anxiety over diagnosis

[mauck1]

I was just diagnosed with BAV a few weeks ago. This has sent me into major panic attack mode. I am not sleeping much and scared. Both my primary care and my cardiologist say that it is very mild and that is could be decades if ever that I would need any surgical intervention. I am having a hard time accepting this and as I said having panic attacks like crazy due to things I have read on the internet regarding BAV, stenosis and the like. I have a visit with the cardiologist in a few days and have had a talk with her over the phone in which she again said that it is mild and would take years to cause an issue. I am 36 and my first child is due in a few weeks. I need to get my head around this and get back in the game for my wife and baby. I have a few questions

Why would it take until I am 36 to find the BAV?

Could they be wrong about the BAV diagnosis?

Any suggestions for getting my head around the possiblity of surgery if it comes to that?

Any thoughts you guys have would be welcome.

 

[ARGreenMN]

I just copied and pasted the below from another post I just made because you're in a similar boat to someone else that just posted (Paleogirl). Which by the way, is the great thing about this forum - there's almost always someone that can relate to your situation/question in here.

My BAV was diagnosed early in life (unlike yours being later - not sure why that happens - but have heard of several that have known it since early on, and others that didn't know about it 'till alter like you). But the good news is I made it halfway through my life (yep, I'm planning to live 'till I'm 98) before needing the surgery 6 wks ago. I other words, I went 37 years after being diagnosed before needing the surgery. On the other hand, there are others in here who got diagnosed later in life and needed the surgery pretty soon after being diagnosed (but think theirs was typically diagnosed as moderate to severe, rather than mild). The point is, it's too unpredictable to say when/if you'll need surgery. Just know this - the surgery is nowhere near as bad as you're likely thinking. Read some of the posts from those that have recently gone through it and you'll see what I mean. And we're not BS'ing - it really isn't anywhere near as bad as most fear.

 

[Luckyguy17]

Mauk1,

yep we have all been there, woe be me, i have some heart disease that will likely "someday" need OHS.

In bed next to me at hospital, was a 37 year old male with BAV and had he OHS for AVR, on same day, I am 56, and we had similar surgery.

Some BAV do a lifetime with no need for surgery, a recent post from member today, is that it has been 32 years since murmur detected and still no surgery.

So some BAV need surgery at a young age and some live a lifetime with the condition..life's a crapshoot, but be reassured that if you ever need OHS, statistics are very much in your favour, most do well with recovery and lead a very normal life pre op and post op, a few (mostly very few) have complications and some compromise to living...that is unfortunate but reality and good on them for living the life with the compromise, it cannot be easy.

So do not fuss over the maybe's, do the follow ups and maybe for you, OHS may be never, if OHS is required, you readjust...life goes on with a prosthetic and for most of us it is a bump in the road, for weeks/months and some members are doing marathons and much more,a diag it is after all a very fixable condition, unlike other diseases that just go on and on, am a believer that BAV and OHS is serious, but is a diagnosis that is quite permanently fixable in this day and age and time is in your favout with new medical advancements.

If you look at statistics, heart was the biggest medical conditions for fatality, until recently, it has now been replaced by that other dreaded and dreadful disease.

Be aware, keep an eye for symptoms and discuss with Cardiologist on your periodic visits...all the best with upcoming birth, life and living goes on, we must adjust and OHS is usually minor adjustment and temporary.

 

[Paleowoman]

I can understand your anxiety. I've just joined this forum today. My BAV was first heard when I was 25 but I'm 57 now and I've still not had my valve replaced. I now get yearly echocardiograms because the time for the replacement is getting nearer, though it still might be another 5 years - or longer if I can help it ! The thought of heart surgery does make me feel anxious, who wouldn't feel anxious about it ? I do feel that cardiologists underestimate the impact of this diagnosis on our anxiety levels. For now I'm just doing whatever I can to keep fit and strong as that will help my heart the most. And I'm glad this forum exists.

 

[skeptic49]

I was just diagnosed with BAV a few weeks ago... I have a few questions

Why would it take until I am 36 to find the BAV?

Could they be wrong about the BAV diagnosis?

Any suggestions for getting my head around the possiblity of surgery if it comes to that?

Any thoughts you guys have would be welcome.

