Saying hi - 41 year old with BAV and surgery "soon"

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PhillyJohn

PhillyJohn

VR.org Supporter
Supporting Member
Joined
Aug 7, 2023
Messages
24
Location
Philadelphia, PA
Hi everyone - I'm a 41 year old male who was (very) recently diagnosed with BAV after my new PCP heard a murmur at a routine checkup. After a single year of monitoring, I've been told that I should have a valve replacement "sooner than later", meaning some time in the next 6 months -- realistically it will be in March of 2024. I plan to get a second opinion, but would be very surprised if any answers were different.

The only surprising thing so far has been that, now that I'm aware of my condition, everything has started to feel like a symptom! I'm very curious to compare how I feel once the valve is ticking away in there.

Because I am so young and relatively active, my initial surgical consult more or less told me that I would very quickly wear out a tissue valve, so I'm more or less decided on a mechanical valve (probably On-X).

No big questions for the group at this time - I've been reading threads for a few days and learned a ton. Thanks for this terrific resource and support structure.
 
PhillyJohn, perfectly normal to be feeling symptoms once the light has been shed on the issue. I was categorized as severe stenosis in October 2022, climbed a 8600 foot mountain (about 2000 climb) the next day with no problem. I then had a stress echo in March 2023 which confirmed a weird feeling I was having during exercising which gradually became worse. It had to do with a bp drop which is not uncommon under stress with aortic valve stenosis. However, by early May I was noticing more shortness of breath. The point I would like to make is that the stenosis and the symptoms are not linear. I think I changed pretty quickly from last October.

I assume your echo results are in agreement with waiting until next March? You are young and unless there are other significant comorbidities your surgery risk is very very low. You might want to read up on publications around timing.

Aortic Stenosis: Mortality, Incidence, Dangers & Treatment

Once you get this behind you the more you will enjoy time with your family. Best of luck and if you have any questions please ask. My bio/history is in my profile.
 
dick0236 said:
Hi Philly John......good looking kid in your photo. My two sons were only 6 and 8 years old when I got my mechanical valve.......now they are grown men about to retire in their 60s. You will have a lot to look forward to after you handle this "bump in the road".
Click to expand...
This is such an incredibly kind comment; it's like you read my mind. I really appreciate it.
 
Survived03 said:
PhillyJohn, perfectly normal to be feeling symptoms once the light has been shed on the issue. I was categorized as severe stenosis in October 2022, climbed a 8600 foot mountain (about 2000 climb) the next day with no problem. I then had a stress echo in March 2023 which confirmed a weird feeling I was having during exercising which gradually became worse. It had to do with a bp drop which is not uncommon under stress with aortic valve stenosis. However, by early May I was noticing more shortness of breath. The point I would like to make is that the stenosis and the symptoms are not linear. I think I changed pretty quickly from last October.

I assume your echo results are in agreement with waiting until next March? You are young and unless there are other significant comorbidities your surgery risk is very very low. You might want to read up on publications around timing.

Aortic Stenosis: Mortality, Incidence, Dangers & Treatment

Once you get this behind you the more you will enjoy time with your family. Best of luck and if you have any questions please ask. My bio/history is in my profile.
Click to expand...

The non-linear escalation in symptoms definitely aligns with my experience so far. I believe my stenosis was categorized as "moderate", but it's causing overall enlargement of my heart. As a result, the initial suggestion from the surgeon was "within 6 months or so", so I'm planning on following the guidance there. For now, I'm planning the surgery around life events...but if things were to change with my condition, I'd definitely be willing to switch those priorities very quickly!
 
Welcome to the forum PhillyJohn! Thanks for sharing your story with us.
PhillyJohn said:
The only surprising thing so far has been that, now that I'm aware of my condition, everything has started to feel like a symptom!
Click to expand...
It's important to establish whether you are truly having symptoms from your valve or if it is something else. If your condition is severe and you are truly having symptoms I would not wait 7 months. See study linked below.

In this study, those with severe symptomatic aortic stenosis who waited 6 months for surgery had a 11.6% mortality rate while waiting for surgery. When you are severe with symptoms, it's time to get surgery and not delay. Not trying to scare you, but we want you be be like @dick0236 and be participating here on the forum when your 87 years old. :)

https://pubmed.ncbi.nlm.nih.gov/25240781/#:
Hopefully you are not actually having symptoms yet and it is something else.
 
