New BAV dx and super scared :(

[Spookygal]

Hi all, happy to find somewhere to vent/get some information about likely the rest of my life lol

I’m a 34/F nurse from New Jersey and last year I was diagnosed with BAV. Here are some excerpts from my imaging:

“The heart is normal in size. The ascending aorta is top normal in caliber and measures 3.6 cm in diameter at the level of the pulmonary artery bifurcation with the descending aorta measuring 1.9 cm at the same level. There is no significant pericardial or pleural effusion. There is no significant mediastinal or hilar adenopathy. No suspicious parenchymal mass lesions are noted in the visualized lung parenchyma.
5. The left atrium is normal in size with a volume of 52.8 mL.
6. The right atrium is normal in size with a volume of 50.4 mL.
7. The aortic valve is bicuspid with fusion of the left and right coronary cusps.
8. Mild aortic regurgitation. Regurgitant volume is 28 mL. Regurgitant fraction is 28%.”

Basically this all hit me like a ton of bricks and out of nowhere as I was just at my yearly check up and my NP heard the slightest heart murmur and had me get a work up. Lo and behold. Of course I went down a Google rabbit hole and now I am waiting until the day I’ll need open heart surgery. I’m a bit of a hypochondriac so this had been tough on me mentally!

Tomorrow I get my repeat scans to see if anything’s changed. I’m not crazy about my current cardiologist as his bedside manner kind of sucks and he didn’t really explain things well enough for me the first time around. Just “if your aorta gets to 4cm we’ll be looking at surgery. Have a good day”. WHAT!?! I nearly puked!

I’m so worried my scans are going to be worse this time. Also, can’t tell if my new worsening symptoms are real, anxiety or just out of shape. SOB, lightheartedness, etc.

Either way, glad to be here and hopefully have some reassuring words from you guys.

Thanks for listening

 

[Deidra]

Hey Spookygal! Thanks for posting. Welcome to the forum (and the BAV club).

I'm sorry to hear about your rough experience with the cardiologist! I know it can definitely be a huge shock to receive this news. I also have BAV, mine has severe regurgitation, I'm 28. It's been followed since I was a kid but started having issues around 24. I'll probably be having surgery in the next year or two and I'm pretty excited to get it over with but my case is a bit of an outlier, lots of people on this forum didn't have problems with theirs until their 50s.

I'm also a hypochondriac and I relate to being very suspicious of any weird feeling in your body after getting a new diagnosis, especially this one. Still happens to me after every single cardiology appointment. Given the numbers you posted, I would be surprised if your condition is causing any significant symptoms, but obviously I can't say for certain. I have no symptoms other than intermittent fatigue despite my regurgitation being severe!

Few important things that come to my mind in terms of your situation:

- You're following through on the problem with a cardiologist and getting it checked up, that's the most important thing and you're doing it! So great work and I hope you keep that up. The worst thing to do with stuff like this is to not get it checked/not follow up on it.
- It seems like everything is pretty normal for the moment other than mild regurgitation which is fairly common and not a huge deal, as far as I understand. I know you said you're getting a new echo soon, I hope you keep us updated on the results.
- BAV and related aortic diseases have very very effective treatments compared to many other diseases. Aortic Valve Replacements and other procedures like VSRR or the Bentall are time-tested, safe, and effective at treating symptoms and restoring lifespan if any issues do arise. Obviously that doesn't mean it's not scary, surgery and potential complications of disease and surgery are scary! But it should comfort you to know that in many newer cohort studies, BAV populations have the same life expectancy and survival rate as the general population. Here's one for example: Outcomes in Adults With Bicuspid Aortic Valves
- The caveat to the above of course is that BAV can result in various conditions that lower survival significantly IF LEFT UNTREATED (severe stenosis or regurgitation, aneurysm etc.), BUT properly managing and treating those conditions generally results in excellent outcomes in terms of quality of life and survival, IF handled in a timely fashion.
- If possible, I definitely encourage looking around for different cardiologists if you don't feel comfortable or confident in the care provided by your current one.

