BAV since teen, worried about future

[nate99]

hello all

i just recently found this forum. When I was in high school a doctor detected a slight murmur. Was diagnosed with bicuspid aortic valve. Was told that this was a problem I would need to worry about far in the future.

fast forward to today and I am 36. I can’t say for sure I have had any symptoms, maybe just an awareness of a feeling in my left side of chest lately. No pattern to it and I never feel it with exercising. I run less but I figured it was because of my knee injury that I got in the last 2 years. I have anxiety disorder that has hit me harder than in many years recently so it could be just in my mind. The anxiety has really taken me over and I have not been able to stop thinking about my heart valve and when I will need it replaced. I’m very scared. Not married, no kids but great and supportive family members.

two years ago I asked my doctor to look into how my heart was doing. I had EKG and Doppler/ultrasound. The general practitioner simply said that everything was ok and didn’t require follow up. At the time I was thrilled and again put it out of my mind for years. The anxiety has forced me to start really thinking about this. I discussed heart surgery with my cousin and found that he had a mitral valve replaced with a mechanical. He did it twice as the first surgeons tried to repair it which led to additional problems. He then found Cleveland Clinic and all was well afterwards. He gives me encouragement, but I’m still terrified that one day I won’t make it out of that surgery.

Im visiting family in another state right now and being an absolute downer due to my anxiety. I’ve scheduled a new EKG for July 24, a meeting with my general practitioner the next day, and this time I will be much more insistent that I start to meet with an actual cardiologist.

I wished really hard that against all odds I would be one of the lucky BAVs that never needs surgery but I am now pessimistic about that. Whether one month or 20 years later, my heart will start failing. I’m having difficulty coming to terms with it. I know that anxiety doesn’t help anything ultimately and can mess up what time we do have, but it feels like a hole has been blown open in my mental world. I know it’s no ones job to make me feel better, but I’m hoping this forum can make me feel better

nate

 

[Superman]

Unfortunately we are all responsible for our own feelings. While we can’t make you feel better, perhaps some our stories will give you information that will improve your outlook.

My stort is out here a few times I’m sure. Diagnosed as an infant. Grew up with many restrictions. My BAV was both stenotic and leaky throughout childhood. I always told people my valve didn’t open all the way and it didn’t close all the way.

I had it replaced with a mechanical just before my 18th birthday. I’ve been taking Warfarin ever since. I had an aortic aneurysm when I was your age for a second open heart. Still with the mechanical valve.

I’m in my mid 40’s now. Married. 5 great kids. Active. I work out at the local club, run, bike, etc. I’m around the same weight I was when I graduated high school.

This is a very livable condition. You’ll be fine. The thing I’m surprised by is that you aren’t being followed by a cardiologist. I hope that gets sorted out for you.

 

[nate99]

Yes in retrospect I’m really lucky nothing has happened since diagnosis. I can only guess that all of my doctors have just assumed they would wait until I had any symptoms. With what I know now, seems like a really dangerous approach.

 

[dornole]

Do you live someplace or have the kind of insurance that denies you access to a cardiologist? Do you actually NEED permission from your GP to get specialist care? Didn't a cardiologist read your echo? (assuming that's what you mean by ultrasound).

I know when I was first diagnosed I was confused about electrocardiogram (EKG) vs. echocardiogram (ultrasound). The only time I've had an EKG in 16 years of valve monitoring was when I mis-communicated to a clinic. It's the echo that is used to monitor valve function and it needs to be done by an echo technician and read by a cardiologist.

If there's not a barrier to care, I'd definitely just go get a baseline echo from a cardiologist and then follow his or her plan for ongoing monitoring and follow-up - this is the right thing to do if you have BAV.

I'm sorry for your anxiety and encourage you to treat it as assertively as possible. If you hang out here awhile you'll find all kinds of people who have had tough hands dealt to them. That's just life and normal in a way. I hope that taking action and gaining perspective will help you feel better. Hugs.

