How do you think of anything other than possible surgery?

[MikeHeim]

I'll echo what several others on the site have said about the shock factor. I was 28 at the time of my diagnosis, and was absolutely numb for a couple days after I got it. I spent my entire college career ravaging my body with various chemicals, but I always kept running to stay in shape. I felt absolutely betrayed that the one organ I was trying to take care of was actually the one to fail me! Anyways, if your doctor says it's OK to run, then it's OK to run. I was told after my diagnosis that I needed to slow down a bit (I was running about 7:30 miles) and that I needed to stop if I got any SOB. I also quit lifting weights immediately.

As far as second opinions go, I have mixed feelings. I would say that if you are not comfortable with what the first Cardiologist tells you, that is probably grounds for a second opinion. By "comfortable", I don't mean that you have to like the answer. For instance, if you feel good, and the doctor says to hold off on surgery, I would think you should be comfortable with that diagnosis. When I was diagnosed, I had some of the valve regurgitation symptoms and was not at all happy with having an untreated heart condition. The tests (TEE, Angiogram) confirmed the severe regurgitation and the Cardiologist said I needed surgery. Basically, I knew that he was right and I was comfortable with the diagnosis and moved forward with it. If he had said that I was in perfect health and didn't have any valve issues, I would have definitely went for another opinion.

Others may disagree, but I don't like the idea of getting a second opinion just to get a second opinion. If they disagree, whose diagnosis do you accept? Are you then forced to get a third opinion to validate one of the earlier ones? Like I said, if the diagnosis you get makes sense with what you know and what you feel, I would feel fine with not getting a second opinion.

 

[Marguerite53]

Mary. I'm glad that we gave you some comfort! Please do let us know how the visit goes with the cardio. You're stuck with us now, kiddo!! We've got an eye on you!

As far as second opinions go, I didn't look for one.... I knew he was right. I just wanted a cardio who was hooked into the hospital I was considering going to, and someone who I connected with better.....just a chemistry thing. So I switched. Was amazed to get a wonderfully educated woman of very similar age. It really helps to have another female to talk to.

I did decide to seek a second opinion with surgeons because I wanted to be sure that my personal choices (valve, timing) were in line with what more than one professional thought.

Looking forward to hearing back from you.

Marguerite

 

[Der Biermeister]

Like I said, if the diagnosis you get makes sense with what you know and what you feel, I would feel fine with not getting a second opinion.

I didn't need nor sought a second opinion. The test results were pretty definite, along with my symptoms. All I needed to know was that my surgeon was top-notch.

Btw -- success is not just in the hands of the surgeon. YOU have to contribute too. You have to do everything they say -- and then some. They are not bs'ng you when they tell you to get moving and walk - and yet so many hesitate, with excuses, to do this. Then there is diet - it's hard to stick to what they want you to, but if you don't, you are contributing to the delinquency of a valve - something your surgeon tried to prevent!

 

[runningscared]

Hi Everybody,

Wow, I feel like you folks are all my new best friends.

I do have good news to share. I'm staying on this side of the mountain for now.

The cardiologists says "who knows, some time in the future I may require a new valve but at this time it's best to keep the one I have due to the fact that it is only leaking moderately".

He will monitor it once a year at this point, I can run, do whatever else I want as long as it's not TOO competitive. He said the best thing for me to do at this point is to make sure that my blood pressure stays normal, it was a bit high the last couple of times I saw him, so he wants me to get a blood pressure thing for home since I think it was just high only WHEN I was in the Dr.'s office. If it remains on the high side they will put me on a blood pressure medication.

I feel so relieved... I am going to hang around for awhile around here, as I enjoy learning as much as I can about it. Plus who knows, next year things could be different, I pray they won't be, but ya never know.

I just want to thank all of you again for kind words and putting me at ease when I really needed it. You'll all be in thoughts.

Sincerely,

Mary

 

[Ross]

Please do Mary. The funny thing with valves is that they can leak like that for a long time or they can get bad suddenly. One things for sure, it's leaking and it's not going to go away without intervention at some point. Sorry, don't mean to shoot down an otherwise upbeat post from you, just want you to realize that at some point in time, it will have to be dealt with. Until then, live it up and learn all you can.