Welcome to the forum. In answer to your questions, I didn't find out about my BAV until I was 59. In fact, my cardiologist at the time missed it when he performed echos. It was only when I went for a screening to a University hospital that it was diagnosed. They have the best equipment and the most experienced echo techs. They might be wrong about your BAV DX but propbably not. As others have said, you may not need surgery for years or decades if ever. On the other hand, BAV disease, which affects about 2 percent of the population, is something that you need to watch because is it thought to be a connective tissue disorder often accompanied by aortic dilation/aneurysms, etc. It is believed to be a heritable condition, and the recommendation is that the first degree relatives of those with BAV be screened for the condition as well. As for the potential for surgery, don't worry about it until the time comes. If you need it it will save your life! In the meantime welcome to the club. Pull up a chair and relax. There are a lot of us BAV types around here in various stages of the disease both pre and post surgery.

Best wishes,

Jim

 

[Superbob]

Certainly understand you being upset. We've been there.

My heart murmur was first noticed by an internist when I was in my 20s. He mentioned aortic regurgitation and said I eventually would have to have valve replacement. No other doctor who listened to my heart back then ever heard the murmur, and many listened. So part of diagnosis is having observant doctors.

He was right in another way -- I did have to have the valve (and root) replacement --- but not for 40 years, when I was 63. (At Inova Fairfax, up in your area, with a great surgeon there.) Meanwhile, I had pretty regular monitoring -- esp after I hit 60.

If you are in the "mild" category, that means you might not face surgery, if ever, for many years. No guarantees of course, so you should have a good cardio to keep monitoring you.

Look, this is not a death sentence. Nor is it a sentence to a diminished life. During the pre-surgery years, I played industrial league softball and even ran some marathons. Post-surgery, I am an avid walker/hiker and live life fully. Just today I became a member of the Mended Hearts organization at our local hospital. One of my cherished moments after my surgery was when a member of Mended Hearts came to visit me and gave me a heart pillow. I now want to be one of those people bringing cheer and help to heart patients.

Think what a blessing it is to have medical science that can get on top of these problems and diagnose them and do something about them. I am truly blessed. I have seen grandchildren be born and grow, grandchildren I never would have seen had it not been for this wonderful field of medicine.

I know it is hard right now, but try to look ahead and consider all the positives. My very best wishes to you!

 

[Bill B]

My BAV was not diagnosed until I was 60. Only one other doctor ever commented that I had a murmur and he made no special mention of a problem with it. I ran track in high school and marathons as an adult not knowing what was lurking until 2 years ago when a GP said I should have an echo done and the problem came to light. By then my valve was going downhill, although I never had any noticeable symptoms and was an active guy able to do anything I wanted. BAV never affected my life at all until it was clear I needed to have the AVR. I never suffered before or after the operation. Yes, when I first got the diagnosis it completely threw me for a loop, but as I learned more, I settled down and figured out what would work best for me. My valve, once I got past 60, deteriorated rapidly, but there is no typical course.

I think the estimate is that about 1/2 of the people with BAV never need an AVR and live to a ripe old age.

Get on with your life. Do whatever you want to do. Have regular check-ups and occasional echos as advised by your doctors. If and when you may need an AVR is totally unpredictable.

 

[Lily]

Congratulations on the coming baby!

I can imagine how much of a shock this might be to someone your age who never had any idea there could be this problem within them.

I always knew about my heart problem so it wasn't as big a shock. But I do remember how depressed I was in my early 30's when I had to start taking a daily hypertensive medication. I recall finding it very discouraging, the thought that I HAD to take some stupid pill every day for the rest of my life. So I think I have an idea of your anxiety.

But, there are degrees within the bicuspid diagnosis. So, just because someone else had to have surgery for a bicuspid at birth, or at another young age, there are some who never ever need surgery for it. Others may have a more severe form (or valve malformation) within the disorder diagnosis.

And an "advantage" to it, if you will, is that people with bicuspid disorders usually have very clear arteries.

Hopefully, you'll get over the shock soon. I felt kind of defective after the surgery. But it helped me to remember that sometimes surgical intervention is necessary for survival, such as women who need C-sections to have babies and people who need to have their appendix removed.

So if you ever need heart surgery, logic dictates that it's just another example of the need for surgical intervention for survival.