 

[nate99]

I live in Southern California and have Kaiser Permanente. I think everything goes through the GP. EKG vs echo is something I just learned but two years ago kaiser scheduled me an EKG and when I was notified of results they referred to Doppler/ultrasound results. It was a bit confusing. The GP is the only person that has directly communicated with me. I’ll call kaiser right now and try to figure this out. Thanks

 

[nate99]

I have a phone appointment scheduled with my doctor in a few hours. I called kaiser and yes the GP has to refer you to the cardiologist in their system. I may need to exit the kaiser system if things are this much of a hassle

 

[Paleowoman]

Hi nate - the murmur from my bicuspid aortic valve was first heard when I was 25 when I'd gone to a GP because I had a chest infection. I was referred to a cardiologist who said it was BAV but nothing more was done, no follow ups. I didn't have any symptoms, but 28 years later another doctor heard the murmur and sent me to a cardiologist who wanted to follow me up with yearly echocardiograms. When I was 60 I was referred for surgery. Still no symptoms but the cardiologist and cardiac surgeon felt the time was right due to the high pressure gradients. I think I might have been able to carry on a couple more years since I was very fit and healthy.

Just keep your health and fitness up as best you can, and get checked out if anything worries you. All the best !

 

[tom in MO]

My murmur was known since childhood. It actually went away for awhile. I saw my first cardiologist when my echo-cardiogram showed degeneration. Before that, my echo was scheduled by my GP and assessed by the imaging doctor and my GP. Once it showed degeneration, my GP referred me to the cardiologist and he took care of my heart from then on.

You are getting older, so it's normal for you to slow down some. If you are not getting dizzy, winded going up stairs, feeling faint, I would rest easy that you are fine and enjoy your vacation. From a paper I read the median age for valve failure due to BAV is 57.

 

[dick0236]

I was told of my murmur when I was in my teens and long before OHS was available. Made it to age 31 before surgery was performed. Now doing very well at age 82. Keep your murmur monitored and when the time come have corrective surgery. This surgery, while major, is routine in the US and results are almost always positive......unless the patient tries to "wish the problem away" and waits too long.

 

[nate99]

Thanks for all of the advice, in a time of high anxiety like this it means a lot. Just got off the phone with the general practitioner in a phone consultation. In some ways I'm more confused than before because what he said seems to contradict a lot of what I have researched.

I discussed wanting to meet with a cardiologist regularly and he explained that when I got my echocardiogram in the past, it is looked at by a cardiologist either in person or virtually, so he said that I won't necessarily get any more benefit by going straight to a cardiologist. I asked him if I can still see one despite what he is saying and he said sure, after my next echo on the 24th we could discuss it.

I talked to him about my anxiety and some strange sensations in my chest and he feels it is most likely in my mind. We discussed my previous echo from a couple years ago and how he didn't give much information in just saying everything is OK. He elaborated that two years ago my heart looked perfectly normal, no signs of stenosis or regurgitation or dilation. There were no issues with the structure of my heart. He said it was basically like a normal heart. He said not all BAV hearts need treatment, and on this I really disagreed from what I read that the vast majority will need something at some point. He asked me where I found that info but insisted that is not what his research says.

It worries me because I like what he is saying but it doesn't sound right based on my research. We discussed what treatments there are and he was also convinced that there could be minimally invasive catheter ways to treat this if the time comes. Again I said that I had read that OHS is gold standard. He emphasized that right now I am really jumping the gun and I need to remain calm. There are no signs at this point that anything is even won't. Just wait until the cardiogram on the 24th and schedule something with him a couple weeks later as if I see him the very next day, a cardiologist might not interpret it by then.

Do I feel better? Worse? I would rather feel confident that my advisor knows exactly what he is talking about.....

 

[Paleowoman]

Hi nate - When you have an echocardiogram they are looking at the functioning of the valves in the heart and, in particular the pressure gradients across your bicuspid aortic valve and the valve area size and function of the leaflets. They also look at your ventricles and your aorta. The measurements are taken and a cardiologist can tell from them if there are any concerns. With bicuspid aortic valve the pressure gradients can gradually rise as the valve leaflets get stiffer/calcified, or the valve can regurgitate, and this is what they will watch for. if the pressure gradients rise to a certain point they may decide to increase the frequency of the echocardiograms. A cardiologist really can’t tell any more than what he sees on the echocardiogram. Once things begin advancing people are generally referred to the cardiologist in person, but I can’t remember any cardiologist dong any more than look at the echo results and interpret them and ask me how I was. I always asked for a printed copiy of the echocardiogram results (I still do post-surgery) - that’s something you could ask for. Then as you have more echos you can see for yourself if things are advancing or remaining stable - I used to keep a graph

 

[Zoltania]

Hi Nate,

For what it's worth, I've had Kaiser (Northern California) for over 25 years and had my mitral valve repair surgery done by them. Everything went very well and the hospital care was excellent.

