saw my cardio

[nicolep]

I saw my cardiologist yesterday, well his PA. and I was told that because I am so young that they arent going to do anything with me, and I am mad. She said that because I am only 29 that they dont thinkthat my symptoms are from my regurg, she said that mitral regurg wont cause dizziness and shortness of breath and chest pain which contradicts everything that I have read about the disease and wants me to see a neurologist even with my +3 regurg and symptoms. My husband went with me for the first time to the cardio and he has changed his mind about what is going on with me and now understand what is going on. And that is nice, he has realized that I am not kidding when I say I feel like I've been kicked. But I called my GP doctor and am going to get a second oppionion. The PA flat out told me that if I were older that the Dr would take me more seriously and she would recomend a new stress test but he wont order one because I'm so young and that just blew my mind. My husband was very upset and couldn't believe how I was treated. I was told that even though my HR is in the 40's and my BP was 112/52 that I am just fine and I dont need another appointment and should be seen as needed. Does that make any sense at all? I am confused.

What to do?

Nicole

 

[JimL]

A second opinion sounds like the right way to go.

Especially since you have some symptoms, which are not minor, you need to know the cause, whether heart or otherwise.

Especially since symptoms can be the heart's call for help, and the heart can be damaged if the root cause is not fixed.

You may be too young, or on the young end of their chart, but you are an individual, not a statistic, and you should be treated individually.

Because of my age, the doctors just assumed that my problems were rheumatic fever, instead of congenital. I don't think it much mattered for the treatment, but it was frustrating for them to be so prejudiced.

 

[Ross]

Undoubtedly get a second opinion from a Cardiologist, not a PA. You may have to resort to other means in doing it, but I think things are in order to make that decision. I know money has to be tight, but please see someone outside of normal channels.

 

[Nancy]

No, it doesn't make any sense at all. I am furious for you. You need to get a second opinion asap. Heart conditions know no age level. There are quite a few on this board that are a lot younger than you are and have very serious heart problems.

A PA can be good, but I don't think you were treated well at all with this one. You need expert care.

Let's see, you have dizziness, shortness of breath and chest pain. What does the PA think is causing your problems, anyway?

You need to start the journal that I mentioned in another post, right away, and present it to the next doctor you see. Please get a second opinion, please get a second opinion, please get a second opinion. If it turns out to not be heart problems, you need to get a correct diagnosis.

You were not treated well, at all.

Here is a link that discusses the various forms of valve disease and the symptoms.

http://www.tmc.edu/thi/valvetype.html

 

[Creed3]

Hi!
I agree with everyone else. I had a similar problem as well. I am 34 years old and the docs I saw didn't really take my situation too seriously because of my young age. They knew I had a moderate to severe aortic insufficiency. I finally went for a third opinion out of state and low and behold, there was more going on than the insufficiency. I was sent straight to Cleveland for surgery. Moral of this story, get another opinion and keep getting opinions until you find a cardio that answers all of your questions and takes you seriously. Please keep us all informed on how things go.

Take Care!
Gail

 

[MelissaM]

What?!? They didn't think those symptoms were related to heart disease?? Oh. My. Gosh.

Maybe they are from the Planet of the Apes, where eating too many bananas cause those symptoms. SO GLAD you are getting a second opinion. If you can, try to get a cardiologist who specializes in valvular disorders.

Also glad to hear your hubby was able to go with you.

Melissa

 

[Marty]

Echo results?

Echo results?

I would like to know what your echocardiogram showed, particularly the diameter of the left atrium and the ejection fraction.

 

[MelissaM]

Marty,

That's a good question. Nicole, I would strongly recommend getting copies of your medical records, test results, etc. This not only helps you learn about your disease, but it helps you realize where you are on the spectrum (which can be comforting). There is plenty of information on this forum and elsewhere to help you decipher your records. Just be careful when presenting your "findings" to the docs - I have found them to be sensitive about patients reading/interpreting their own documents - they think we should know nothing. Defer to their knowledge and ask to "confirm" your thinking rather than spilling your knowledge out as fact (learned that one the hard way. .. ).

When I went to see the surgeon, he thought I was doing well, until I produced the copy of a report that he hadn't yet seen and pointed a number that was off the charts. Changed his whole outlook. In short, knowledge = power.

With the new HIPPA rules in place, getting medical records is easier than ever. good luck!

Melissa

 

[Marty]

Neurotic?

