New here and thanks in advance

[Guest]

I am 50 and in very good shape, I work out 5 times a week, play softball and golf and stay active. So I had a regular appointment with my GP a couple of weeks ago and he tells me he hears a murmur and wants me to see a cardiologist. I was somewhat familiar with murmurs as my daughter has always had one but this was totally out of the blue for me. I have had this guy for years as a doctor and never a mention. So, reluctantly I go to a cardiologist last Thursday. He tells me the murmur is almost certain to be a bicuspid aortic valve and on the 1 to 6 scale I was at least a 4 and that I would most likely need surgery and sooner rather than later. So I leave feeling like I had been hit by a train and tried to make sense of it. I was too stunned to think of any questions to ask at the time.

How did I make it 50 years with what is likely a defect from birth without it being detected? I have had regular dr visits forever.

How in six months did I go from nothing being detected to needing surgery?

Why do I not feel like I have a problem?

So after some research, thanks to all here, and some reflection, I think I may have been having symptoms for a while and just thought they were normal parts of aging.

So, my echo is in 4 days and will likely determine how things will proceed.

The site has helped with the anxiety around all of this, I mean going from fine to needing open heart surgery all within a few days was a lot to take in, and now at least I can have a meaningful discussion once I know what I am looking at.

 

[cldlhd]

You will find that there are a lot of people out here familiar with how you feel . I felt exactly the same way a little over a year ago. I was about to turn 45, also in good shape and just got the ' all good' from my physical but I requested a stress test. To my surprise the echo showed a bicuspid valve, didn't even know what it was then, and an ascending aneurysm to go with it. I was also told I had a murmur over the years but as the doctors thought nothing of it neither did I.
I had surgery on Feb 7th , the valve was repaired and the aneurysm was replaced with a graft. I'm recovering well . Its a beautiful sunny 65 degree day ,took my bike for a nice long ride,did a little yard work,picking my son up from school in a few minutes. We're heading down to home depot ,hopefully find some straight 2x4's for a home reno I'm in the middle of, then homework and off to baseball practice. The point of all that is the fact that you're relatively young and in good shape means you're much more likely to fully recover if you need surgery. I was told I have no restrictions once fully healed.

 

[knotguilty]

I was pretty much in the same boat. Random doctor visit he hears a murmur. Never had one all this time. Exercised a lot. A year later, a new valve. I can say I tolerate exercise so much better now. Never recognized I had symptoms. All them symptoms are gone now. I can tell you that you are typical statistically, and you being in good shape will most likely tolerate and recover from surgery rather quickly. Good luck with the tests.

 

[Boomanchu]

I know how you feel, I was 54 in excellent shape, building retail store and putting most younger guys to shame......pretty cocky and indestructible. I hurt my back and was on some pain killers which I really don't take well so I figured that was I was losing some weight. While at my docs he said my heart rate was pretty fast and wanted me to go get an echo right then. After the echo I was approached by a cardiologist that informed me that I had endocarditis which had already damaged my mitral valve. I had to be admitted right then and there for antibiotics for a week to 10 days then 5 to 7 weeks of IV antibiotics at home. I would then need to have my valve replaced and I should consider artificial. When I said I had made a commitment to watch my dad for two days and "could come back thursday" he told me I might not make it till thursday. I can't begin to tell you how floored I was with this flood of bad news. On the bright side........being young and in good shape you will no doubt breeze through it and will probably be both relieved and amazed at the fact that you're sitting in a recliner joking with nurses and begging for water shortly after waking up. Now when people see my scars I just tell them I was shot foiling a terrorist attack and needed emergency surgery to remove the bullets...........or some other crazy bs story.

 

[AZ Don]

I can relate, but for me OHS was easier than I expected. At 51, on an unrelated test it was noted that I had a dilated aorta, but it was left out of the summary so 3!! Dr's did not notice it because they didn't read the 1 page report. I requested a copy of the test results and actually read it. Turns out I had a BAV as well as an aortic aneurysm. The first person to tell me I had a heart murmur was the Cardio-thoracic surgeon, who was the first Cardio Dr. that I went to. And he also told me that I needed OHS soon (I had it a little over a month later). I'm surprised that your Dr. is predicting surgery is needed before testing but a good Cardio can tell a lot by listening and the echo will provide more definitive info. If the results don't suggest imminent surgery then you will need to have regular follow-up echo's. Typically a year, more often as surgery gets closer. If surgery is not imminent then it is likely you can continue your active lifestyle though you should discuss with your Dr.

