17 year old with tricuspid regurgitation

[17yeartricuspid]

Hi I am new to these forums and have a few questions, I have had tricuspid incompetence (leaky valve) since I was a baby and have been monitored since.. Up until recently it has turned worse and is now severe regurgitation, so I will need an operation soon to replace the tricuspid valve, but I do have a few questions.
1. I have read on this forum that because it is a tricuspid valve I can not have a mechanical valve, I would prefer to have a mechanical one so I won't have to have another operation for a long time, but my cardiologist has said I can have a mechanical one, I presume that if he says it that it is correct but who knows..

2. How do you know when your ready for surgery? ( I keep having dizzy moments and my heart is beating very quick, and I sometimes get out of breath, & sometimes have a dull ache in my chest)

Thanks for your responses
Alex

 

[Debbrn]

Welcome. This must be a very overwhelming time for you. I was born with a moderately complex heart defect. Over the long-term it has caused my tricuspid valve to become very leaky. I have had it repaired twice while having my pulmonary valve replaced. It is true that for the pulmonary and tricuspid valves that a tissue valve is overwhelmingly preferred. There is no magic time to replace the valve. Part of it depends on how aggressive the medical team and the patient want to be. Just like having a mechanical valve with coumadin is not the end of the world, having a tissue valve put in with future replacements is not the end of the world either. My first pulmonary valve lasted 19 years and I am hoping to get multiple years out of my current valve. Not all valves last 19 years and others last longer. I'm sure others will chime in that have more experience the the tricuspid valve.

 

[kfay]

Alex, have you been told your condition has a name? The most common (although it is rare) congenital problem with the tricuspid valve is Ebstein's Anomaly, which also has a pretty good likelihood of fast arrythmias. I have this condition and have had 2 surgeries since I was diagnosed at birth. If this is what you have, there is a great group in the UK on the internet for it. I'd be happy to pass that info along to you.

Obviously you've already read on here about the issues with a mechanical valve on the right side of your heart. Because the pressures are lower (and if you do have EA, there is the added problem of the right ventricle not functioning properly), the chances of forming a clot on that side is higher than if you have a mechanical on the left side of heart. Tissue valves do last longer on the right side of your heart, so the chances of you needing a replacement soon, compared to if it were on the left side, are lower. Again, I'm happy for you to come look at our FB group for EA patients. There are several people in their 30's who got their tissue valves in their teens who are just now needing them replaced. Another thing for you to consider is finding a surgeon in the UK (I know there are a few), who could possibly repair your valve instead of replacing it. There is a procedure called the cone procedure, specifically developed for EA tricuspid valve repairs, that you should look into to see if it would work for you. That would be the best of best, but if you go that route, it is important that you reach out to one of the few surgeon's there who have learned from the two surgeon's in the US who do it. One of those surgeons, Dr. Del Nido, was just brought over to Scotland this past week to perform the cone on a young girl and to teach the surgeon in Scotland the technique. I could put you in touch with a couple of people who live there whose children have had the procedure done in England.

I'm happy to answer any questions I can for you. Please feel free to pm me with anything I can help with.

Kim

 

[17yeartricuspid]

thanks for your response and strangely enough i am not really overwhelmed as such as i personally know dozens of people who have had valve replacements and are still alive, but yeah it is a bit of a bump in the road isnt it.
ill do what ever is best when the time comes
thanks,
alex

 

[17yeartricuspid]

on my last hospital letter it says i have:
1. Dysplastic tricuspid valve - ebsteinoid
2. severe tricuspid regurgitation

because i have this dysplastic valve also do i need another operation to fix that?
sorry about my knowledge on the subject not being that good.. i have only really started looking into the problem i have.
thanks
alex

 

[kfay]

Alex, I take it from that letter that you do have Ebstein's. I would really encourage you and your parents to research your condition and understand it. Like I mentioned above, there is a surgery called the cone technique that is a repair of your tricuspid valve. If you qualify for it, it would be a great thing for you to have at your young age. There is a surgeon named Victor Tsang at Great Ormond Street who has done about 35 of them or so and was trained by the drs. here in the states who have the most experience with the cone. I would also encourage you to ask your dr about your rapid heart rates. There is another issue that I think about 50% of the people with EA have called Wolff Parkinson White syndrome which causes rapid heart rates, sometimes over 300 beats per minute. This can be controlled with meds or can be taken care of with a procedure called an ablation.

I've had surgery for both of these things, WPW, and a replacement (tissue) of my tricuspid valve. I wasn't a canidate for the cone because my valve was too badly damaged.

Here is the link to our FB group, https://www.facebook.com/groups/EbsteinsAnomalyCongenitalHeartDisease/, please come join (it is a closed group), and here is a group out of England as well, http://www.ebsteins.org/ that you and your parents should also check out.

Let me know if I can help.

Kim