Neurotic?

Good advice from Mellissa, Nicole. I would also like to note that experienced cardiologists and family docs know that a lot of symptoms from mitral valve prolapse and mitral regurg are often labeled as "neurotic". I had symptoms dating back many years that I was ashamed to tell anybody about they were so "neurotic".
Strange, now that my valve has been fixed I don't have them any more. So get your records and look for an older wiser doc and try to learn everything you can about the mitral valve.

 

[Guest]

You Go, Girl!

You Go, Girl!

Nicole,

Most definitely, get a second opinion as everyone else had said.

You are the best judge of how you are feeling and it sound like you have some things that are going on that just are not right!

I've had my share of doctors (like many friends here) that just don't listen and think that just because you're young that you can't possibly have any heart related problems...

Hang in there and keep looking for answers. I will pray that your next doctor is much more compasionate!

Julia

 

[EVELYN]

Nicole

GET A SECOND OPINION!!!! GET A SECOND OPINION!!!!! GET A SECOND OPINION!!!! WITHOUT A DOUBT, GET A SECOND OPINION!!!!

Your symptoms are your symptoms and should not be treated lightly. While NO ONE wants to undergo this type of sugery, IT'S YOUR LIFE, GIRLFRIEND!!!

Evelyn

PS.....GET A SECOND OPINION!!!

 

[Birky]

2nd opinion

2nd opinion

I was 34 when diagnosed and had the replacement at 55. When I found out in December that it had to be done, I was surprised but not surprised. I had many of the symptoms that you are describing which are all gone now. I can't believe that I had felt so bad for long a time. My Cardiologist wanted me to wait until this summer to have it done since he said that I was on the bubble. My husband and I insisted that we talk to the surgeon and go from there. Surgeon agreed that it should be done. He said 90% that they could repair. It was too bad for that so he put in a mechanical valve. If it would have been done 10 years ago, I would have had a better chance of repair. When I saw the Cardiologist for a follow-up after the surgery, he said that he was wrong and I was right. He kept telling me that the fatigue etc. was not from the valve. Now he knows better. Stick to your guns since you know how you feel. Good luck,


Mitral valve replacement 02/27/03
Peoria, IL
Dr. Dale Geiss
St. Jude

 

[Jessica_B.]

It drives me raging mad when this happens, like your age is the sole explanation to how bad your heart condition can manifest itself. I might be one of those people that have had too much trouble thrown at me at a much too young age but anyway. I just turned 27 the other week. I had myocarditis and endocarditis at age 18, required MVR and AVR a year apart, in 2000 and 2001 before cardiomyopathy completely destroyed my heart. When I had the mitral valve replaced I had gotten pretty used to the symtoms and the improvement and absence of fatigue, shortness of breath etc., just blew me away. I have been taken out for a run for my money many MANY MANY times because of my age, even with a very definate diagnosis I am still told that oh, you look much too young for a heart condition! And still, my heart was shot and I did get a new one and still I am met with some disbelief. You a heart patient?!

Like all the other people have said, get a second opinion. If I could require MVR and later AVR due to valvular disease at age 24 and not yet 25 you could certainly join these ranks at 29. You deserve better so go after them!

Best of luck!

/jess

 

[NancyMVP]

Hi Nicole,
Hope things are going better for you.
I found out in October of 2000 that my mitral valve prolapse got worse. I had moderate to severe regurgitation at that time. I had a TEE along with an echo cardiogram. They said I was fine go home and take a baby aspirin. I wasn't feeling great. I did get another opinion and was given atenonol and accupril. Which if your blood pressure is already low I don't think you'd be able to take.
I've been having echos every 6 to 9 months. I just had one after a year. I switched doctors and he felt an echo once a year was good. Although he says call me tomorrow if your short of breath. He means when taking a simple walk. I can do the threadmill ok at the gym. Not like after I just carried laundry up two flights.

When he got the results of my echo. He said everything is the same. See you in 6 months. I requested a copy of the report. Everything is the same but now I have Severe Regurgitation. (The doctor left that out).

I've been told they look at your ejecton fraction. <60 is not a good sign and mine is 65.
Also they look at the size of the left atriium when empty when that increases to 4.5 cm that is another sign for surgery.
Mine is still in the ok range. Although its slightly dilated.
Did they give you a copy of the echo?

I've known I've had a heart murrmur since I was a child. I am 43 and have 3 sons 20, 17 and 13.