 

[runningscared]

Ugh, well now I'm scared again. Should I be getting a second opinion? Am I stupid to wait a year before having another echo done?

I'm so confused...

Mary

 

[debster913]

Hi, there--
Don't be scared--by now you know many of us have been there, done that.

I would personally suggest a second opinion if you don't feel comfortable with what your cardiologist has told you. It definitely couldn't hurt...at most, the two doctors may very well agree on your diagnosis (which might be a good thing for you at this point). If not, then you have something to go on.

As for me, I've had mitral valve prolapse since birth, and in recent years, mitral regurgitation. It was just last April when my cardiologist did a TEE after expressing concern about my valve, and said that I wouldn't need valve surgery for a long time. Then, just over a year later (this April), I developed sudden symptoms and saw my cardiologist again. After several tests, (and even though my valve was only showing moderate leakage, but more than last year's TEE) he was concerned enough to refer me to a surgeon, who was actually my second opinion. The surgeon believed my valve is bad enough to have surgery now, and I'm likely having surgery this summer. This was only twelve months after my cardiologist said my valve would be good for years!

Like Ross said, valves can go on in their present conditions for years, or they can suddenly go bad. Don't let that scare you! Don't let the what-ifs prevent you from enjoying your life. I'd personally go crazy if all I did was worry about my valve. Again, just go for the second opinion if that eases your mind; or, if you feel that you trust and respect your cardiologist enough, let it go for now, be cognizant of your feelings, and see your cardiologist again when it's time for your next appointment.

Best of luck to you!

Debi (debster913)

 

[sylviayasgur]

on the other hand...the upswing....

on the other hand...the upswing....

hi mary,
welcome to this amazing place! i'm glad we can be here for you.

my husband, joey, knew from the age of 12 that he had a murmur. as an adult he did not follow up much until i met him and insisted he see a cardio annually. when his measurement was at 1.2, his cardio told him he would let him go until he was at 0.5, but that was the outer limit.
joey is a runner, biker and "ellipticalist" and his cardio made a point of telling him to continue his workouts as best as he was able to. (his cardio is a marathon runner and a strong believer is cardio strength).

it wasn't for another 4 years or so that he became symptomatic and unable to do his normal workouts. that was when he had his surgery.
so.....as ross said, it can be immediate, but it can also be after some time...

joey and i love his cardio and knew it was the way he told it, but we did get second opinions on the surgeons.

please keep coming back. this place is my savior.
be well, keep running,
sylvia

 

[Elise Lucas]

For Mary...don't be frightened

For Mary...don't be frightened

Hi Mary... I am a new member to your site and also belong to a site in Australia called Heartnet...very similar and that is where I found this site mentioned... don't be frightened I had my aortic valve replaced nearly four years ago and the best thing I did was talk to people who had had the op. These are the people who have been through it ...in some cases many years ago and are leading busy lives and playing tennis...(70year old lady) swimming (myself ...I swim about 12 50 metre (olympic length)lengths when I go to the pool) I walk forever (really only a couple of hours but no tiredness) and I publicise the Heart Foundation here in Western Australia. My valve was a congenital problem and I had a mechanical valve inserted (by the plumbers as my Professor of Cardiology calls the very expert and wonder ful doctors...tongue in cheek of course) and there are new advances everyday. One person I personally know Gerry who is involved with the Heartnet site is now 81 and leads a busy life... 23 years ago he had a porcine valve implanted (this must be a record for how long it has lasted) but I also know I felt blessed that at least we can do something about our health problem so many people never get a second chance ie people born 50 years ago perhaps or people who with a healthy heart just wreck it with bad diet etc etc... or people with a terminal illness.... of course you are frightened we all are but with our wonderful medical profession and the many advances you are in a great position to lead a normal life... I consider myself to have the same life span as anyone now who has not had a valve replacement... I have actually written a book called 'From the Heart' under the name Elise McCune and it has helped me spread the word of the positives involved... I had my book launch with the Heart Foundation (WA) just a few weeks ago and feel so happy to be able to share my experiences of heart disease.... I will endevour to help the Heart Foundation all I can and feel I also in the future might get involved in Animal Welfare... so I have a busy and rewarding life...good luck and please let me know if from my personal experience I can offer any non-medical advice....Cheers Elise