Palpitations Increasing

[ALucy]

My 16 year old son has severe Tricuspid Regurgitation, and a slightly enlarged heart due to this. He is however incredibly fit so the surgeons have decided not to operate at the moment. That said, his palpitations are increasing daily both on exercise and just walking up the stairs. He’s due another review in February. Not sure if we should be concerned before that? It has really knocked his confidence recently.

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Can't you ask for 2nd opinion? X

[ClockWorkValve]

Hello ALucy!

I'm really sorry to hear about your son's condition. Being a parent myself I can relate to what you are going through, and hope for the best possible outcome. I came across your post while looking for information on Severe Tricuspid Regurgitation, as I have the condition myself as well. I am also fit, I used to have a minor congenital TR, which progressed to severe last year (diagnosed late '19). This condition is such a confusing mess! I don't have any major symptoms besides palpitations, which apparently are something I shouldn't worry about at the moment, according to my doctor. I also have enlarged RV (right ventricle), I think it's borderline severe as well. From what I've read, waiting for symptoms to appear can be tricky. A badly damaged valve might be irreparable and need replacement, which has worst outcomes. Same goes for RV dilation; if one waits too long, it might also enlarge beyond the heart's capability to heal.

Your son has his whole life ahead of him, I really wish you find the best possible course of treatment. Given that surgical repair is probably inevitable (at least in my case), I'm trying to find a surgeon (or clinic) that specializes, or at least has decent experience, in doing TV repair, and I have to admit I'm having a hard time. While there are many surgeons specialized in mitral or aortic valves, there aren't any for tricuspid valves. At least that's what I've gathered so far. Please, I'd be very happy if you could share more of your experience with me. Congenital severe TR doesn't seem to be a very common occurrence, I haven't been able to find other people who are also facing it.

[ALucy in reply to ClockWorkValve]

Thank you so much for your reply, I agree it seems to be quite rare as a stand alone condition.

Things changed for my son quite a big at the beginning of the year and the decision was made to operate following his review in February. His capacity to do as much as he was reduced significantly and he was getting more out of breath.

He was due to see the surgeon in March but was cancelled as just before the UK lockdown.

I made contact with the team in late April as he had a nasty dizzy spell, then things progressed from there and he had surgery at the beginning of June.

Sadly the initial surgery wasn’t as successful as they’d hoped, so he went back in two days later (a total of about 12 hours in theatre). They did manage a repair though. His heart is in a slightly strange position so made access much harder.

He spent 5 days in PICU and then home after another 5 days. He has healed remarkably and yes still needs to build fitness but has started college this past week and most people don’t have a clue what he’s been through.

Additionally he was diagnosed diabetic 2 weeks post surgery so has had a lot to deal with!

He still has a small/moderate leak but they are hoping it won’t get any worse for many years. He had a plastic ring repair but isn’t on any meds. Long may that continue.

Hope that helps a little... xx

[ClockWorkValve in reply to ALucy]

Hi ALucy!

Thanks for the quick reply. I think the choice to proceed with the surgery was the best. The circumstances were not the most favorable (and still remain like that), with the lockdown and all the disruption it has caused, and I feel it must have been a very difficult ordeal for your family. Especially when you realized that your son had to go to surgery again after two days. I'm so glad he is doing good now, getting back to his everyday activities and gradually building his strength. Twelve hours in the theater is a lot, and probably a lot of this time was also spend on heart-lung bypass which is certainly risky. He is a young man, and I'm sure he will heal very well. The fact that he's not on medication is also very good.

How did you choose a surgeon? Did your practitioner help you find someone experienced in TV repair? I think perhaps that's the most viable option.

I'm sad to hear about the diabetes.As if you didn't have enough on your plate already. I wish you the best of luck, managing all that. When I was 18, before my valve regurgitation was serious (it was actually small to moderate back then), I suffered a stroke. Fortunately I got over it quickly and well, mainly because the area of the brain it affected (upper part of the cerebellum) has an amazing capacity to heal and redistribute its functions. It was then, when I discovered I had an open PFO in my heart, which can create dangerous blood clots. It might have also contributed to the gradual degeneration of my TV.

Again, I wish you the best of luck!