross off your list and my opinions are based on the simple view that:

1. why damage a valve that was fine
2. what does the ross bring that a mechanical doesn't
3. Arnie avoided a mech and picked a Ross and look where that got him.

...But I also notice that there is discussion of BAV repair where the surgeon would open the patient up, look at the valve and make the determination if a repair is possible at that time.

seems reasonable, but you wouldn't be the first I've read of being told "we'll do X then wake to find they did Y

According to Dr. Svensson at Cleveland Clinic about 70% of his BAV patients have the correct features for a repair.

well I'd say the following:

• carefully examine median age
• look to the 20 year time line (everyone seems to jump and shout when you pass a year ... to me a year is "whoopdie do" I'm hoping to live more than a year past surgery (even a year past now which is past ten years past my surgery

that there is a 80% chance that the repair will last 12 years (or longer - it appeared that the study only was able to follow the patients that long)

I always find that interesting, especially as I was part of a 29 year study on homografts

https://pubmed.ncbi.nlm.nih.gov/11380096/
and Dr O'Brien and Dr Stafford in that did my surgery at 10yo and Stafford did my homograft at 28yo

Do any of the users here have experience with the repair path?

as a 10yo mine lasted till I was 28

3. Given that I am 38 and do get the valve it sounds like it will likely be Mechanical.

that would be my advice to you too

From my reading it sounds like a valve infection is a serious event that results in a high degree of fatality.

statistically more likely with a tissue valve

How does everyone protect their valves from getting an infection?

the gold standard is antibiotic cover pre dental and other high risk of infection procedures. Dental hygene is a primary prevention

4. Similar question as above but with regard to stroke. How common is it for folks to have internal bleeding, strokes, or otherwise serious blood clots even when managing the coagulant correctly?

very uncommon, when managing correctly. The vast incidence of incidents is related to not managing correctly (for which there really is no excuse in todays self testing world).

URL for study is here.
It seems robust and well conducted:

Methods We evaluated all patients visiting the Leiden Anticoagulation Clinic with mechanical heart valve prostheses, atrial fibrillation, or myocardial infarction from 1994 to 1998. Untoward events were major thromboembolism and major hemorrhage. We calculated intensity-specific incidence rates of untoward events to assess the optimal intensity per indication of treatment. We enrolled 4202 patients for a total of 7788 patient-years.​

so as you can see in a study the rates in the green zone are very favourable, and (as I can't find the ref, so will say in parenthesis I believe to be) in line with the general age related risk of stroke or bleed.

I also have been able to calm myself by hearing about everyone my age and even younger who has been through the procedure and is living happy lives with the Mechanical valve.

I was 48 when I got my mech ... so far its not caused an ounce of issue. I lead what I'd call a "normal life"

Best Wishes





and its been way too long since I was back in Finland



but that was about 5 years after surgery.

Lastly I'll say this: bio-prosthetic is managed surgically (with replacement when it fails) mechanical prosthetic is managed by the patient and barring unusual situations will last your lifetime (as @Superman is prone to say ;-) ). There are members here (me included) who can help you with managing INR, nobody can help you with bio-prosthetic other than another surgeon.

Just some casual reading for you about warfarin I put together in 2014, you'll find more on the blog under the INR tag (if you look at it with a browser on a PC).

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Best Wishes

 

[djman]

For a younger person with well managed INR, bleeding events are not normally spontaneous. Rather, they are tied to an external event such as a car crash or a surgery. For a scheduled surgery eg colonoscopy you may setup a plan to bring INR down in the days leading up to the surgery.

 

[djman]

Agree with others. Watch and wait may be the best option right now.

 

[djman]

I am not American. But look for a high volume centre where they do a very large number of valve repair and replace. Look for a surgeon that has a lot of experience in the surgery that you need.
Look for a surgeon who is highly rated by his peers. I think that information is available in USA.

 

[Lynn]

Welcome to the forum, it sounds like you approaching your BAV diagnosis in a logical manner, despite the common roller coaster of emotions. There is a great deal of scary info in the web regarding life expectancy after valve replacement, but the SWEDEHEART study that looks at BAV patients is a bright spot for sure. That combined with hearing from all the folks on this board who had lived many years helped me to get over the anxiety of needing valve surgery.

As others have said you could be a ways away from needing surgery, but you might not be. I went 8 years post diagnosis mild stenosis and regurgitation and very little progression. And then In one year everything moved from moderate and in less than a year to severe. This seemed to surprised the docs (though my cardiologist said he has seen this fast decline in BAV patients before) but it didn’t surprise me as I knew things had changed And I pushed for faster follow up. This isn’t to scare you, what is worse than valve surgery is not getting valve surgery. Just keep an eye in how you are feeling and stay on it. Stay as fit and healthy as you can. Wishing you all the best on this journey.