Hey PhillyJohn
I am 40 and 4 months back found out I have a leaking BAV mine is moderate-severe. In the past 2 months I have noticed things are getting worse! I've noticed I cannot lift anything heavy with out my heart racing, I couldn't walk a 100 meters with out loosing my breath caring my little girl (2 years old) to the park the other day and probably the most noticeable is the stairs at home and work I am puffed when I get to the top!

I will be having my final check-up/procedure TOE on the 21st of this month, my cardiologist said surgery will be within 2 months or sooner depending on the results of the TOE.

As much as I am S$%@ing myself for this surgery I am over feeling rubbish.

I guess I will find out shortly if these symptoms are the real deal or if its all in my head : )

Best of luck with it all mate.
 
Hi

not sure about TOE ... not this one?

1691659200666.png


just kidding, I know its the fun one
1691659291531.png

nearly as much fun as an ATO audit.

RickAUS said:
I guess I will find out shortly if these symptoms are the real deal or if its all in my head : )
Click to expand...
the most dangerous stuff is in your head ...
1691659079722.png
 
Welcome Philly John!

I am also a Philly John but spelled "Jon". I live out in the 'burbs/sticks but consider "Philly" my home.

Out of curiosity if you don't mind my asking, where will you have the surgery/by who? Or are you still in the research/decision phase?

I had mine at Phoenixville Hospital but it was an emergency situation, not like I had time to research anything (I collapsed with a major heart attack at work and ended up having a double bypass and replaced aortic valve which was supposedly calcified plus was only bicuspid in the first place).

Best of luck to you. Don't fret the surgery, especially at your young edge. You'll bounce back really quick!
 
slipkid said:
Welcome Philly John!

I am also a Philly John but spelled "Jon". I live out in the 'burbs/sticks but consider "Philly" my home.

Out of curiosity if you don't mind my asking, where will you have the surgery/by who? Or are you still in the research/decision phase?

I had mine at Phoenixville Hospital but it was an emergency situation, not like I had time to research anything (I collapsed with a major heart attack at work and ended up having a double bypass and replaced aortic valve which was supposedly calcified plus was only bicuspid in the first place).

Best of luck to you. Don't fret the surgery, especially at your young edge. You'll bounce back really quick!
Click to expand...
Hello! I'm technically in the burbs too actually - but just in Narberth right outside of the city on the Main Line.

Your situation sounds really rough! I'm still in the research phase. I've been told my situation is not so dire that I need to have surgery immediately, but should do so within the next 6-12 months. Looking at March of next year at the moment, unless something changes.

So far I've been working with doctors at MainLineHealth / Lankenau, as that's where my PCP is located, and it's just where I started the whole journey. I chose my primary doc from the website quite literally because he had the nicest smile, and seem to have accidentally found a terrific doc. They've been really great so far and I may end up sticking with them. I do plan to speak with a surgeon at Penn as well, though, just for a second opinion.

I appreciate the kind words - definitely quite a scary situation, although as I've told all the doctors so far, I'm very grateful to have found out this way than the "other way".
 
Chuck C said:
Welcome to the forum PhillyJohn! Thanks for sharing your story with us.

It's important to establish whether you are truly having symptoms from your valve or if it is something else. If your condition is severe and you are truly having symptoms I would not wait 7 months. See study linked below.

In this study, those with severe symptomatic aortic stenosis who waited 6 months for surgery had a 11.6% mortality rate while waiting for surgery. When you are severe with symptoms, it's time to get surgery and not delay. Not trying to scare you, but we want you be be like @dick0236 and be participating here on the forum when your 87 years old. :)

https://pubmed.ncbi.nlm.nih.gov/25240781/#:
Hopefully you are not actually having symptoms yet and it is something else.
Click to expand...
Sorry for the late reply -- my symptoms are just some shortness of breath at times, and I've been told that I am not yet in the "severe" category. My valve is "not stenotic, but sclerotic" - so, things aren't awesome, but from what I understand I still have a bit of runway.

I don't intend to race the clock or take any undue chances for sure!
 
PhillyJohn said:
Hello! I'm technically in the burbs too actually - but just in Narberth right outside of the city on the Main Line.

