Mitral regurgitation questions

[Guest]

I'm new here. I'm 32 years old, wife, mom and student. I've had 2 cardiac ablations for junctional tachy and Aflutter and one for AFib. Both ablations were pretty successful. I've still had symptoms like shortness of breath, dizziness and fatigue upon exertion, but I can tell that they aren't arrhythmia's. I have symptoms when I ride bikes, walk uphill on a warm day, played softball, push my full cart from Costco In the parking lot, etc. My doctor ordered a stress echo because he thought maybe my mitral regurgitation was worse than he thought. My resting prolapse is 2, and my regurgitation is a 2 as well. EF is 60%. My stress test showed 4 Regurgitation. My cardiologist referred me to a cardio thoracic surgeon for MVR. When I saw the surgeon, he said the stress test results were false, that they were artifacts. They did a TEE which showed exactly what the resting echo showed. They also did a doubutamine stress echo, which I opted to stay awake for because I was skeptical of it and wanted to know how I felt during the test. The doubutamine stress test actually showed slight improvement over the resting echo. The doctor told me that I was "deconditioned" and "had nothing wrong with my heart". He told me to exercise.
I walked away pretty angry. I'm not making this up! I was a college athlete, and still a pretty active adult. I decided to start exercising more regularly though, doctors orders! Nothing changed, other than I felt bad when I exercised and I was left feeling exhausted and disconnected afterwards.

I am getting a 2nd opinion from a better dr at a better hospital, but I do have some questions.

Is there anyone on here with a similar story?

Does your regurgitation get significantly worse with exercise?

Are your symptoms worse in warm/hot weather? Also when drinking alcohol?

Has anyone had a similar experience with a doubutamine stress echo?

My mom died suddenly at 28. She had MVP, but they said that she died of endocarditis. I think that there is some sort of genetic link to her side of the family because several have died relatively young due to their hearts when they were otherwise healthy. One brother lived, but now gas a heart transplant. So for me, I don't want to go into to heart failure or die suddenly, I'm going to school to be a nurse, I don't want to be a patient.

 

[dornole]

I have moderate-severe mitral regurgitation, not sure what that is as a number - I think 3+. I've never had a stress test so I can't answer if the regurgitation gets worse on exercise. To me, getting dizzy from pushing a costco cart is pretty restrictive. I think you're right to seek another opinion.

I would emphasize your family history. I'm sorry about your mom, that is very rough for you to have gone through. Try to find out as much as you can about your other relatives as well and their issues that sound like they could be some kind of "acute" problem, maybe distinct from your prolapse/regurgitation issue. My mitral regurgitation really is not a sudden death risk at all. Congestive heart failure, which I had before my valvuloplasty, was also not a sudden /acute thing, but progressive. I just think, make sure you don't still have another issue besides the regurgitation. You already had the arrhythmia issues, so I'd just be concerned if the cardiologist is focusing too much on the regurg number.

FYI re: exercise - I do find I progress VERY slowly since developing the regurgitation. Like, .1 mph increase on the treadmill in 8 weeks. Not college athlete kind of workouts. So, if you don't get anywhere with your second opinion or treatment options and want to see if you can improve your aerobic capacity via exercise, you might need to learn to exercise like a heart patient. I got tested for my aerobic and anaerobic thresholds, got an 8 week interval workout (about 30 minutes 3x a week) and I just keep repeating that, slowly upping the workload as I am able to still stay in my target zones. It is very slow but I AM improving. I am definitely working but I feel fine when I exercise this way. I also do strength. If I try to do long aerobic workouts like biking I feel horrible. I'm 45 by the way.

It's definitely annoying to feel like you're being accused of something. Once time when I had pneumonia, I was having a really hard time putting my arms over my head and holding my breath for my chest Xray without spasming into coughing. The nurse told me I needed to get into shape. Are you serious, I had a 104 fever and pneumonia! So do find somebody you trust both to assess the total picture of what may be wrong and if they still think it's just conditioning, someone to give you enough structure and guidance around "how" to work on that.

 

[Mommy2TnL]

Dornole, thank you for your advice, especially in regards to exercising! I need to start doing something again, but we live in the foothills, so the inclines can leave me feeling pretty bad afterwards.....I think an exercise bike is my future!

I spoke with the PA who was reviewing my file before passing it onto the surgeon. She thinks another stress echo will most likely be done. I'm 100% on board with that idea! I need proof that the first exercise stress echo was either accurate or false, before I proceed with anything. They are also going to set up an appointment with the marfans clinic while I'm down for the test. I've been asked if I had marfans syndrome by a couple cardiologists, but none of them looked into it. I don't necessarily think I have it, but I think I'm borderline and might have a similar CTD. I would like to know for my kids.

 

[Nupur]

I have almost severe MR and yes I have all those symptoms. My exercise tolerance has gone down significantly in the last two years.