Just got the news: BAV (Age 40)

[pellicle]

I know Pellicle just blasted me a bit about not being able to control my own destiny and the illusion of control, but I only half agree with that. I do believe I have no control over my genetic make-up, and that *stuff* happens,

I'm sorry you took it that way, my goal was to get you to see the glass half full and the destructive power of negative thought. It seems that one can suggest to people to be strong and to point out negative thoughts as being bad for you. Its even not PC to say you should try to help yourself.

All that seems to be left in that view of the world is to "offer prayers" and generally say "oh, I'm sorry to hear that"

stuff indeed happens (has happened to me) .. its how you choose to view it (and that is a choice you can make) that matters.

but I do think that we can still make choices that affect our health and longevity...

exactly

if my memory serves me right (now that I ponder this) was it with you that I had the communications issue with before? If it was please let me know, I'll make sure I don't reply to anything more you ask (meant in the context that my advice does not Gel with you so I'll not burden you with it)

 

[HenryCT]

I'm sorry you took it that way, my goal was to get you to see the glass half full and the destructive power of negative thought. It seems that one can suggest to people to be strong and to point out negative thoughts as being bad for you. Its even not PC to say you should try to help yourself.

All that seems to be left in that view of the world is to "offer prayers" and generally say "oh, I'm sorry to hear that"

stuff indeed happens (has happened to me) .. its how you choose to view it (and that is a choice you can make) that matters.

if my memory serves me right (now that I ponder this) was it with you that I had the communications issue with before? If it was please let me know, I'll make sure I don't reply to anything more you ask (meant in the context that my advice does not Gel with you so I'll not burden you with it)

I don't think it was me that you had a communication issue with, I only have a couple of posts as I am fairly new and still in the partly panicked mode since I only found out I have BAV a few months ago.

I do believe I got the drift of your initial reply, and in all honesty, a good chunk of it resonated with me, which is why I said "I only half agree". At least on the feeling sorry for yourself and freaking out about things that are entirely out of one's control, I agree.

 

[HenryCT]

HenryCT, I am also in CT. My surgeon was Dr. elefteriades from Yale. He is amazing. Yale has an aortic institute, so they are specialists with aneurysms and aortic valve issues. Perhaps send Dr. E an email and ask for a consult, or a recommendation for a cardio?
-dachsiemom; surgery at 41 - St. Jude valve conduit.

Thank you so much! If nothing else, this points me toward an option, and Yale is about 30 minutes from me.

 

[pellicle]

I don't think it was me that you had a communication issue with, I only have a couple of posts

that's good ...

I find much cultural diversity in between USA and Canada and Australia (and Finland) and as equally as the Americans Joke about the Canadians being too polite in speech I think if more of them knew us they'd Joke about Australians being "rough" ... but its changing ... the Milennials and Y Gens I work with are far more PC, as are Big City Folk. I'm more Country Australian in upbringing and probably a fair amount of Eastern Finland (Savo-Karelia) culture has rubbed off (as I fitted right in there). For instance Savo people would say "If the listener doesn't understand the speaker then that's the responsibility of the Listener" ... Finns take about 4 words to express that succinctly.

Note the gramma style of sticking on successive endings to make longer words that bring greater meaning. Each of those endings also has "he , she , them" endings as well as plural of those ...

I do believe I got the drift of your initial reply, and in all honesty, a good chunk of it resonated with me, which is why I said "I only half agree". At least on the feeling sorry for yourself and freaking out about things that are entirely out of one's control, I agree.

probably just my misunderstanding of your meaning when you said "blasted". I just try to steer people in what I believe to be the right route. I understand that feeling panic and shock are part of normal reactions, but I feel that the sooner it gets steered back the better the recovery.

Best Wishes

 

[DachsieMom]

HenryCT, feel free to ask if you have any questions about Dr E. My surgery was 8 months ago yesterday! He operated on both me and my sister (saved her life - she was 44). He has a very small office staff, but I have also heard that he returns emails that people send.

 

[HenryCT]

I have the most insane news to report.

Two years after my congenital BAV diagnosis, there has been a miracle, and it has healed itself entirely!

Well, of course that is impossible ... but what I did find out, in my first "echo" since the original one two years ago, was that there was a misdiagnosis, and supposedly there is NOTHING WRONG WITH MY VALVE.

Quite honestly, this came as a shock that left me unable to work all day at the office, and I had to leave early. I had spent 2 years terrified that I had BAV, and that it surgery was inevitable, and that other frightening things were very possible. Bill Paxton's passing post BAV surgery didn't help.

The nurse was the one who called me, several weeks after my echo, and said she had some "news" for me. I prepared to hear them say "we need to get more active in your situation", instead she said that they could not find a BAV, and that after multiple doctors reviewed both they concluded the original must have just been a "misreading".

Part of me is angry ... but how can one not be happy to hear this?

Quite honestly, after that kind of mess up, part of me is tempted to get another opinion, but when is enough enough?

