Enlarged Heart at 39 years due to leaky valve

[TSellers]

Several weeks ago I was told during a standard Echo that the time has come to possible repair my leaky valve as it appeared 'Severe' ... I was then scheduled for an Esophogus Echo and the report indicated only 'Moderate' leakage.   Last week I had an MRI ... the report showed Enlarged Heart with fluid on lungs and still a 'Moderage' leak.  
My cardiologist says his mind is made up for surgery but he has inclunclusive reports, he recommended I see a valve specialist, over the phone, this doctor said I needed a Stress test Echo (on treadmill) in lieu of just at rest ... so ... I will have the stress test Tuesday after Labor Day and 'go from there'  ... but I am so worried.  My question is how safe is it to walk around with an enlarged heart and is it getting worse the more I wait.   All my cardiologist did was put me on a diuretic for the fluid and said I"ll see ya next week.     This has been nearly 4 weeks of being in limbo.

My symptoms are slight shortness of breath and just feeling tired ... I feel a little squeezing in my chest but just attribute it to the Mitral valve.    Any advice on getting throught the next few days, I am 39 with 2 kids, very worried.
thank you.
TR

[TSellers]

Hi, thanks for the comments.   I went today and had a stress echo ... Moderate - moderately/severe is how it looked today.   Had my husband with me and the Doctor put in the tape of the Echo from 4 weeks ago when he diagnosed the Mitral valve with a Severe leak ... said it was significant leakage ... lots of blue color.    Well, he said he needs "another brain" on this and is setting me up an appointment to see another Doc (the surgeon from Vanderbilt) ... he gave me a tape of today's Echo ... he will make a copy of the 'Severe' echo and send my TEE and MRI to this other doctor to review.   It is all still confusing.   Cant explain the slight enlarged heart and fluid on lungs ... guess this saga continues ... but I felt relieved for him to say it 'doesn't look so bad today'.    I will say since that initial Echo of Severe I cut out all caffeine and have literally been doing nothing ... didnt even want to vacuum the house ... perhaps this made it better??  
thanks again for listening!
Tonia

[Cleveland Clinic]

Actually the valve expert is correct, because while you may only have moderate MR at rest, with exertion it may become much worse. If it does so, or if the pulmonary pressures rise with exercise, then the diagnosis of severe MR is made and then because of your symptoms you may proceed to mitral valve repair ( hopefully). I hope that you at a center of excellence which repairs most mitral valves and replaces only the few it cannot repair.  This process can take a few weeks and genrally patients do well waiting for surgery. In your case the chest pain may not be related to the valve at all, and may be related to coronary atherosclerosis. Have you had a stress test ( nuclear or otherwise) looking for ischemia?

[offwego]

Don't panic, you will be fine. You probably will need surgery to repair or replace the valve. But you will feel night and day better. I would only have the surgery at a major hospital such as NYU, Cleveland Clinic and so forth with a very experienced valve repair specialist.

I know it's scary. I had my valve repaired 5 years ago. Once you get past the shock and fear  and have a plan of action, things will settle down.

Best of luck and try not to worry too much

[gussy202]

You know they (cardiac surgeons) can do a surgery for valve replacement without the need for open heart surgery.  There is a wonderful new procedure where they make tiny incisions in the chest(sort of like laparoscopy) I don't know much about that since the technology has been more advanced since I had my last surgery in 1986.  

I still think the doctors will do a cardiac cath since this is the procedure which will give the best information about your valve.

Recovery from procedure takes a little while something like 4-8 wks.  You will feel much stronger and healthier once your valve is repaired or replaced. You should only do things that you can tolerate at home.  Sometimes steps, lifting heavy things will put added stress to your heart since it's not pumping properly at this point in time.  You should be able to know your limitations.  If something doesn't feel right don't do it.  

I'm sure that no matter what you'll receive good care and be on the road to a smashing recovery.  Best of luck to you.

[TSellers]

Thanks, you are kind and obviously experienced in this, glad to hear you are doing well now.   Do you still feel limited to activities ... out of breath, etc ... or is it a big difference.

I have not had a cath yet.   No surgery is scheduled yet, I guess we are waiting for this next stress test coming Tuesday  ... the problem seems to be that one report showed Severe and then the others did not ... I feel good that he is being very thorough, my cardiologis is not the surgeon so he will send me on to  Dr Petracek (at Vanderbilt) after this next test ... he says this surgeon is doing the non-invasive surgery and will look at my case.  I am mostly worried about the fact that I have an enlarged heart, he didnt tell me to limit activities or anything but I feel scared to even vacuum, haha.  Lots of uncertainty and I like my doc but he is not very detailed and of couse I failed to ask enough questions.

thank you again for your comments.  Best to you.

[gussy202]

I was wondering if the doctor ever did a cardiac cath...this is the "gold standard."  When I had my first mitral valve replaced I became very symptomatic such as yourself.  I think it would be a good idea to discuss this with your doctor.  Any time I had heart surgery, I always had a preliminary cardiac cath.  The heart can take a lot of abuse; so hang in there and get the cath.  I'm sure if you were in heart failure, you would have been admitted immediately.  Best of luck to you.