Phyllis's Journal

Rose Madura  Hi Phyllis....Unsure but there are some clinical trials going on I believe at Northwestern in Chicao.  Have you googled it?

Kimberly Eisenhut  Northwestern will only consider if you are severe enough. I tried getting into a study about 5 years ago and was denied. Maybe we can work together to see what else is out there. Believe me, I did the same thing you are doing when I was diagnosed. We really need to start getting in touch with the American Heart Association and advocate for Tricuspid surgeries to be prioritized also and not only wait until severity is worse. I do know it is weighed with outcomes also, but the hospitals and doctors seem to be going by AHA gudelines, and I often wonder if it has something to do with insurance. I have asked point blank, and been told it does not, but I still wonder.

Kimberly Eisenhut  Also, Phyllis, if you want to, you can get in touch with Dr. McArthys office at Northwestern through the Dr. portal on this site and ask them to give you a call. They usually get back to you within a day.

Rita Savelis  Which "procedure" are you asking about? I had my tricuspid repaired during open heart surgery at the same time that my aortic and mitral valves were replaced (in 2015).

Miriam St.Clair  There are some transcatheter approaches that I believe are still investigational in the US but may have already been approved.

Phyllis Burch  I've been told by my cardiologist that tricuspid surgery is rarely done by itself because it's very risky.  My other valves are ok, but my tricuspid valve is moderately regurgitating which can change the shape of your right heart.  I was talking about the transcatheter approaches that have been approved in Europe but not in the U.S.

Kimberly Eisenhut  Phyllis, I have same thing and was diagnosed in 2016. I've been told by Dr. Malaisrie at Northwestern in Chicago that he can, when it is time, do a mini thoracotomy.Here is a link to an article I found;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494419/

Kimberly Eisenhut  Oh sorry, it does say at time of mitral valve. I still think it does not make a difference, as if they can do it when doing other valves, why cant they do it for just the tricuspid?

Kimberly Eisenhut  I read entire paper again, and it is for isolated tricuspid also, so yes, it can be done for only tricuspid. This was a paper done by Mt Sanai in Florida.

Phyllis Burch  Thank you for the information.  I believe the tricuspid regurgitation has to be severe prior to surgery.  I’m currently moderate which is also a problem.  I wish surgery could be performed earlier to prevent more heart damage.

Kimberly Eisenhut  I agree, I keep asking cardiologist why wait, as even Dr. McArthy has said in his videos that earlier is better, but I guess they have to go by heart association guidelines. Also, it is, for some reason more risky than other valves. Does not make sense to me because other people have it done along with other valves all the time. Confusing and stressful, but just have to take it a day at a time I guess :)

Rita Savelis  I'm really sorry to hear about your tricuspid problems, but I personally wouldn't rush into any kind of heart surgery. A cardiac surgeon would be better placed to answer your questions and advise you as a surgeon knows more about surgery than a cardiologist does. When I was sent to speak to a surgeon, I became very aware of this. But we didn't rush into surgery. Take care.

Kimberly Eisenhut  Rita, that is exactly what Dr. Malasrie and Dr. Rioglin have told me. It is not something you want to do if it is not the appropriate time. The risks need to be minimalized and Dr. Malaisrie also said you could end up with more problems than before you went in, so rushing it is not wise. It is just hard to wait until something is severe, that is where controlling the fear comes in. Living one day at a time, and trusting in the Dr and surgoen are difficult, but necessary. I am just so grateful for this site and having others who understand makes all the difference for me. My family does not even talk to me about any of it. Not sure if it is too hard for them or what, but I've stopped trying to understand why they cannot discuss any of it with me. I just put a smile on my face and plow through for my teenage son and pray everything works out. Happy Sunday to everyone, and love and hugs to all!