Joy's Journal

Richard Munson  Thumbs up on not wanting unnecessary surgery. If your car needs valve as well as piston replacement you do them both at the same time, not separate visits.

Kimberly Eisenhut  I agree also. I have tricuspid, moderate to severe, and have been told to wait, that my symptoms are not at point of surgery yet. Maintian with meds, lisinopril and amlodipine besylate for blood pressure. I have been told by Dr. Malaisrie at Northwestern in Chicago, that I would be a candidate for minimally invasive when the time comes. Northwestern does it for tricuspid. Unfortunately, Tricuspid valve is not researched and operated on as much as other valves. I have seen quite a few heart warriors on this site get their tricuspid fixed along with other valves at same time though. If Tricuspid is leaking that much, it does not get better on it's own, I wish! It can be maintianed for a time with meds, but it eventually will have an impact on your heart and become something you will need to address later. Hope you can find a surgeon that will give you what you need and has the best long term outcome for you. 

Joy Snyder  Thanks so much Kimberly. I have a couple of questions.  Did you have mitral valve issues prior to this and have surgery on that valve? Do you know what makes you a candidate for minimally invasive tricuspid options?

Kimberly Eisenhut  I did have some mitral regurgitation also, but it has always been very mild. I have not had any surgery yet. The surgeon did not explain why I was a candidate for minimally invasive though. I think he was just telling me what he thought at the time and it was a video call, so I did not think to ask him why. I would for sure ask that next time I get the chance to speak with him. It is so hard sometimes, especially when it's just me and I do not have another set of ears or someone to advocate for me. You start to feel like they want to get off the phone or you are asking too many questions, but I know I need to be more pushy sometimes. I hope you get some answers and get a second opinion.
Best wishes to you, and please keep us posted

Joy Snyder  Hi Kimberly.  Thanks for the response. It's just me too. I just decided it's my heart and I want a great result so I live a long, vibrant, healthy life.  So I'm pretty pushy.  I should be hearing from Mayo on Monday.  I'll post an update then.  Have a great weekend!

Patsy Stewart  Welcome to the community, Joy! I don't have any answers for your questions, but I was born in Kansas City many moons ago.  A few months back, my NP told me that I needed to get out of town for a second opinion. She suggested either St. Louis or the University of Kansas. I now have insurance that will allow me to do this. I'm hoping to get the information that I need and head your way soon. I'm looking for someone who specializes in late effects of radiation. I'm anxious to read your story once you post it. 

Joy Snyder  Hi Patsy! Let me know if there is anything I can do to help.  I am at KU and I have a dear friend is getting ready for bypass at St Luke's.  I have read that Barnes in St. Louis is excellent.  Best wishes to you.

Deena Z  Hi Joy, welcome!  I have my mitral valve repaired and an annular ring placed on my tricuspid valve.  It's my understanding most surgeons do not want to perform a minimally invasive surgery when two valves need to be repaired, but there probably are some that may do it.   I had to have a sternum incision because of the severe calcification on my mitral valve, but I am so glad that I did, because the surgeon discovered that my tricuspid valve needed a ring.  -- didn't show up on my many echos and TEE.  Just know that if you have a sternum repair that it is not really that painful (hard to believe, I know), but it does take much longer to recover. I know this is not the news you want to here, because minimally invasive is less daunting, yet, it's your life, go for the best! Godspeed. 

Diane Pellowe  Hi Joy, I am three weeks out from mitral valve replacement.  Welcome to this group.  People are so supportive, so ask anything.  I had full open heart and as others mentioned, my surgeon thought it best because he wanted to see precisely what was going in there!  I can tell you that 3 weeks out, my discomfort is controlled by Tylenol, I go out on errands with my spouse,  I eat what I want and life is slow but improving.  Good luck with the TEE!

Adam Pick  Hi, Joy, Here's a video you might want to watch with the patient success story of Leila, a robotic mitral valve repair patient. https://www.youtube.com/watch?v=bZ3cTenT9sY

Klara Čičić  Hello Joy and welcome to this wonderful site! I had mitral valve repair 3 months ago minimally invasive (right sided thoracotomy). It is very doable and you can do this! Especially with help from this lovely and supportive community. Keep educating yourself, that is  important to relieve anxiety...