tricuspid regurgitation

[Letsallhope1]

During my last echo it has been noted that my tricuspid has moderate to severe regurgitation but with my surprise the cardiologist is not suggesting any intervention.

I must say I’ve got congenital heart disease with many open heart surgeries on my shoulders, heart failure, a tons of meds prescribed and to be fair, all considering, not doing too bad.

Is it normal that cardiologists at this point no longer suggest intervention? My thought is that at this point another surgery could possibly too dangerous?

It is sad but I feel that we are just waiting for the slow but inevitable end.

I’d like to hear your opinion/experience on this matter.

[Yumz199725]

Hi letsallhope1, yeah seems they like to leave you till your literally on your last legs well it's seems that way I don't know how it's works any more. I do know that they prefer to do surgery when your having symptoms aswell as the moderate to severe regurgitation. I have moderate to severe AR and AS and they said eventually I will need surgery. Sounds like you have been through alot though and your still going which is amazing! I also have congenital heart disease you can find out more in my bio if you want. Hope your not left waiting to long.

Take care ♥️

[Letsallhope1 in reply to Yumz199725]

thanks for your message!

I will check up your profile, thanks 😉

Yes! Apparently I’ve been for years one of those unexplainable miracle, had so much done to me and apparently been feeling and coping so much better than their prediction.

Only the last couple of years I’ve been slowing down quite a bit and starting to have physical symptoms like slight swelling of my calves and breathlessness on exercise.

Take care of yourself

[Yumz199725 in reply to Letsallhope1]

Sounds like your definitely having symptoms and what they would consider red flag symptoms I'm confused as to why they haven't done anything have you had a stress test? Are you awaiting futher tests. Have they said why they not going to intervine yet, sorry to hound you with questions just curious as to why they just leaving you like this 😞.

I'm trying my best aswell like I said I will eventually need valve replacement surgery and just lately been getting more short of breath so I'm gona be having an MRI, stress test and holter monitor to see if it's anything to be concerned about I have definitely done better then they predicted it feels amazing when that happens don't it ❤️😁

Take care and please update us if they do decide to operate.

[Letsallhope1 in reply to Yumz199725]

I just think they won’t operate because I’m already on stage 3 heart failure, I’ve started the preliminary tests for heart transplant too, this is why I don’t think they consider surgery.

In any case I will definitely ask for their reasoning behind it at my next cardiology appointment in July.

One last question: how often do you get your routine check-up? Yearly or more often?

[Yumz199725 in reply to Letsallhope1]

Yeah your probably right, yeah that's a good idea ask them why. Erm it's usually every year but sometimes can be every 6 months depending on how I'm feeling had telephone appointment in November then I emailed said how I had been feeling and they gave me face to face appointment on the 17th of this month.

[10gingercats]

I have had severe tricuspid regurg. for many years. Now in my 80's I have congenital heart disease, enlarged heart and God knows what else. The tricuspid regurg is now severe but my cardiol. is not too worried.Apparently they are not too keen to fix clips as they are not always a successful solution. I have seen a specialist for an assessment . They will only want to try a fix if they are doing another heart op. Tricuspid surgery is rarely done alone, so I am told.I am pretty active,out every day , no breathlessness but I have a not too bothersome Afib.

[Letsallhope1 in reply to 10gingercats]

thanks for taking the time of relying, your message really helped me to be more relaxed about the whole tricuspid thing.

I’m followed by a fantastic cardiac team at the Royal Brompton so I guess they know what they’re doing. It after the pandemic I feel as even them are struggling a bit and feel a bit “forgotten” sometimes.

It is amazing that you’re 80 and still going strong by the sound of it! I see turning 50 next month already a milestone.

All the best!