I hope this has been helpful in some way. Take care

 

[Mentu]

M, Bob said that his problem was found by an observant Doctor; so was mine. Ten years ago at the very first meeting with my then new Doctor, she turned to me and asked "has anyone ever said you have a heart murmur?" In a word, No, no one had. What I know today is that my family Doctor is one of the best. She immediately sent me to a cardiologist who diagnosed moderate aortic stenosis. The medical community is no different from any other. There are bright lights and there are dim bulbs. The Cardiologist she sent me to has also been with me for that 10 years and was the one who sent me to see a surgeon. Don't spend time worrying about it not having been found earlier because nothing would have been done differently.

As for whether they could get the diagnosis wrong, there is some maneuvering room there. Yes, it is possible. Before my AVR, my Cardio was certain I was born with a normal valve but my Surgeon believed it was bi-cuspid. The Surgeon later said that it was hard to tell because of the calcification but that it was more likely a tri-cuspid valve. Now, as for whether the diagnosis of stenosis could be wrong, based on my somewhat limited experience, I would say they might quibble about mild or mild-moderate but not the fact of the degeneration itself. The important thing is that you and your Doctors know about it now and can monitor your valve. It certainly is possible for valves to degenerate more rapidly over a period of months but it isn't very likely to change from mild to severe in a short time. I spent about 8 years in the mild-moderate to moderate to moderate-severe progression.

The other good thing is that you have found here in VR a bunch of people who know exactly what it is like to suddenly learn that there is a problem you never expected. There are even more of us who have been through the difficult waiting period and now find ourselves recovering from surgery and are here to support you as you come to terms with this bump in your life. It is a surprise, even a shock right now but at worst you have a problem that can be fixed and fixed so well you can live a normal life. Take care.

Larry

 

[Penny]

Mine was diagnosed when I was 25 and I am now 44. As noted above, it could be years or maybe never that you require surgery. I know it is pretty scary when the doc tells you what could be needed down the road. My advice to you is to enjoy life to its fullest right now. Try not to put too much energy and thought in the future for what really truly matters is right here, right now, in the present. Sounds like you will be pretty busy with the baby stuff in a couple of weeks. Congrats in advance. Welcome to the forum!

 

[heartman77]

Mauck.....Nice to see you here..altho I'm sure you would rather not have to be....but this is a GREAT forum with WONDERFUL people........I was 55 before anyone found i had a bicuspid aortic valve .....and a very diseased one at that. But I am post op now and as Andy said....in several weeks/months i plan on being able to function as before and have the same quality of life... Lots of Heart Love.......Michael

 

[epstns]

Mauck, I'm another of those whose BAV and stenosis was not diagnosed until "near" middle age. I was 52 when a new doctor asked "How long have you had that murmur?" The history continues to unfold. I am now 62 and still in The Waiting Room. We figure I still have nother year or two before it is time for surgery. In my like so far, I have been in the military, played sports, run/jogged many miles (and still do, albeit slower). I, too, had anxiety attacks and insomnia when first diagnosed, but then I decided that there was nothing I could do any differently than I was doing, and decided to simply get on with my life. The last 10 years (has it Really been that long) have been good years, especially with the help of the family here at vr.org. My advice is to keep up with your monitoring, but feel free to go ahead and live your life. Find a care team you trust, and trust in them.

Welcome to The Waiting Room, the virtual room where so many of us await our own turns at valve surgery. Visit often, ask lots of questions. The folks here are a wealth of real first-person experience, and they are most willing to share it.

 

[drivetopless]

Hi, Mauck- Welcome to the BEST place for support and information.
I was in my 30's , too, when I was diagnosed and the story was similar to those above. Boy, was I scared. I remember the heart like symptoms that were induced by panic and stress, so try not to freak out. I still get those every time my cardiologist check up rolls around. It's been 13 years of waiting and watching, and I'm coming up on a surgical date soon. The only restriction I've had in those 13 years was not to run marathons. So, while it is scarey now, if your diagnosis is mild you probably do have years before surgery. Take care of yourself and enjoy them!

"Why would it take until I am 36 to find the BAV?" The associated stenosis is probably just now getting narrow enough to create some real noise.

"Could they be wrong about the BAV diagnosis?" Sure, but probably not. It's very common -- 1 to 2% of the population. I took comfort in that fact.

"Any suggestions for getting my head around the possiblity of surgery if it comes to that?" Learn all you can about your options. Since it may be a while for you, the good news is that by the time you need surgery there may be even less invasive technologies. I would suggest you keep up with your aortic valve diameters and pressure gradients each time you get an ultrasound of your heart. When your valve get's under .9 cm2 or so, it's time to start paying attention.

Good luck and Welcome!