 

[TitanEddie]

I am the one who made the original post, seems the registration process on the site is a bit off. Anyway I just got the ability to post under my user and want to thank everyone for their comments. I too was wondering how he could be so sure from listening but he seemed to be pretty confident. Guess a murmur on that side could only be a limited number of things though. Anyway, echo Monday and go from there.

 

[big_L]

This was the worst time for me. Walking out of the doctors office in a daze, my wife crying the entire way. Unlike you, I knew I had a murmer, but the echo every year or two was routine. Kind of like getting the physical or a blood work up.

See how your echo looks. I'd start looking at surgeons and hospitals. Get a second opinion. This site can really help, which you already know.

I was 54 and in good shape at surgery. Routine workouts, nice BMI. Not the same waistline that I had at 20, but one a lot of people would kill for.

I was a lot more symptomatic than I realized. I can really tell now, as I don't get as winded.

I'd start doing something with your abs, if you need something to do. Try getting out of bed without using your arms and you'll see what I mean.

You'll be fine. We all made it. This is the worst time, it'll get better.

 

[MrsBray]

I went 33 years without mention of a murmur. A nurse practioner heard it at my DOT physical and diagnosed it (WTH?) as a level 5 out of 6. So I doctor shopped until I found a place to pass me on my physical so I could get a job and insurance coverage. I spent the next 4 months on WebMD (big fat mistake there!) and not telling anyone but my husband. Finally got to the cardio and did an echo. He said yeah, it's a murmur, more like a level 2. You'll probably need surgery in 30-40 years, come back in 5 years and we'll look at it again. Of course it degraded over time, and 10 years later I had surgery. Our bodies do their own thing at their own speed. With valve issues, there's not much (if anything?) we can do to prevent valve disease or degradation. That was my biggest hurdle - realizing there's not a damn thing I can do other than prepare my body for surgery. I, too, thought I was getting old. Nope, turns out 42 is too young to be getting old. I'm glad you recognize that you may be having symptoms. Murmurs are funny things - I went for a DOT physical 2 years before my surgery and the tech said she couldn't hear anything wrong with my heart. Even *I* could hear my murmur with a stethoscope!

And what big_L said, this is the worst time, the time with all the what-ifs and whys and what-not. It will get better! And you'll know more after the echo follow-up.

 

[Paul Schur]

We have identical stories. In June 2014 I was a happy, healthy 51 yo male, w/o 3-4 x a week, traveled the world a couple of times a year, just returned from trekking across Greece. Never had any symptoms of any kind. Nobody in my family had heart issues, not even a murmur.

One night I felt a small and slight flutter in my heartbeat and my gut told me to have it checked. When the doc asked how long I'd had the murmur and I said "what murmur", he sent me for an echo the very next morning. After the echo I was diagnosed with BAV. Not that you have it, but I later found out the first doc immediately knew after I said "what murmur". When asked to think about my energy level I realized I'd been feeling sluggish in the afternoons and kept saying, "so this is 50." I've since had surgery and "so this is 50", wasn't. In Feb. 2015 I trekked across Argentina and all was and is well. And that afternoon sluggishness? Gone.

This site/forum not only kept me sane through the process but I had no surprises because people here are so available and willing to give information about their experiences. Good luck with the echo, keep us updated and keep asking questions here.

 

[TitanEddie]

Echo pretty much confirmed. Only a tech but I knew enough going in to ask some questions and got my answer without really getting my answer. Was told doc would get the results by the end of the week going in, going out said doc would have results tomorrow. So, looks like this journey will get rolling pretty soon.

 

[Paul Schur]

Yeah, a tech isn't supposed to tell you anything. My case was the extreme end of the spectrum. I found out June 1 and had surgery June 25. It took me a few days to wrap my head around it. Don't go near WebMD. If you have BAV, it's seemingly really big at first. But in the end it helped me to understand that it's just a valve. And in their world an easy fix. Once I understood that part of it (it's just a valve became a bit of a mantra to me) I was able to deal with it and make my plan.

 

[TitanEddie]

Didn't really come right out with it, asked about calcium and he said it appeared calcified, he asked if I wanted a picture and I asked him if there were going to be more of them in my immediate future and he laughed and said yea. Seems to go along with what the doc said. He never would just say what he thought but would nod at some of the questions. Told me if I haven't heard from my cardiologist by Wednesday morning to call the cardiologist. So I pretty much know the what, just the how and when now. Good guy though showed me exactly where the concern from my cardio guy was and how the blood was flowing through the valve.