[Hidden]

Very interesting your post. I have tricuspid regurgitation. Now I will try not to bore you but from what I can gather my epsteins anomly is basically the tricuspid valve was manufactured and put too low down so my right atrium also uses part of the right ventrical so it takes alot of volume. There is leakage through the tricuspid due to the fact the valve leaflets have not formed correctly at birth. On an echo it was mild on an mri it is severe. At present the issue is stable. May have been stable for many years. Only found out last year so it has still been a shock. However I don't have heart failure so I will be managed on medication to slow down the possibility of heart failure. There is a slight right to left shunt, again this is from birth. But not very obvious, but the problem Is that the right atrium which Is now larger has more pressure so I have to ensure my blood pressure is lower and my arteries are relaxed, hence the ace inhibitors, I think they will not touch mine because the left side of heart is fine. It is all a worry. However my ef for left side is 51%. The ef for right side is 22%. You have got to trust the experts. And I have had many test over the last 12 months and they are happy to manage it. I have now got to except that and move forward mentally. Good luck for the future

[Letsallhope1 in reply to Hidden]

oh dear..so many different cases! I think you’re right, got to trust the experts! In my case the same team who has kept me alive for the past 23 years!!

Thanks for the wishes and same to you!

PS sadly I’m on heart failure and although I’m managing surprisingly well thanks to a cocktail of good meds, they have started the heart transplant talk with me.

All the best!

[Hidden in reply to Letsallhope1]

Yes I might be lucky but one of my letters which was from Barts was to refer for heart transplant! Any way that might be down the road but still a shock to read but no one mentioned it? So wether I should have seen letter I don't know? That's the trouble with being able to see your records on line. I think that has taken me to another planet anxiously. But hopefully I can keep heart failure at a distance. But it is all still a worry. It is so unfair that we where born with a problem which we didn't ask for. But that's unfortunately the reality and the cards that where delt. But fortunately the medical side does move on and new treatments are being found, but the mental pain that's hard.

[Letsallhope1 in reply to Hidden]

I’m sorry you had to find out that heart transplant is in the cards for you by reading it on a letter, I sort of guessed in the past couple of years because the general state of my heart is deteriorating but at least I had my cardiac nurse approaching me and have “the talk” with me.

I truly wish you the best!

[Hidden in reply to Letsallhope1]

Thank you. A journey I don't wish on anyone.

[Anon2023]

hi. I had moderate triscupid valve regurgitation which they weren’t worried about but fixed when I was having mitral valve surgery. I was told that they wouldn’t have bothered if not for the fact that I was having other surgery. I think they like to leave surgery until it’s the last resort and manage with meds if they can. Best wishes.

[Letsallhope1 in reply to Anon2023]

thanks a lot for the reply, really helps me putting everything into prospective and relax

[Alessa_]

Hi letsallhope1, in my experience, I was told that the heart can remain stable with moderate to severe TR for some time. I had the same diagnosed following a complication during ablation where the tricuspid was torn. I was monitored for 4 years and then the heart began showing signs of stress and became enlarged. Then I had my valve replacementWatching and waiting bought me time to get my head around it all and it may never have needed doing so they wait to not put us through unnecessary surgeries.

Hope that helps

[Hidden in reply to Alessa_]

I agree with that, I think the heart, as long as it is stable then they don't want to do unnecessary operations. The sad thing is the right side of the heart is what they class the forgotten side. Fortunatly they are now looking at the right side for new medications and treatments for the future.

[Letsallhope1 in reply to Alessa_]

thanks Alessa, your message helped me and it all makes sense.

All the best to you too!

[spinningjenny]

I had mitral and tricuspid valves repaired four years ago. I very much got the impression that they only did the tricuspid because they were sorting out my mitral valve. They wouldn’t have bothered otherwise xx

[Hidden in reply to spinningjenny]

You are right they only want to do the tricuspid valve if they have something else to do. Possibly if my issue had been found at birth then something may have been done, or if I had problems at a younger age.

[Maydayuk]

I have moderate regurgitation in a bicuspid valve. They tell me my valve is still moderate over 5 years. The longer they can leave intervention the better. I was told obviously at some point my valve will need surgery and I need to be reviewed annually. I had a echo last year. I have palpatations, I don't sleep. I take quite a few meds. Just a case of taking care of yourself and noticing any changes eg tiredness, breathing etc.

[Maydayuk in reply to Maydayuk]

1 year on my bicuspid aortic valve still moderate regurgitation but a recent echo shows mod to severe stenosis of my aortic valve. Don't know yet if I'm closer to my valve replacement. Letter says arranging a clinic review.