29 yr old w/ dilated cardiomyopathy/ CHF

I was wondering if there was anyone out there who would be willing to give me some professional advice and or guidance because im not exactly sure what to do at this point.  Here's a lil history..@ 19 diagnosed with Inappropriate sinus tachycardia and mitral valve prolapse.  Had 2 cardiac catheter ablations. Was good for awhile but then in 08 was diagnosed with pulmonary embolism, multiple pulmonary nodules, and mitral regurgitation and trace amnts coming from tricuspid and pulmonic valves as well. Then prolonged QT, enlarged heart w/ left ventricle dilation, minimal cardiomegaly and now dilated cardiomyopathy with preserved ejection fraction. Latest incident was substantial edema to feet, ankles and calves. Got CT scan and found edema in the lung as well. BNP was slightly elevated at 257. Dr. noted right versus diastolic CHF. What does this mean exactly and God help me, is this extremely rare for someone my age to have all of these problems?? I didnt even name everything still!!  Also, can anyone give me an anticipated prognosis and what i may have to expect in the future.  Things seem to be developing somewhat quickly or at least it seems that way to me.  I would appreciate any helpful input.

[Jonathan D. Rich, MD]

Hello and welcome to the forum.

First, I am very sorry to hear about all that you are going through.

Mitral valve prolapse (MVP) is not an uncommon condition and tends to affect women more so than men.  In many patients, MVP simply needs to be watched for the development of a leaky mitral valve (called mitral regurgitation).  In others, the leakiness will become severe and may require a valve repair (you mentioned that you have mitral regurgitation but did not state the severity).  The general prognosis in MVP however is quite good.  Many patients with MVP may suffer from palpitations (like you describe), often requiring medical treatment (in your case, you even underwent an ablation).

The fact that you are experiencing swelling in the legs and have a mildly elevated BNP suggests the possibility that the pressures in your heart are a bit elevated.   This does not mean that you have a serious condition but rather that it should be evaluated.  You did mention that you had a pulmonary embolism before.  Most of the time, these resolve without further consequences but in some, there can be some residual clot that can put some strain on the right side of your heart.  

I imagine you are seeing a cardiologist for most if not all of these conditions (if not, you should).  I know that all of this must be very frightening for you.  However, all the conditions you describe are quite common and usually quite treatable.  The most important thing is that you receive the proper diagnoses so that you can get the treatment you need and move forward to live a long, productive, and enjoyable life.

Best,

Dr. Rich

[Jessa082]

Thank you for responding back to me.  I do know for a fact that they couldnt rule out a chronic emboli and that i have prominent remodeling.  Does this sound like early stages of CHF or do you still not have enough info to make that assumption? Also, i was just diagnosed with moderate COPD as well.  Will this also have an ill affect on my heart??

[Jonathan D. Rich, MD]

I am not sure why your doctor is unable to rule out chronic thromboembolic disease (ie as a result of your pulm embolism).

Also, how old are you? My sense was that you are a young person (and copd is exceedingly uncommon in young people).

My most important advice for you is to see a quality cardiologist.  He/she should be able to sort all these things out for you and provide you with excellent care.

Good luck.

Dr. Rich

[Jessa082]

I'm only 29!!!  My cardiac problems started when i was 19 so ive been under the care of a cardiologist since then.  I just feel like alot of what he tells me is, he's keeping a close eye on me.  Are my conditions typically just something you watch for progression or do you think i may be a candidate for any preventative or corrective procedures??  Thanks again for your help.

[Jonathan D. Rich, MD]

I am glad that you have been seeing a cardiologist all this time who likely knows you and your medical conditions well.  I suspect that you are likely in good hands.

However, there is never any harm to seeking a 2nd opinion.  In fact, you should not hesiate to do so if you begin to feel uncomfortable or unsure of your diagnoses and the care you are receiving.  Sometimes, simply a fresh perspective from someone new can be helpful.

Wishing you all the best in health and happiness.

Dr. Rich