Newly diagnosed - some questions

[ks1490]

Hello all, I am very thankful to find this site. I was recently diagnosed with aortic regurgitation, which came to me as a total shock. I'm 38, I had seen a cardiologist annually for 5 years for an annual stress test and echo, just for preventative reasons, since my father had passed away of a heart attack. My cardiologist had never indicated that there was a problem, my cholesterol/bp were always very low, nothing showed up on stress test/echo, never had any symptoms. One day my boss was raving about his cardiologist so I went to him just out of prudence, wanting to get a second set of eyes on me. After listening to me for 10 seconds, he said "how long have you had the murmur"? Subsequent echo and catscan ordered by him indicated moderate to severe regurg. I've subsequently had the diagnosis confirmed by a 3rd cardiologist.

My initial questions, mostly coming from the shock of it all, are - is it possible that my first cardiologist just completely missed my regurg and it was there all the time, or is it possible for it to appear quickly? There were only 2-3 months separating appointments, so it seems to me highly improbable that this condition would arise within this 2-3 month window.

Second question - I see from other posts that most valve problems only get worse, but I was wondering if there's anything I can do - lose weight, exercise more, etc., to forestall the need for surgery as long as possible? I'm taking Coreg and Norvasc as prescribed, but I'd like to think that there's more that I could do. My wife and I have a new baby and I'd like to forestall this (as I'm sure you all would) as long as possible.

Many thanks for your replies.

 

[Karlynn]

Welcome to our site. I'm glad you found us. It's always shock to find out your heart has problems.

First of all - you will want to keep your own set of records from any tests you have done. By law, you are allowed to have these. They may charge you a small amount to copy them.

Secondly - it's doubtful that mod - severe regurg is going to get better. However, it will benefit you to be as healthy as possible. Ask your doctor what level of exercise he would recommend for you and then start a program.

Third - it is a little suspicious that your first doctor never heard your murmer. Or he may have and just never mentioned it because he is of the old school that only old people have valve problems to be concerned about.

We have lots of members who have been where you are at now, and I'm sure many will be along to welcome you.

 

[MikeHeim]

Is it possible that a murmur developed over 2-3 months? Perhaps. Last June, I had a stress echo because my neck was bothering me. I had been tested every which way they knew how and had any issues in my neck area ruled out. As a last resort, my Endocronologist (sp?) sent me for the stress echo because valve regurgitation can sometimes cause chest pressure. Please realize that I had absolutely no other symptoms of regurgitation at that time (I had also never been told I had a murmur). The echo showed that I had mitral valve prolapse, but did not indicate any regurgitation. About six weeks after my echo, I suddenly could not run more than 2-3 blocks without beginning to wheeze. I am a marathoner and I had never had any issues of this type ever before. I went to the GP and that was when I was told that I had a murmur. He sent me back to the same Cardiologist, who subsequently listened to my chest and told me that he thought my prolapse had deteriorated to regurgitation. After a TEE and Angiogram my regurg was determined to be severe. I had surgery in December. I have never read anything on the internet that indicated that a valve can deteriorate so quickly, but it would seem that mine must have.

I'm pretty sure that there isn't anything you can do to improve the condition of your valve. I am 28, not even slightly overweight, have low/normal BP and cholesterol, and an exercise fiend. Didn't help me much. One thing you should avoid is weightlifting. Lifting (especially very heavy weights) puts a lot of sudden stress on your heart muscle and can cause a bad valve to get worse more quickly. More than likely that is what happened to me. I was also told to keep my exercising heart rate under 130.

Sorry to hear about your diagnosis. The shock of finding out that I needed open heart surgery before age 30 still hasn't worn off, and my surgery was over two months ago!

 

[Georgia]

Welcome. I ditto Karlynn that you consult your cardio re: exercise. Many cardios limit exercise - particularly weights - when there's a valve problem. Additionally, a lot of valve problems are accompanied by aneurism issues, so it's best to consult the doc.

I'm so sorry you're having these problems just when you feel you need as much energy and health as possible. However, be glad it was found, because others have gone for years without a diagnosis. And this way your doc will be following you and won't allow your heart to have permanent damage as the valve worsens.

 

[Ann L]

Hi there and welcome. I am new to this site and know how you feel about finding it. Having been through too many surgeries to mention, murmurs were heard after a post-car wreck checkup at a hospital. Shortly thereafter, I was diagnosed with moderate regurg in 2 valves and mild in 1 other valve. The doctor who first heard the murmurs looked like Gandolf from Lord of the Rings, i.e., a real elderly doctor. In your case, it's inexcuseable that a heart doctor didn't discovered your problem earlier! I wonder if your original cardio doc has received the new diagnosis?

Thank heaven yours was discovered when it was, especially having reached the severe stage. Hopefully your new cardio will appropriately address your treatment and SYMPTOMS. I say that because I've recently come to appreciate how important it is to be fully engaged in your treatment.... and I credit that to the folks on this site!!

