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valdab

Well-known member
Joined
Sep 12, 2010
Messages
86
Location
UK
Hello,

I've been lurking here awhile, reluctant to post because putting it down in black and white somehow makes things more real.

I'm 52, female, live in the UK and was diagnosed with BAV a couple of years back following a routine checkup. Well, I say routine, it wasn't quite. I had a full cardiac MOT when I hit 50 and was pronounced to have a 'golden' heart. About 10 months later I was hospitalised briefly for suspected pericarditis and when I went with my husband to visit the same cardiologist (my husband had surgery for atrial fibrillation a few years back), I mentioned my stay in hospital and he decided to run some more tests.
(FWIW I suspect that the pericarditis may, in fact, have been shingles, although I can't be sure. They certainly couldn't hear or find any evidence of pericarditis at the hospital).
This time, they found I had BAV with dilated aorta 4.5cm - with an echo and MRI. I have had it checked again recently and the measurements remain the same.

I am pretty active, walking about 8 miles a day with no significant health issues other than an under-active thyroid gland and all the fun and games that come with the menopause.

I recently started to have some symptoms of tiredness , trouble getting a good breath and a feeling of fullness in my throat. A blood test showed that my thyroid was causing problems (specifically a T3/T4 conversion issue). I decided to visit an Endocrinologist who suggest that the thyroid issue was related to the menopause and suggested I try Bio-identical HRT. That seems to have done the trick, and right now I feel OK. I think the alternative may have been a T3 supplement which can have cardiac and blood pressure issues I believe, so I feel that the bio-HRT is possibly the lesser of the two evils.

My cardiologist is emphatic that not everyone with BAV needs surgery, but I suspect he is just trying to allay my fears. He is a general cardiologist and he intends to continue monitoring me until such time that things change when I would be referred on. Although he missed the BAV first time round, I like him and feel comfortable with him.

Part of me thinks I should get on with my life and not get bogged down reading about things that may or may not happen, yet I know that it is preferable to be well-informed. Unfortunately, stress and acute anxiety get hold of me sometimes and I have be known to work myself up into a terrible state over health issues in the past.

Thank you very much to all the wonderful people who contribute to this forum. I spent years (and many hours) researching my husband's AF on a similarly inspiring forum. He's now 'cured' to all intents and purposes - I didn't think I'd be going through the same thing for myself a couple of years later!
 
Hi valdab,

I'm in exactly the same boat. I'm 28 years old with BAV and Ao of 45mm, I get really worried and anxious about all this but, cardiologists keep reassuring me that there is nothing to worry about, and I'm sure they are right, after all, they are specialists in this field and know exactly what they are talking about.

Where about in UK you are? I'm from Bristol.

Don't worry too much about this ( I should practice what I'm preaching!!) you're in good hands, and this issue we've got 2% of the whole population got it and everyone lives a normal life, if and when the valve or aorta starts deteriorating, then they just fix it with surgery, which is extremely safe!
 
Hi and Welcome to the family,

I know it's a hard pill to swallow. THe good news is, they know about it and you are being monitored very carefully. I too have BAV (41 year old female). I had my first echo in 2007 and nothing was found.. then had another one in 2010 and she didn't tell me anything (I have a hard time with this part) and I am not sure why. THen she dumped it on me in Feb of this year that I would need OHS due to a bicuspid valve.

I don't think I have any symptoms (yet) but it does seem I tire faster.. for instance, when I am doing housework all day etc... I just have to sit down and gather my energy again. I don't know if it's being 41 or the fact that my aortic stenosis is getting worse. I degraded very fast in the past year so, if I keep this up... Ill need surgery by the end of the year or early next year.

I am like you and have worried about health issues in the past. I have general anxiety even on a good day so this has put me through the roof. Somehow, knowing I have no choice (the alternative is death) makes the surgery easier to think about. So many on here have had it and recovered quite well.

Maybe you can ask your doc for some anxiety meds.. I did and it has helped a lot. After all, you still have to function.

We are here to support you.
 
Hi, I know this is tough news to hear that you have any heart problems, but wanted to let you know what your Cardiologist said it true, not all people with BAV need surgery. Actually about 2% of the people are born with BAV and the majority never need surgery and many never even know there valve is bicuspid, it is just something seen during their autopsy after they die (from something not related to their hearts at all)

It's a good idea to learn about your heart and options so if you ever do need surgery, you don't have to quickly learn as much, and keep getting your check ups. I'm glad to hear your husband is doing well.
 
Since 1-2% of the human population is born with a BAV, it seems clear to me that many people must survive to a ripe old age without needing an AVR. But someof them could presumably have gone even "riper" with a replacement.