 

[DanielB]

Similar for me. I was 50 YO seeing a doc about a shoulder injury and she asks 'you know you have heart murmur, right?' No, was my answer. I had a long history of very good health with no murmur. I saw my regular doc and he felt it was not too bad, but ordered an echo The echo comes back and the next thing I know I am sent to a cardiologist. where I learned I has aortic regurgitation with an enlarged aorta. I was floored. I asked if he was sure and he was, but said we could do a TEE for a more detailed look. That showed my valve was not bicuspid as he expected, just leaky – does not know why, moist likely a flaw from birth that took this long to get bad enough to be noticed. I had no symptoms for about a year, then started getting winded easily, so a new valve was put in. All good now. Having found this site will be a big help in getting info to help you ask good questions for your cardiologist. In any case, it’s good the caught it now and can keep an eye on it before it causes any problems.

 

[cldlhd]

Yeah, a tech isn't supposed to tell you anything. My case was the extreme end of the spectrum. I found out June 1 and had surgery June 25. It took me a few days to wrap my head around it. Don't go near WebMD. If you have BAV, it's seemingly really big at first. But in the end it helped me to understand that it's just a valve. And in their world an easy fix. Once I understood that part of it (it's just a valve became a bit of a mantra to me) I was able to deal with it and make my plan.

I said to my surgeon " so you're basically a very well plumber?" Which he seemed to get a kick out of. My valve had minor leakage but after surgery it had no leakage. that doesn't mean it will stay that way, obviously, but it is possible if you get the valve repaired. If its heavily calcified I imagine they'll have to replace it. I had no visible calcification before the surgery although the report I received post surgery said the valve was decalcified so I guess there was some in there.

 

[TitanEddie]

Received results from my test today. Moderate to severe stenosis, no regurgitation, no dilation of the aorta. Will need to be replaced, appointment on 5/4 to discuss timing and options. Limit exercise and stress. Not all bad I guess. At least the call wasn't, one of those you need to come in right away kind of calls.

 

[Paleowoman]

Hi Eddie - just seen your thread. I was 25 when I saw a doctor for a chest infection who said "you have a heart murmur". I was very surprised. Investigations back then were inconclusive though a cardiologist was sure I had a bicuspid aortic valve. Nothing was done. Nothing more was said. Fast forward 28 years and a gastroenterologist who I was seeing heard the murmur and said i should see a cardiologist again. This time bicuspid aortic valve confirmed - echocardiograms were more accurate by then ! Had yearly echos from then onwards and another seven years later, when I was 60, I was referred for surgery. I was symptomless right the way through, even the day before surgery !

You may want to research your options now so that you are in more of a position to discuss them. The forum is a great wealth of information and support !

 

[TitanEddie]

I do have a question. Everyone keeps asking me if I have symptoms and I tell them I don't know. I mean this is not something that just comes over you all at once, from what I have read it builds up over years. So my point is how do you separate what happens as we age from the valve problem? I can't do what I did at 30 or even 40 as well as I did then but most 50 year olds would say the same. Do I get winded when I exercise, well yea, that is part of what is supposed to happen when you exercise. They told me today those questions and their associated answers would determine my course of action.

 

[pellicle]

Hi

I do have a question. Everyone keeps asking me if I have symptoms and I tell them I don't know. I mean this is not something that just comes over you all at once, from what I have read it builds up over years. So my point is how do you separate what happens as we age from the valve problem? I can't do what I did at 30 or even 40 as well as I did then but most 50 year olds would say the same.

its a tough question but a good question. I reckon its like changing tyres on your motorbike, you often don't notice the loss of grip but when you put new ones on its "wow"

The degradation of health over time and the "can't do what you could" is tough because while its true its also a matter of scale. Do you drop one or two points or 10 points? Comparing ones self with others is fraught because at 50 I can out run most of the 25 year olds in my office, but I'm in IT ... my metric is that in 2013 after my 2011 surgery I had got up to a level of fitness which was higher than my 25 yearold self but that's because in the leadup to 25 I couldn't train much I had a surgery at 28 to get a homograft and so I could feel something was heading wrong in my response to training at 47.

 

[TitanEddie]

In IT myself. Always tried to keep in shape, all I have been told is if you don't have symptoms do what you want but you should have some symptoms. Certainly don't want to keel over in the middle of a softball game. Guess maybe I should side on caution for now.

 

[dornole]

In my case I wrote off stenosis so severe that it caused pulmonary edema and congestive heart failure to pregnancy. Dur.

I agree about the "exercise is supposed to make you short of breath" wondering. One thing I find comforting is that I started using a heart rate monitor when exercising last year (when I was feeling weirded out after being put on more frequent monitoring). I feel like it gives me an objective read on how hard my heart is working when I do certain workouts on a treadmill. So rather than wondering if I am losing fitness when I wouldn't expect to be, or thinking "gee should I be this winded doing this?" I can take the anxiety and uncertainty out of it.