It sounds like your G.P. is making sense and knows what he is talking about. No need to jump into anything -- you have plenty of time to do research and learn about the options. In a way it doesn't matter whether "the vast majority" of BAV patients will need surgery or not, it only matters whether or not you will, and that could be any time or never.

When my mitral regurgitation first worsened and I was "in the waiting room," I spent a lot of time researching and trying to find evidence that I would not need surgery. I thought surgery would be the worst possible outcome and I really wanted to avoid it.

Fortunately I also researched what surgery would be like if I needed it, and I found this forum. When surgery turned out to be necessary after all, I was prepared, and the people here supported me (hi, Honeybunny!), and it wasn't nearly so bad as I had feared.

Dealing with anxiety is tough, and it's even harder if you have a real physical issue, since you never know whether to trust your perceptions of your body. I hope you're getting professional help to make this all easier to deal with. Glad you found this forum.

 

[pellicle]

Hi

I wished really hard that against all odds I would be one of the lucky BAVs that never needs surgery but I am now pessimistic about that. Whether one month or 20 years later, my heart will start failing. I’m having difficulty coming to terms with it. I know that anxiety doesn’t help anything ultimately and can mess up what time we do have, but it feels like a hole has been blown open in my mental world.

firstly I was diagnosed at 5, had my first OHS at 10, my second at 28 and my third (back in 2011) at 48, I take the total opposite view to you and feel that I was one of the lucky BAV'ers who got operated on so that my life could be pretty much normal.

I reckon sitting around stooling on the possibility, getting anxious about the unknown is what gave you anxiety. The reality is that surgery will simply make your life better. To use a Christian metaphor (which I hate to do) its like a baptism.

Each time before surgery it was obvious (in hindsight) that I was getting worse and that made the post surgery recovery (feels like crap at first) such a revelation of what I could do. My late teenage years were exhuberant because I'd been held back from 6years old till 12.

Same for my early 30's ... I was loving cycling past the 20 year olds on the tops of long hill climbs (planning and cunning beats sheer strength)

I travelled and got around totally unimpeded. When I went to Japan I had no job, but found one in 3 weeks. I've lived my whole life that way ... flowing where the current takes me.

Surgery is not a burden, its a liberation.

This lovely woman and I hiked a portion of the Great Wall (and she eventually became my wife).

and the wall is plenty steep ... you say you are suffering no symptoms, but I'm willing to bet "you're just used to them" ... like a stone around your neck you can't take off.

Now with my mechanical valve I feel that pretty much nothing is stopping me except the buildup of age (and small injuries that show themselves again 30 years later ;-)

Think positive and be the change you want, for there is only positive in getting it fixed.

Best Wishes

 

[pellicle]

...I would rather feel confident that my advisor knows exactly what he is talking about.....

sadly, far more than one would wish to be true, they don't. Get a second opinion.

I forgot to add that I believe that Anxiety is a modern reflection of the world not having sufficient threats. We are designed to be "jumpy" (as both prey and predator) but there isn't any actual threat in our worlds 99% of the time. Much like "being too clean" for kids has a strong linkage to immune problems (and many maladies are also linked to immune problems where the body attacks itself) being too safe makes our minds turn to attack itself.

I hope a hole has indeed been blown in your world for then some of the sunllight from outside can stream in and warm you.

Best Wishes

 

[JLmatus]

Nate,

It's natural to feel anxiety when you get a diagnosis that indicates that you may need open heart surgery at some point in your life. The good thing in your case is that your heart still seems to be fairly normal and you probably will have a long normal life before anything needs to be done. By that time heart surgery will probably be almost all minimally evasive. Or, maybe you will never reach a point where you need to have anything done.