MOT = Ministry of Transport? So a "cardiac MOT" is an all-over heart checkup, comparable to what automobiles get periodically in the UK? New to me, having only visited the UK once. Auto inspections here in Ontario are supervised by the MOT, but they're (foolishly) only required when a car is sold(!). And yet there doesn't seem to be carnage on the streets from bad equipment, though I think I see more car lights "out" than in other places I've lived. . .
 
Wow - thanks for the speedy replies. This is clearly a very warm and friendly place!

themalteser : I'm in (sunny) East Sussex. Thanks for the advice - worry and anxiety are so destructive. I guess I'm lucky I got to 50 before the bombshell hit!

deuxofus: I feel slightly comforted by the fact that you BAV was not discovered on first investigation. Funnily enough I was suffering from stress and anxiety when I was 21 and got it into my head that I had heart problems. I had a full check up and they diagnosed a possible floppy mitral valve. I was in Florida at the time. Subsequent scans revealed nothing and it was eventually discounted. I suppose I must have had half a dozen scans over the years before it was picked up. I keep wondering if I'm getting more tired than I used to - to be honest, it's very hard with the menopause as well to know exactly what is going on. I'm still pretty ignorant, but you appear to have stenosis (and symptoms) yet only 1cm. Does that mean 1cm bigger than it should be?

Lyniw - thanks for echoing what my cardiologist told me. After spending time on the internet it seems that everyone is having surgery for this thing, but of course I forget that many are unaware and presumably many of the asymptomatic sufferers don't necessarily share their story online.

normofthenorth MOT is indeed a motoring term; not used in connection with health matters here, just my offbeat turn of phrase!
 
Dear Valdab, how's it going? I am pleased to find a fellow BAV-er in the UK. I do know someone else with one, but stenosis is not yet severe with her. I am getting conflicting messages about surgery and would like to talk about it with someone who's also going through this.

I have a BAV with no symptoms, discovered during a serious kidney illness in 2003 and monitored since then. Gradient (of pressure inside and outside the valve) has been getting worse rather fast, is now 65 (not sure what the units are), and the heart doctor I saw a few months ago said she expected me to have an angiogram this autumn and then make a date for the operation. I've read an article on the internet (by Dr Chan) saying that operating before you have symptoms is not advisable. I don't know who to believe.

I know there are tests which help doctors make a decision about surgery - in particular, the exercise test, and the brain nitropeptide test (may have got that wrong) known as BNP. I will be pressing for these to see if surgery is all that urgent.

I am not as active as you but have bursts of gardening, including digging holes etc., which don't leave me short of breath.

I'm confused and it's also rather lonely. If I talk about it with people I feel they think I am making a fuss about nothing.
 
Valdab and bivalve1, a heart felt WELCOME to our OHS family glad you found the site, there is a wealth of knowledge here for the now and in the future .....
No matter if your are on the National Health there or on our medical plans in Canada or insured in the U.S., you are your BEST advocate and knowledge you best tool

Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf
 
I'm wondering how often your Cardiologist recommends having a follow-up echocardiogram and MRI.

At 4.5 cm, I would hope he plan to closely watch your aorta for signs of continuing enlargement.

Did you get a copy of your test reports? If not, I highly recommend doing so.

It would be helpful to know your Effective Aortic Valve Area.

I recently posted a list that give Aortic Valve Stenosis Classifications based on blood flow velocity, pressure gradient, and effective valve area in the Heart Talk Forum.

'AL Capshaw'
 
Thanks bivalve; I have replied to your email.

You're absolutely right - it is a lonely place to be. People do tend to think you're making a fuss over nothing. I read up an awful lot when I was first diagnosed but came to the realisation that I don't want to spend my free time immersed in medical documents getting myself stressed out, so I've stepped back a bit now. My feeling is that surgery before it's necessary is generally not advisable but maybe thinking has changed?

I'm sorry to hear your pressure gradient is worsening; it sounds like you have a competent specialist. I hope things stabilise for you.
Please do keep in touch.
regards
 
I'm wondering how often your Cardiologist recommends having a follow-up echocardiogram and MRI.

At 4.5 cm, I would hope he plan to closely watch your aorta for signs of continuing enlargement.


He has told me that yearly testing is necessary. I have a letter from my Cardiologist, but not a report as such. the letter says there is no stenosis, ejection fraction 65% and no regurgitation. He doesn't clarify further nor explain how he reached these conclusions.
I wonder if I should be asking for a more detailed report?
 
Your Ejection Fraction is in the Normal Range.
With NO Stenosis and NO Regurgitation, there is NO reason your BAV would need replacement at this time.

Your Aortic Aneurysm DOES need to be monitored. The 'usual' trigger for 'intervention' is 5.0 cm.

FWIW, I get copies of ALL of my EchoCardiogram Reports and chart ALL of the parameters on a Spread Sheet for easy comparison. This way I can see ANY change before the numbers fall outside the "normal range" guidelines. I look on it as an Early Warning System.