So, great work following up on your condition and keep it up. We've got lots of life ahead to look forward to! If you have any questions please let me know/dm me! Wishing you the best <3

Edit: Here's another reassuring study: Clinical Outcomes of Adults With Bicuspid Aortic Valve: A European Perspective - PubMed
Edit: Clarifying that mild regurgitation with 30% RF is notable and a big deal, but in and of itself is not an indication for surgery if it's stable and asymptomatic. For some people regurgitation remains stable for a long time. However, if they're replacing your aorta, they will probably replace the valve as well if its having any regurgitation or stenosis.

 

[pellicle]

Hi

Either way, glad to be here and hopefully have some reassuring words from you guys.

well basically OHS has become one of the most successful surgeries in the surgical repertoire when you consider it from the perspective of outcomes. It seems complex (and it is) but there is a well oiled iteratively and recursively improved system of doing it which goes from pre-surgical imaging and planning, OR layout and skillset through to ICU.

I've done this 3 times over 38 years and each time was surprising in terms of how much better things went.

You'll be fine, and while you should keep your mind on the future, its important to actually note and enjoy the experience; few get the privilege. All too soon its in your rear view mirror (and from what I see nobody looks there anyway).



Best Wishes

 

[RealtorRick]

I was diagnosed with BAV with regurgitation at age 52.
I was in the “waiting room” of monitoring for 6 years. I chose a mechanical valve with proven history, St Jude’s. I am on Warfarin and am tested every 5 weeks with a quick finger prick at my local clinic. I have bridged off the warfarin for routine procedures like a colonoscopy and for serious issues like prostate cancer surgery. It has never been a major problem. Get yourself a new cardiologist who has better communication skills. It will likely change your whole perspective. Use this site to connect to even more people. I found this site while I was waiting and educated myself over the 6 years and was totally ready for the surgery. 6 days in the hospital and came home with restrictions on driving. Every day was better than the last and I never realized I had the regurgitation until I started walking post surgery and could not believe how much better I was. Good luck going forward and ask any questions you want. God Bless!

 

[tom in MO]

Hi all, happy to find somewhere to vent/get some information about likely the rest of my life lol

I’m a 34/F nurse from New Jersey and last year I was diagnosed with BAV. Here are some excerpts from my imaging:

“The heart is normal in size. The ascending aorta is top normal in caliber and measures 3.6 cm in diameter at the level of the pulmonary artery bifurcation with the descending aorta measuring 1.9 cm at the same level. There is no significant pericardial or pleural effusion. There is no significant mediastinal or hilar adenopathy. No suspicious parenchymal mass lesions are noted in the visualized lung parenchyma.
5. The left atrium is normal in size with a volume of 52.8 mL.
6. The right atrium is normal in size with a volume of 50.4 mL.
7. The aortic valve is bicuspid with fusion of the left and right coronary cusps.
8. Mild aortic regurgitation. Regurgitant volume is 28 mL. Regurgitant fraction is 28%.”

Basically this all hit me like a ton of bricks and out of nowhere as I was just at my yearly check up and my NP heard the slightest heart murmur and had me get a work up. Lo and behold. Of course I went down a Google rabbit hole and now I am waiting until the day I’ll need open heart surgery. I’m a bit of a hypochondriac so this had been tough on me mentally!

Tomorrow I get my repeat scans to see if anything’s changed. I’m not crazy about my current cardiologist as his bedside manner kind of sucks and he didn’t really explain things well enough for me the first time around. Just “if your aorta gets to 4cm we’ll be looking at surgery. Have a good day”. WHAT!?! I nearly puked!

I’m so worried my scans are going to be worse this time. Also, can’t tell if my new worsening symptoms are real, anxiety or just out of shape. SOB, lightheartedness, etc.

Either way, glad to be here and hopefully have some reassuring words from you guys.