Your situation sounds really rough! I'm still in the research phase. I've been told my situation is not so dire that I need to have surgery immediately, but should do so within the next 6-12 months. Looking at March of next year at the moment, unless something changes.

So far I've been working with doctors at MainLineHealth / Lankenau, as that's where my PCP is located, and it's just where I started the whole journey. I chose my primary doc from the website quite literally because he had the nicest smile, and seem to have accidentally found a terrific doc. They've been really great so far and I may end up sticking with them. I do plan to speak with a surgeon at Penn as well, though, just for a second opinion.

I appreciate the kind words - definitely quite a scary situation, although as I've told all the doctors so far, I'm very grateful to have found out this way than the "other way".
Click to expand...

Lanekau has a great reputation as a heart place, especially the surgeons. I used to work there many years ago btw, when I first got out of college. Have also seen some cardio Drs there over the years although one of them was one of the worst I've ever encountered (long story, he was a young guy who had no idea what he was doing). You'll do fine there but getting a 2nd opinion at Penn doesn't hurt either.

P.S. Since you are in Narberth, if you like chinese food you need to checkout Sang Kee on Lancaster Pike in Wynnewood, just down the road from Lankenau. It's awesome!! Best Chinese I've had outside of Chinatown in downtown Philly. Then there's my fave pizza place nearby Narberth as well (in Manoa, Boston Style Pizza!). But I digress. Get taken care of then treat yourself to some nearby great chinese food & pizza!!
 
Nothing to stress about, get it done asap so it's not living in your head. I am 38 and couldnt walk to the top of a hill on our property without my heart racing and short of breath. I'm 8 months out from avr and I feel great.
 
PhillyJohn said:
Hi everyone - I'm a 41 year old male who was (very) recently diagnosed with BAV after my new PCP heard a murmur at a routine checkup. After a single year of monitoring, I've been told that I should have a valve replacement "sooner than later", meaning some time in the next 6 months -- realistically it will be in March of 2024. I plan to get a second opinion, but would be very surprised if any answers were different.

The only surprising thing so far has been that, now that I'm aware of my condition, everything has started to feel like a symptom! I'm very curious to compare how I feel once the valve is ticking away in there.

Because I am so young and relatively active, my initial surgical consult more or less told me that I would very quickly wear out a tissue valve, so I'm more or less decided on a mechanical valve (probably On-X).

No big questions for the group at this time - I've been reading threads for a few days and learned a ton. Thanks for this terrific resource and support structure.
Click to expand...

Hi John,

I'm 43 yo and had AVR surgery with a mechanical aortic valve last July. Honestly nothing has changed for me apart from being a Cyborg now :) Good choice on the mechanical given your age, it's the main reason I went with it and not having to have another surgery down the line.

Post OHS all the issues with my heart all vanished and returned within normal ranges after 6 months.

For me, the first 3 weeks post OHS were the hardest. But once I got into week 4-5 and beyond things started to improve and by week 6 I felt pretty much back to normal. Your young age should also aid in your recovery too.

Any questions pls reach out.

Cheers!
 
Thanks for everyone's kind words on this post. Almost immediately after posting this my symptoms got somewhat worse, so I met with my surgeon today. I've scheduled my valve replacement (with an On-X valve) for Nov 29th. I felt pretty well informed going into the discussion with my surgeon because of a lot of the things I'd read here, though I'm sure I'll have some more questions as the day draws closer.

I would be freaking out right now if it weren't for this forum and all of you, so I really appreciate the time everyone's taken to share experiences.
 
PhillyJohn said:
Thanks for everyone's kind words on this post. Almost immediately after posting this my symptoms got somewhat worse, so I met with my surgeon today. I've scheduled my valve replacement (with an On-X valve) for Nov 29th. I felt pretty well informed going into the discussion with my surgeon because of a lot of the things I'd read here, though I'm sure I'll have some more questions as the day draws closer.

I would be freaking out right now if it weren't for this forum and all of you, so I really appreciate the time everyone's taken to share experiences.
Click to expand...
Good luck with the valve choice. Stay calm and relax.
 
They really can work miracles with this valve stuff -- my two youngest kids and I would all be dead without modern medicine, and instead I've seen them grow into wonderful young adults, not to mention getting to see the older three grow up. I am so grateful. Best of luck and all my wishes for smooth and successful procedure and a strong recovery.
 
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