'AL Capshaw'
 
Thanks for the reassurance. Hopefully the annual checkup will keep on top of things. I have made a note to request my ECG reports next time.
Can I ask if you can recommend anywhere to learn about interpreting ECG reports? The only instructions I have encountered have been fairly complicated and intensive. Or maybe that's just the way it is?
regards
 
EKG/ECG reports do seem to be complicated. I found 1 or 2 solid-looking sites online that looked useful. I kept one open in a browser tab for a LONG time, always finding other things to do instead of becoming an expert (and I'm a techno-geek!!). No, wait! It's still open, at http://www.amperordirect.com/pc/help-ecg-monitor/z-interpreting-ecg-2.html . But I still haven't dived into it, 6-ish months post-op!

The trend is toward operating earlier. In addition to preventing rare emergencies, there's often a benefit in avoiding gradual heart changes, some of which reverse themselves "naturally" post-op, and some of which leave traces you'd be better off without. I'm more familiar with the AV stenosis "family" of heart changes rather than any that might(?) compensate for an enlarged Aorta.

The main reason to delay, IMHO, is psychological: I think the post-op rehab (HOWEVER it goes) is much easier to deal with if you were suffering or impaired -- at least a LITTLE "symptomatic" -- pre-op. My rehab is going great, and I'm urban bicycling like a real lunatic again, and I'm prescribed 3 miles of "walk-jog" (7:1 ratio for now) 5x/week, unless I substitute cycling for it. BUT I was just barely symptomatic pre-op. So some times, when somebody asks how I'm doing, I compare my present CV fitness level to my CV fitness level on my way into surgery. And frankly, I'm not sure I'm actually fitter yet!!

Of course, I'm way better off in many different ways, and my prognosis is way better -- but in pure CV terms like how many flights of stairs I can run up without stopping to catch my breath, I'm not sure I'm back where I started. That's not getting me down or bugging me, but in a more extreme case, I think it would be ironically helpful to have some clear CV symptoms in the "before" snapshot, which comes from waiting longer before the surgery. YMMV, of course.
 
Many thanks for the link - I'll keep in on file for when my brain is in gear.

Thanks also for sharing your thoughts - glad to hear you've come through and now have it all behind you. What you say makes a lot of sense. Regular checkups and constant re-evalution of one's situation seems to be key advice here. Thanks.
 
Valdab,

My experience is probably not the norm, but your numbers on the aneurysm prompted me to tell you my situation. I was born with BAV, and monitored every year to two years with an echocardiogram to follow my valve. I had known that surgery was a possibility in my lifetime, but we had always been discussing my valve, and that was it. In 2001 that changed, as I was told that my ascending aorta had dilated to 4.5cm, from 3.4cm if I remember correctly, in a two year span. I was put on more frequent echo's and we watched and waited... for ten years. My aorta dilated quite a bit in two years, then stabilized for the next ten. This year, I went in for my annual echo and it had again expanded to 5.4cm, and a month later I had surgery.

Again, I don't believe that my situation is typical, but it did happen for me that my dilating aorta stabilized for a number of years, thus putting the surgery off for quite some time. I was grateful for that, and hope that the same can be true for yours as well. Your numbers definitely warrant more frequent checks and closer scrutiny, and hopefully it can stabilize for you and surgery can be delayed with proper oversight.
 
Many thanks for sharing your story. It is very reassuring to read of someone with similar numbers to mine. As I was only diagnosed 18 months ago, I have no way of knowing how long I have been at 4.5cm; fingers crossed it remains like this for a while. Glad to hear your surgery is now behind you. You sound like you're doing well.
 
Hi ValDab,

I have a similar situation in that I was born with a BAV that was found in 2002. I've been monitored yearly since. About 4 years ago during my yearly check up they found an aneurysm of about 4 cm. So they started doing yearly CT scans. It grew fast in the last 4 years. So this year they said I it is now 5.3 cmx5 cm and time to fix it. The surgeon had me pick out a valve in case he had to replace mine. They saw during surgery that my BAV was working pristine and I could live a normal life with it. As do many people. Unfortunately, aneurysms are usually found post mortem so that had to be fixed on 5 Apr 2011.

Carol
 
Hi Carol,

Thank you for sharing your details. I hope your op. went well and you are now well on your way to recovery.
i suppose it stands to reason that one doesn't get to read about the many people for whom their valve works perfectly all through their life. My cardiologist keeps trying to impress upon me that there remains a very good chance that I won't need intervention, but obviously, reading these forums tends to skew one's optimism. My gut feeling is that mine will need to be attended to at some point. I hadn't realised that people have the aneurysm attended to without necessarily having a new valve.
My BAV has always shown up in good shape at my checkups, so it's nice to read encouraging words about it's long-term prospects.

Valda
 

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