Thanks for listening

The median age for surgery due to BAV is ~50. At 34 you could go a long time before you needed surgery. You might never need it. If you do need it, the surgery is highly successful >99% success. There is lots of good hospitals in New Jersey. Just make sure you keep your health insurance good and up to date.

 

[Zoltania]

@Deidra has summarized things really nicely. I just want to add that being in the waiting room and hoping you won't need surgery is extremely stressful in and of itself. I spent nine months there, doing lots of research, including finding this forum. I kept hoping to find evidence that I wouldn't need surgery.

Once the need became unmistakable, it was actually easier dealing with real-life challenges than with the ones that were all in my head.

 

[pellicle]

Once the need became unmistakable, it was actually easier dealing with real-life challenges than with the ones that were all in my head.

^^^^^^^^^^this^^^^^^^^^^^^^^^
I usually post something like this, but haven't for a while.

I think of this as what you said but said in a different way.

 

[slipkid]

You'll (spookygal) be fine.

Many of us here had BAVs our whole lives (with murmurs). I bet tons of people out there in the wild do and never need surgery. Sounds to me by the time you'd need the valve replaced - if that ever even comes up - the technology & procedures will be so advanced it'll be done on an outpatient basis!

I myself only had my aortic valve replaced because I had a big heart attack (clogged arteries) and they decided while they were going in there might as well replace my valve as well (it had some calcification), otherwise I'd still be carrying on as a BAVer. I have another leaky valve/murmur as well but do not even know which valve it is, none of the Drs I've seen were concerned about it or told me which one it is.

But get a cardiologist you are more comfortable with, if possible. Something I need to do btw (don't even have one now, long story)....

 

[Spookygal]

@Deidra has summarized things really nicely. I just want to add that being in the waiting room and hoping you won't need surgery is extremely stressful in and of itself. I spent nine months there, doing lots of research, including finding this forum. I kept hoping to find evidence that I wouldn't need surgery.

Once the need became unmistakable, it was actually easier dealing with real-life challenges than with the ones that were all in my head.

This is a great recap on how I’m feeling. I have yet to take to my thoracic surgeon but of course I’m thinking maybe I won’t! Which isn’t reality. It’s just alot to disgest. I’m scared.

 

[Spookygal]

You'll (spookygal) be fine.

Many of us here had BAVs our whole lives (with murmurs). I bet tons of people out there in the wild do and never need surgery. Sounds to me by the time you'd need the valve replaced - if that ever even comes up - the technology & procedures will be so advanced it'll be done on an outpatient basis!

I myself only had my aortic valve replaced because I had a big heart attack (clogged arteries) and they decided while they were going in there might as well replace my valve as well (it had some calcification), otherwise I'd still be carrying on as a BAVer. I have another leaky valve/murmur as well but do not even know which valve it is, none of the Drs I've seen were concerned about it or told me which one it is.

But get a cardiologist you are more comfortable with, if possible. Something I need to do btw (don't even have one now, long story)....

This is such a thoughtful reply. I appreciate you! I’m glad you’re well now and yes., that’s my first thing I need to do!

 

[Spookygal]

The median age for surgery due to BAV is ~50. At 34 you could go a long time before you needed surgery. You might never need it. If you do need it, the surgery is highly successful >99% success. There is lots of good hospitals in New Jersey. Just make sure you keep your health insurance good and up to date.

Thanks so much. I hope so. If not, I’m trying to prepare. Does anyone have thoughts on how hard it is to actually get an appointment with a top surgeon in my area? Is it impossible? Do I need to be a celebrity? Like what’s the deal? There’s great surgeons I’ve researched but I assume they’re unattainable and that’s got me really discouraged.

