Recent BAV diagnosis

[Mstroik]

Hi my name is matt. About 2 months ago my primary care provider descovered a slight murmur. After an echo they found a "major" amount as regurgitation. So they ordered a transesophageal echocardiogram. I have 4.5cm of area where my valve doesn't close and some enlargement of my heart chamber.

In short order I'm freaking out! I have another echo in a couple of days to determine if theres any changes in my heart. My doctor told me that I will probably have surgery within the next 3 years. I'm not even 30!

What did you guys do to cope with your bad news

What can I do to stop my wife from awfulizing

Thanks guys for letting me vent a bit

 

[pellicle]

Hi my name is matt. .. So they ordered a transesophageal echocardiogram. I have 4.5cm of area where my valve doesn't close and some enlargement of my heart chamber.

Seems inappropriate but I guess welcome is about as good as I can suggest

In short order I'm freaking out!

Understandable but completely unneeded. I've just recently had an aortic valve replaced and a serious aneurysm repaired on my aorta.

I suffered worse in bicycle accidents where people opened car doors.

They say there is nothing to fear except fear itself.

Its true.

I have another echo in a couple of days to determine if theres any changes in my heart. My doctor told me that I will probably have surgery within the next 3 years. I'm not even 30!

So this means you will repair even better and faster than the elderly and those who have crap lifestyles and have OHS due to congestive heart failure. Aka bypass candidates.

All positive stuff so far here.

I had a homograph tissue valve at 28 from a bicuspi aortic valve. Within a year I was cycling 20 or so km most nights after work in 45 minutes.

What did you guys do to cope with your bad news

Well I was lucky, I had access to Open Heart Surgery that saved my life and allowed me to live really well. I guess you are in the same boat

What can I do to stop my wife from awfulizing

That's a tough one. Some people just always panic. My advice is get here on her and let her talk to the success stories and allay her fears

Thanks guys for letting me vent a bit

No worries. Something to watch

http://www.youtube.com/watch?v=jHPOzQzk9Qo

Remember, its all about attitude
PS my wife was also very anxious about it. We talked a lot and she kept her self busy planning things, and drawing

 

[Heart Of The Sunrise]

Matt: Check my other posts for my details. You are not alone. Tons of first hand experience and knowledge here @VRG.org. I found out in October. I was freaked out too!......Then I got smart. I learned as much as I could about the heart and the surgeon that my cardio was going to send me to. I was 56.5 years old when I found out. You are very fortunate to have found out,hopefully before any lasting damage is done. What is the status of your ascending aorta? A result of a BAV is often an enlargement of the ascending aorta. My surgeon said normal should be between 3.0 and 3.5 CM. Mine is 4.9 cm. My surgery to repair the aorta and replace the valve are @ HUP in Philly on March 18th. This site is a great place to calm your fears and learn what you must. You will have some important decisions to make with valve choice. Neither choice is perfect...tissue...or mechanical. Whichever way you go is a good choice because it will ultimately save and increase the quality of you life. Be strong!:thumbup: It is a very common heart health issue...it is very safely repaired.....we all here are fortunate in that respect!

 

[Oilman]

Welcome Matt, I think lots of us had that same reaction when hearing we will require surgery to repair our heart. You will be looked after very well, just like everyone else on here. There is life after AVR, and you will experience that too. I suggest lots of reading of old posts from people with hands on experience, this site and the people who shared their experiences, is what helped me through my AVR 3 months ago. Best wishes to you and your wife on this journey.

 

[Mom2izzy]

Recent BAV diagnosis

Here's the way I look at it...IF anything bad happens (which is extremely, highly unlikely), would you want your memories of this time to be happy or filled with regret for spending all of your time and energy worrying?

NOTE: Worrying cannot change the outcome, so there's really no point.

Trust your surgeon...they do this EVERY day.

Is it easy for the patient? Nope, but for most I don't think it is as difficult as they expect. I know people with much less "scary" surgeries who have WAY more pain after. I've also run into people with worse chances for a good outcome (advanced stage cancer or brain surgeries). Keep things in perspective.

If none of that works, there are some fabulous anti-anxiety drugs on the market! My GP prescribed some for me prior to my surgery.

 

[epstns]

Hi, Matt, and welcome to The Waiting Room - the virtual room where many of us await their own turns at valve surgery. I was diagnosed at age 52 and then waited over 9 years before it became time for surgery. During that time I managed to just live my life. At first I was in shock, had some sleepless nights and a lot of general anxiety over the unknowns. Then it dawned on me -- once diagnosed, there wasn't a thing I could do to change the situation, so I'd just better get on with my life the way I wanted to live it. I did everything I would otherwise do. We raised our family, traveled, did home improvements, went on with careers, I even kept up my running (at the time, about 20-25 miles a week). It wasn't until I was over 60 that my valve began to deteriorate more and I had to slow down a bit. Finally, at age 63 I called it a game and scheduled surgery. Now, at 65, I'm back at it - doing everything I want to do and probably more than the average geezer my age can do. The big thing to realize right now is that, other than a couple of uncommon conditions, valve patients don't just drop dead. Our valves keep working and deteriorate over time, and as long as we keep up with our cardio exams, we have lots of warning that surgery is coming up. (The uncommon condition that most comes to mind is that of having critical aortic stenosis and having the valve just close down, causing sudden cardiac death. This is the opposite of your aortic insufficiency, so not likely for you.) Once you can get past the shock of knowing that you will eventually have heart surgery, you can push it into the mental background and just get on with life until the time comes. When you get to "the time" we can help you through that, too. If I can get through it, anyone can. I hate hospitals and the whole idea of surgery, and I hit all the speed bumps in surgery and recovery, but I'm still here banging away at life.