I was 18 when my heart murmur was first discovered. It was discovered while taking a physical exam to join the military. The cardiologist gave me the green light and I served in the military for 15 years. I had my aortic valve replaced in May of 2017 at age 60. Up until 2 months before my surgery, I was very active and basically asymptomatic. I ran, lifted weights, played rugby into my 30's. I never slowed done accept for age related restrictions. Like you, I, at times, thought I felt a slight discomfort in my chest. Looking back I think that those feelings were more my mind playing tricks on me than actual heart related symptoms. I guess my point is, you have to find good doctors and rely on their advise. If you don't, you will let your life slip away paralyzed
by fear and anxiety.

Most of us have been where you are. It's a scary feeling. Like Pellicle said get a second opinion. If all is still good go out and live your life. When and if your ever need AVR surgery you'll find a good surgeon, get the procedure done and move on with your life. Good luck and just remember you are not alone in this journey.

 

[nate99]

Thanks for all of the advice. Being anxious all the time is no fun. I've had OCD, anxiety, depression diagnosed since HS. I wonder how I would be able to handle this all of I didn't have the mental disorders. This is the worst it's been in awhile.

The people here seem so brave and I hope I can emulate this when my time comes. I love hearing what my doc says but I also hate false hope that can be pulled out from under you. Right now this feels like something that will always be on my mind, but I'm hoping that my mental world will go back to normal.

Had dreams last night about my heart and woke up a couple of times with a brief feeling in my chest that quickly left. The feelings are still coming but they are less intense than a few days ago. I also might be getting sick as I've been having a sick feeling in my throat and sneezing a bit the last week.

Thanks for the help everyone. I'll update when I know more. One question, does anyone know or have heard of anyone that didn't need surgery from a BAV? Sounds like just a dream to me

 

[dick0236]

........One question, does anyone know or have heard of anyone that didn't need surgery from a BAV? Sounds like just a dream to me

My daughter-in-laws father almost made it all the way without surgery for BAV. He was 77 when he finally needed an AVR due to BAV.......he is 79 now. You are likely to waste a lot of your life worrying about the "what if". I visit 20-30 OHS patients each month while they are still in the hospital pre and post surgery and, almost all, handle it very well. BTW, most Open Heart Surgeries are for Coronary Artery Bypass Graft (the nurses and docs call it "CABBAGE"......CABG). That surgery seems very similar to valve surgery.......only worse since they have to invade other parts to the body to "harvest" the veins necessary to complete the graft.

A little worry and concern is good for us, both pre and post surgery, and helps us rein ourselves in before we do stupid things.....but I had to learn to keep it in perspective. Valve problems are fixable......and normally with little impact on your life. The axiom "the glass is half full or half empty....take your pick" comes to mind.

 

[JLmatus]

.

Right now this feels like something that will always be on my mind, but I'm hoping that my mental world will go back to normal.

Speaking from my own personal experience, the thought of a possible pending AVR will always be in the back of your mind. The trick is to not let it take over your life. As mentioned by others in this forum. Try to put things in perspective. Valve problems can be fixed. AVR is not a death sentence. It's not a terminal illness. It's serious, but AVR is also fairly routine and safe. Just remember there are plenty of individuals in this world with far more serious medical problems that are not so easily taken care of. Take solace in the fact that we have the medical technology to fix valve problems. That's the attitude that got me through the whole ordeal.

 

[nate99]

You are right. Perspective is important. I have two family members that have dealt with cancer, one who had surgery and it hasn't come back and another who just keeps dealing with more and more. In that respect, BAV is not as bad, in that the way forward is clear and proven. With cancer, the surgery seems less scary but the result can be very uncertain. There was one cardio surgeon in a video on YouTube that said if you could pick for something to be wrong with your heart, BAV is a pretty good choice. There are choices and they are proven safe and effective.

Hopefully this will be off my plate for awhile, and when I do have to deal with it, the safety numbers will be even better than they are now, but it seems like the numbers are pretty successful at the moment. Or maybe there will be some other path forward. Or maybe I'll just be a braver person by then

Thanks, and reading this forum does make me feel less alone in this

 

[Agian]

Yes Nate, before surgery, the eventual surgery was on my mind every day. After you get it done, you get on with your life. If
enough people can convince you that having a valve replaced is just a hiccup, then maybe you won't dwell on it like I did. Been there, done that. Enjoy your youth.