BTW, congratulations on your new baby.

 

[epstns]

Well, ks, you are among many of us who only learned of our situations when some doctor asked "How long have you had the murmur?"

That's how my saga began. I had been concerned that my energy level had declined over the past 10 years or so, and didn't think age was the only reason (I was in my mid-50's). My internist just said "You're slowing down as you get older. Get used to it." She said nothing about hearing any heart abnormality.

I then pressed for a referral to an endocrinologist for a thorough work up to see if there were any endocrine problems, and HE was the one who asked me "How long have you had that murmur?" He then strongly advised me to have it evaluated, and the rest is history. I have since "fired" one cardio and moved on to a second. This doc is very easy to work with, and has a practice specialty in valve disease among "younger" (non-geriatric) patients. We get along just fine, and I'm dealing with the situation as well as I can. That's all we can do -- learn all we can and then just do the best we can.

Welcome to The Waiting Room -- the virtual room where many of us await our turns at valve surgery. Ask all the questions you want. I would bet that the best sources of real life information are here and will answer each question.

 

[Mary]

Hi!
I'm another member who learned I had a murmur at the age of 48. I hadn't been to my PCP in several years, and when I went for a physical, he said, "Have we heard this murmur before?" I kind of shrugged it off, because I knew many people who had heart murmurs, and THEY never needed surgery. Unfortunately I wasn't in that group. I was in the BAV crowd and had a stenotic valve that was replaced last June.

I would like to add my own cautionary note about lifting weights. I have always been very physically active, and I think that heped me postpone surgery as long as it did. However, about six months before the murmur was discovered, I started lifting weights, and I instinctively felt like I was making a mistake. My body seemed to react in a manner that it never had before. I was exhausted after lifting weights, even though I could swim a mile easily. I still think that I hastened my valve's decline, but I can't prove it. Even though I've resumed swimming and some jogging, I doubt that I will ever lift weights again. I don't want to take the chance.

 

[ks1490]

Thanks to all for your very kind replies. I'm going to a third cardiologist on Friday for an additional opinion. I'm sure I'll have additional questions, I greatly appreciate your help.

p.s. What is a TEE? To date, I've just had echocardiograms, catscan and cardiac MRI done.

 

[Georgia]

Trans esophageal echocardiogram - they numb you up and put a thingee down your throat so they can get a really good echo of your heart without the interference from the sternum & ribs.

 

[aussiemember]

p.s. What is a TEE? To date, I've just had echocardiograms, catscan and cardiac MRI done.

I'm having one done on Monday. I'll come back and give you a report - seems to be relatively straight forward from what other people on here have posted.

 

[aussigal]

Hi and welcome from another BAVer who only recently learnt she had been living with a congenital heart defect all her life and that I passed it on to my 3 kids as well...

This is the best place to learn from those who have been there personally...I came here 4 or 5 months ago scared-stiff and am now eagerly awaiting my surgery!

 

[ALCapshaw2]

Welcome KS,

One of our favorite sayings on VR.com is
"The worse it gets, the faster it gets worse".

Another is "SOONER is better than LATER" when it comes to surgery. As valves close down, internal heart pressures go up to pump enough blood for your body. When the heart begins to enlarge muscle damage is beginning to occur. Over time, this can become PERMANENT DAMAGE that CANNOT be reversed by surgery.

Many cardiologists like to 'wait and see' (which often leads to permanent damage) while most SURGEONS like to operate BEFORE permanent damage is done to the muscles and walls of the heart. Fortunately, (some) cardiologists are 'beginning' to see the wisdom of early intervention. One reason is that success rates for first surgeries in patients under age 60 are >98%.

'AL Capshaw'

 

[Teresa UK]

Hi, KS1490, Bit of a shock, isn't it. I'm yet another person who discovered out of the blue last year, at the age of 46, that I had a heart murmur/bicuspid aortic valve ..... Nothing had been picked up previously despite having had (unrelated) surgery three times, and regular "check-ups" (for employers), plus all the monitoring that goes with pregnancy and caesarian childbirth (twice). Some symptoms and a significant reduction in energy had been attributed to other things. However, I can confirm that over the last 12 months my condition has deteriorated quite quickly - during one particular three month period my stamina noticeably decreased almost on a weekly basis, measured by how far/long I could walk before becoming painfully out of breath, which was subsequently confirmed by test results. I would definitely say there can be a rapid decline where symptoms suddenly present themselves. But, I would also guess that doctors sometimes notice small "signs" which could be something and nothing, and they make a decision to do nothing until it becomes something! I'm not sure how my life would have been different if I had known for some years that I would eventually need a valve replacement. Maybe I would never have had children. Maybe I would have spent years in fear analysing every twitch and twinge. Perhaps it was better that I didn't find out until I was almost at the point of needing surgery - less time to worry. I do agree with Rachel that sometimes we instinctively know that something isn't quite right, without any definite symptoms as such, and it certainly sounds like you had a sense of something needing attention. I asked my cardiologist if there was anything I could do to delay the valve deterioration or strengthen my heart in some way to compensate for the valve problem. Having established my diet is healthy and my weight is reasonable, the only thing he recommended was to stop doing strenuous exercise at the gym and revert to lots of gentle walking. Good luck on Friday.