It is a big shock to find that you will need this complicated surgery. Learn all you can about your condition and the surgery you will need. Once you do that, you will realize that the survival rates for this sort of surgery are about the same as those for appendectomies. Maybe not exactly the same, but to us laymen, not that different. The survival rate for most valve surgeries is in the 98-99% range - and those stats include the elderly and the very sick patients as well as young, healthy people like you.

Look at it this way -- you're far better off knowing that you have a heart condition, you have to monitor it, and they can fix it, versus not knowing, waiting too long and damaging your heart (or worse). Hang in there. We will wait with you. . .

 

[Mstroik]

Thanks guys. It's nice to have a forum about this. I'm glad I found it. I otherwise have know one to talk too. Thanks again. I wil keep you guys posted

 

[tom in MO]

Welcome to the waiting room. Rest easy, most people make it through with little or no problems. Take the time to enjoy the good things in your life. Make sure your keep your insurance up-to-date. Don't skip appointments with your cardiologist, echocaridologist, aniverseries or chances to see friends. Learn the symptoms of endocarditis. Take premdications before getting your teeth cleaned (not needed for fillings, crowns, or other procedures w/o likelihood of blood.)

Your situation will help you ignore the little daily annoyances...how bad can they be compared to your upcoming OPEN HEART SURGERY

 

[ramjet]

Hi Mstroik,
Just some perspective which might help.
A BAV is one of the most common congenital heart defects, (arguably the most common congenital heart condition affecting almost 2% of the population, and often inherited from one of your partents) with many people never knowing about their BAV condition as they live their life without any symptoms.

Also, there are quite a range of severities of the condition with either regurigation (back flow), or stenosis (flow obstruction), or a combination of stenosis and regurgitation, and quite a range of symptoms from nothing through to being totally bedridden. The good news is they have diagnosied your BAV, presumably because they heard the murmur, but sometimes it is discovered because people are becoming breathless or are getting chest pains etc. I coped with the news by finding out as much as I could, as I had virtually 30 years to learn about it, as my BAV was only found during a very thorough life insuarance medical, and even then many otehr doctors could not hear the "trivial" murmur, and it could only be heard if the stethescope was placed in exactly the right place on my chest while I was leaning forward (so my heart came into closer contact with my chest wall), but it eventually, over many years , became symtomatic, with breathlessness under exertion.

So I have had many years to stay fit, live my life unaffected whatsoever, and had time to ask the experts ....we planned the surgery well in advance, and by having regular cardiac echos (not tranesophageal but just echos through the chestwall) we were able to replace the valve before the aortic root had started to become enlarged. My left ventricle had started to enlarge due to reguritation, which is a normal adaptaton, but it returned very quickly to its normal size (before I was even dischaged from hospital). I knew othersa round mewould be "panicers" etc, so apart from my wife, I didn't tell anyone else, just to avoid the questions and the awfulizing type stuff...and we told my kids a few days before the surgery, and didn't make a big thing of it...and for me, it turned out that the surgery wasn't a big thing fortunately...honestly, the surgery all went very well.... as the vast majority of these surgeries do...espeically if you are young and fit and healthy. I did get some memory problems for a while,which, I am told, is not uncommon for some people after any big surgery, but thats all good now.

So focus on staying fit, eating right, not smoking, stay active, and trust the experts....remember, many people have no idea what might be wrong with their body, and some people, unfortunatley, can't do anything about their medical conditions or diseases, but we have a very good treatment option, we can get a new, better valve, from a surgery that has a very, very, very high success rate...take care, stay in touch, ask questions and focus on doing things with your loved ones, go out, go camping, go on a holdiay, have some fun!!

...by the way, where abouts are you located in the world?

 

[Mstroik]

Thanks for the advice. I live in stevens point wi.

 

[Scott]

Hi Matt. I was 44 when I had my valve replaced. I found out a few years eirlier. I totally freaked out!! Its been 17 months with my on-x valve. It was not a fun surgery but not as bad as I thought. Really my life is back to the way it was. I try to be careful now. I just went to Hawaii and hiked across 3 miles of sharp jagged lava to poke a stick in the lava! I wore some gloves and long pants and carried some bandages. Just in case. No problems. I say all this just to let you know that it's going to be all right! You now have a condition that you will need some extra care for the rest of your life. Take care of yourself and odds are that you will have a normal life!