 

[Spookygal]

I was diagnosed with BAV with regurgitation at age 52.
I was in the “waiting room” of monitoring for 6 years. I chose a mechanical valve with proven history, St Jude’s. I am on Warfarin and am tested every 5 weeks with a quick finger prick at my local clinic. I have bridged off the warfarin for routine procedures like a colonoscopy and for serious issues like prostate cancer surgery. It has never been a major problem. Get yourself a new cardiologist who has better communication skills. It will likely change your whole perspective. Use this site to connect to even more people. I found this site while I was waiting and educated myself over the 6 years and was totally ready for the surgery. 6 days in the hospital and came home with restrictions on driving. Every day was better than the last and I never realized I had the regurgitation until I started walking post surgery and could not believe how much better I was. Good luck going forward and ask any questions you want. God Bless!

Thanks for this reply! I spent the weekend mourning my past life lol. I’m ready to respond and be active here and learn from you all! I have read about a lot of options and procedures. So much to think about. Have you hard of a valve sparing procure? That looked interesting, as I’m sure everyone would want that. I’m worried about being on warfarin forever but worry about needing another OHS also one day. I’m 34, can’t even believe I have to think of this.

 

[dick0236]

.......... I’m worried about being on warfarin forever but worry about needing another OHS also one day. I’m 34, can’t even believe I have to think of this.

It's not that bad. Warfarin becomes "just another daily routine", like brushing your teeth, and with a little luck, you will never need another OHS.

 

[nobog]

Hey Spookygal! Thanks for posting. Welcome to the forum (and the BAV club).

- It seems like everything is pretty normal for the moment other than mild regurgitation which is fairly common and not a huge deal, as far as I understand.

Well, it is a huge deal - that means that nearly 30% of the stroke volume is going "the wrong way". Something that needs to be addressed - nothing a mechanical valve won't fix - you are too young for a tissue valve.

 

[pellicle]

like brushing your teeth

what, daily?

that's onerous ;-)

 

[pellicle]

Hi

I spent the weekend mourning my past life lol.

well people usually do that on New Years or the day after a divorce. However I'm not sure why you regret so much what you did, but just carry the good memories forward.

If however this somehow means that you life as you knew it is dead, well that's just twaddle, and indeed has already happened in the past many times (at least I hope it has):

• your "past life" as a child stopped when you went to school
• then again when you went to Uni
• then again when you got a job
• ...when you had your first child
• perhaps again when you went from being single to being in a married relationship
• then again when your parents got ill and infirm
• ...

Life is about change, only death provides a constant state of unchanging experience. I'm not looking foward to that one.

I've had 3 OHS, and every single time my life just simply got better (as a result of the OHS).

I feel that Wokism provides a terrible burden of crap on younger people today, as an Xer I feel sorry for Millenials and Gen Z

Best Wishes

PS: if you're using a phone for this, then you're missing out on my signature, so here it is:
“We have two lives and the second begins when you realize you only have one.”
Confucius (apparently)

Warfarintology - when warfarin management is conducted like L Ron Hubbards pseudo science (called Scientology).

 

[nobog]

Now now Pel, where would those celebrities spend their $ if it wasn't for scientology (yes I used a small "s") ?

Sorry, off the subject of the post,

 

[pellicle]

Now now Pel, where would those celebrities spend their $ if it wasn't for scientology (yes I used a small "s") ?

same place as everyone else?
(Conspicuous consumption and signalling)
https://en.wikipedia.org/wiki/Sea_Org

 

[JWalters]

Also bifurcated AV with mild regurg also for me when I was 40. ... Sharing some 'random' thoughts that hopefully you will find useful or help in a different perspective:

It's great your GP heard the murmur --- I bet this was missed during many previous visits to the Dr !

Now you are under proper surveillance with good technology. In my opinion the results from the Echocardiogram are incredible.

I see you are a nurse. Talking to other thoracic&heart surgeons when I had my diagnosis really helped me absorb and understand what would happen in the process. Could you also use your network to find the best cardiologist and the best surgeon in your area?

Cheers!

 

[Deidra]

Well, it is a huge deal - that means that nearly 30% of the stroke volume is going "the wrong way". Something that needs to be addressed - nothing a mechanical valve won't fix - you are too young for a tissue valve.

Very good point! Thank you. Updated my original post to clarify.