 

[Praline]

I can identify with the shock of finding out you need surgery

I can identify with the shock of finding out you need surgery

Hello,
November 4th,2205, I went for my yearly physical, never thinkin gthere wa sanything wrong. When she listened to my heart, she kind of frowned. She said, " I don't like what I hear."
She explained that she could hear a very irregular beat and she wanted to check it further. She sent me for an EKG right then and there.When she saw the EKG results she explained that it looked like atrial fibrillation and after explaining what that was, she said it could be treated with medication. There was a cardiologist on staff and she had me go talk to him.
He looked at the EKG and said he needed further testing.He sent me for an echocardiogram. The echo showed severe mitral valve regurgitation. He prescribed medication, including coumadin, and said it was very possible I would be looking at surgery. He made an appointment for a TEE. I had the TEE done November 22nd. I was scared but it was nothing to worry about...just a bad sore throat the next day.
When I went back to talk to him, he said the TEE showed the same severe regurgitation as the echo. He strongly recommended surgery before it got worse and affected my heart.
I then went for an angiogram and they found a blockage. I went for a second opinion and this cardiologist also recommended surgery. My next step was talking to the surgeon and he agreed with the others.

I had surgery January 18, a mitral valve repair, one bypass, and Maze procedure.I am now home ready to start Cardiac Rehab.

I am a lot older than you are(64). I don't know if that makes things easier or harder to deal with.I never gave my age a thought before. But all of a sudden I feel old. In the last 6 months, I have run away from Katrina, lost my school to this hurricane, found I had serious heart problems, had open heart surgery, and now am ready for cardiac rehab. No wonder I feel old..that is more excitement that all the rest of my life until now...

I did not mean to talk your ear off..sorry..I sure wish you luck. I hope you keep coming back here to let us know how you are doing.

 

[Graveheart]

Just found out myself.

Just found out myself.

I was feeling fine as always when I turned 40 in November, I decided to get a check-up, figuring I would just "check the oil and tires". Then I heard the "Did you know you had a murmur?". Even then I was cool because my 43 year old brother had just been diagnosed with mitral valve prolapse - "no big deal" he said. I went for the echo and got the call the I had mild to moderate AR, and to check in with a cardio - probably come back in a year for another look. Still cool, I guess.

Saw the cardio on Valentine's Day (ironic?) and he said, "no it's moderate to severe". Now I'm freaked. Right on the border, 55%EF, etc. Took a stress test and passed it with flying colors and told to come back in three months.

Now I'm going to start over and see Dr. Corso director of cardio at Wash Hospital Center for a second opinion on March 14.

Haven't really slept well since.

 

[aussiemember]

I was feeling fine as always when I turned 40 in November, I decided to get a check-up, figuring I would just "check the oil and tires". Then I heard the "Did you know you had a murmur?". Even then I was cool because my 43 year old brother had just been diagnosed with mitral valve prolapse - "no big deal" he said. I went for the echo and got the call the I had mild to moderate AR, and to check in with a cardio - probably come back in a year for another look. Still cool, I guess.

Saw the cardio on Valentine's Day (ironic?) and he said, "no it's moderate to severe". Now I'm freaked. Right on the border, 55%EF, etc. Took a stress test and passed it with flying colors and told to come back in three months.

Now I'm going to start over and see Dr. Corso director of cardio at Wash Hospital Center for a second opinion on March 14.

Haven't really slept well since.

Hi, and welcome. You'll find this site a fantastic source of information from people who have "been there, done that". I also have MVP with moderate to severe regurgitation. And like you I have no symptoms and can cope with exercise. I've just had further tests done and see my cardiologist at the start of April. Let us know how you go with your second opinion consultation and if you have any other questions - there's bound to be someone around here who can help

 

[ks1490]

Graveheart - I didn't have trouble sleeping but did have anxiety-filled days for about 2 weeks after the diagnosis, I still get it from time to time. The worst is if I'm home with nothing to do, there's nothing else to think about except obsess about every little twinge or sensation in my chest, however benign. The way I've dealt with it is 2-fold: i) getting as healthy as I can, losing weight, doing light treadmill work, and ii) educating myself as much as possible about my condition, both on this site and using the web and other resources. Once I convinced myself that that's all I can do, I felt much better.

Good luck with your second opinion. My second opinion basically confirmed the first, although his outlook and demeanor were a bit more optimistic.