what do i do from here?

[Robin]

Hi. Thanks for taking your time for me. I am 46 having had TOF repair when I was 14 years old (1968). Having many pvc's now, fusion beats, 3-beat runs, on and off and fainted twice in last month, and continue to have SOB upon walking stairs, hills, etc. MD's are not sure if fainting was vaso-vegal or from irregular beats. Last echo done showed mild pulmonary hypertension, bicuspid aortic valve, redundant mitral valve, moderate triscupid regurgitation, aortic insuffiency, mild-moderate mitral regurg., no vsd evidence, mildly decreased systolic function, dilated right ventricle, global hypokinesis moderate. After exercise, the pulmonary artery systolic pressures rises to 54mm hg. Before exercise it is 34 mm hg.
Am on Calan 180, potassium, HCTZ daily.

Current MD is suggesting regular cath and electrophys. cath, both and possibly tilt table test. They both think adult congenital heart care is a new subspecialty and needs specialists in that realm.  (where are the specialists?!)I am hesitant to partake in any invasive procedure at this time unless it is absolutely necessary.
Would really appreciate some advice. What is going on here? What does it matter that the pressure rises AFTER exercise?
Sorry so long but thanks for whatever help you can give.
Robin
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[CCF CARDIO MD - DLB]

Happy holidays to you also.

[curious]

thank you, i learned something new today! happy holidays!  curious

[CCF CARDIO MD - DLB]

In general PVCs are not a big deal. In people with TOF, even after reapir, the incidence of dangerous arrhythmias is quite high. This is a fact not known to all adult cardiologists.
Elevated pulmonary pressures that increase further with exercise can lead to conditions such as fainting; yours are not quite high enough where I would expect fainting to occur. The throbbing could be from the tricuspid valve leaking.

[CCF CARDIO MD - DLB]

Not at all a dumb question. TOF stands for Tetrology of Fallot, a serious congenital heart disorder that usually requires surgical repair.

[curious]

at the risk of sounding like a dummy, what is tof? i have not heard of this before.. thanks  just curious

[Robin]

Thank you very much for answering so promptly! I will seek the specialists you advise. It's funny because the card. who's been following me for the past 10 years has always said the pvc's are not a danger. Now my internist said not to bury our heads in the sand and to be more aggressive - and had ordered the new stress/echo with these more recent findings.
Is there any concern about the rise in pulmonary pressure after exercise? And one more question please (so sorry).For the past year my neck always feels "full" and throbbing; cannot tolerate turtle-neck shirts or close fitting to neck tops. When I sleep, I have feeling of being strangled when laying neck on pillow! Any slight exercise makes neck/throat throb!! Any connection with all of this?

Thanks for being so objective. You've been a big help. Happy holidays.
Robin
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[CCF CARDIO MD - DLB]

I agree with your cardiologists - you should be under the close care of a congential heart disease specialist. We have excellent cardiologists that specialize in that area (actually a whole group of doctors). While there are not that many specialists in this area, most large medical centers have at least one. Patients with TOF are at high risk of having dangerous arrhythmias. Evaluation by a cardiac electrophysiologist (and possibly both tilt table testing and EP study) is important.