For what it's worth, they sent me my "numbers", and here is what they are:
--------------------------------------

Left Ventricle Ejection: 55% (it says normal is > 52%, but this doesnt seem like its great, with 50-75 being normal)
IVS (Interventricular Septum): 1.0cm (with 0.6 - 1 cm being normal) (max of normal)
LVPW: 1.0cm (max of normal)
LVIDd Left ventricular internal dimension at end -diastole: 5.0 (normal)
LVIDs Left ventricular internal dimension at end -systole: 3.7 (normal)
Aortic Root: 3.5cm (with 3.1 to 3.7 being normal). Says I am upper limits of normal here
Left Atrium Diameter: 3.4 Normal
Left Atrium Volume Index: 24 ml/m2 (says normal, under 35)
E/A (Peak velocity of early diastolic transmitral flow : Peak velocity of late transmitral flow ratio): 1.6 (not sure?)
E/e' MEDIAL: ? E/e' LATERAL: 13
DT: Deceleration time of early diastolic transmitral flow: 164ms
RVSP: Right Ventrical systolic pressure: 16 mmHg (12-16 normal, higher is hypertension)

Findings:
- Lots of things "normal", wont list them here
- No regurgitation in aortic or mitral valve
- tricuspid valve, mild regurgitation, peak velocity 1.8 meters/second.
- pulmonic valve, "trace" regurgitation

Impressions:
- Normal left vent size and systolic function
- Normal valvular structures, very mild tricuspid regurgitation
- Aortic root is upper normal limit


Really, I am no expert at all, and tend to be glass half empty with my health, so if anyone else wants to take a stab, please do. Not sure if it matters, but I am not a small guy. 6', 240 lbs, and I look more like I am 215. I have ample muscle, but also am in the process of losing weight, working out 5 days a week or so, trying my best.

cardio type exercise has always been an issue for me, whether its running or performing without breaks during HIIT stuff. I tend to fade faster than many. For the last few years assumed it was a BAV which apparently does not exist!

 

[Nocturne]

That's pretty amazing. Congratulations. I can only imagine the immense relief you must be feeling right now.

Edit: Not to scare you or anything, but did they check your lipoprotein a? Lp(a)? Because it seems like you have some weirdness regarding your valve back there, and sky-high Lp(a) appears to be responsible for that in some cases -- it encourages the development of calcific AVS in otherwise normal aortic valves. Not to mention it does a lot of other nasty things to your body. Might consider getting that checked, as they are working on drugs to control it.

 

[cldlhd]

Good news and congrats but more importantly did you get an I told you so from the wife?

 

[Agian]

You're going to be walking around like a zombie for a while. Tears may follow.
That's really great news Henry. You have our permission to get wasted.

 

[pellicle]

I have the most insane news to report.

Two years after my congenital BAV diagnosis, there has been a miracle, and it has healed itself entirely!

excellent news, I recommend Agians above advice

don't bother buying any lottery tickets, cos you appear to have just got yours

Best Wishes

 

[dornole]

Oh man that's quite a story . . . well, glad you're cured! Mild and trace regurg are nothing to lose sleep over. For perspective, I'm going on year 16 of mod-severe regurg which affects me . . . not at all. And normal range, is normal . . . and yes if you are a big guy I believe you are likely to be on the "big" side of normal for your measurements.

I'd trust your docs that you're fine and get on with your life, just go back for any appts they want you to go to. They have little incentive to lie, they can't bill for telling you to go home and enjoy your reprieve . . . . Maybe turn your focus to some new ideas for that anxiety, eh? It super sucks, as you know, and it's worth a whole bunch of effort to improve it.

Glad you just had Medical Error : )

 

[Lisa2]

Congrats, Henry. I would be in shock, too! I can imagine a big weight lifting from your shoulders.

 

[ZechariahLi]

After reading the longest post I felt obligated to at least to say something... Just wanna be part of this happiness. Congrats Henry!

 

[newarrior]

I think if you were going to have open heart surgery you might be telling your friends about it. Once I knew that surgery was likely a couple of years away I certainly told our friends. Not strangers though.

I've been doing some more research into the prevelance of BAV as I'm really intrigued now that I've said I don't believe it's 2% of the population. There's quite a few differeing reports. Here's one: Healthgrades Health Library "Ophanet, who are a consortium of European partners, currently defines a condition rare when if affects 1 person per 2,000. They list Bicuspid aortic valve as a "rare disease"" - 1 in 2,000 is 0.05 % ! Later it says here: Orphanet: NON RARE IN EUROPE: Bicuspid aortic valve >1/1000 which is more than 0.1%. And here: http://circ.ahajournals.org/content/111/7/832.full it says 0.9 to 1.36%

Btw autsim isn't always obvious, except when the person is profoundly autistic. So many parents of autistic children complain of strangers who looked ascance at their autistic child, thinking they were misbehaving when they were simpy being autistic.

I just got diagnosed with autism at age 59 last year