Lorilyn's Guestbook

Kimberly Eisenhut  Elizabeth, You had Tricuspid surgery? Was it open heart or minimally invasive? Repair or replace? I am very happy you posted and hope to hear back from you about your journey. Best wishes always, Kim

Elizabeth Darwish   Hi Kimberly, I had open heart surgery, it was a repair of the tricuspid valve, this was my second open heart surgery. I just remain totally positive. 

Kimberly Eisenhut  I just saw Dr Malaisrie at Norwestern today and he said tricuspid surgery does not prolong life, it just lessens symptoms. Is that true!? I was just so upset after he left the room, I am so confused by this. He is recommending getting me into a study for the transcatheter repair with a newer divice, I forgot the name of it with Dr Davidson at Northwestern. He then siad if I do not qualify for that, he would do surgery himself open heart. When did you have your 1st one done and how long was it before your second one? What kind of symptoms do you get and why did they decide to do the first one? Were you at severe or worse and what symptoms did you have at the time.
My daughter nad granddaughter were with me today when he told me this and we were all pretty upset. Anything you can add or any advice you can give me would be so appreciated, as I want to be posotive, but I am not getting a good feeling from the Drs lately. Thank you and hoping to stay in touch with you, as it is impossible to find people like me on here.

Kimberly Eisenhut  Just to be sure, was yours only tricuspid (primary)? Do you know what caused it? I do not, they just said I must have had an undiagnosed infection at some point.

Elizabeth Darwish   Hi Kimberly, okay I should explain i had my first open heart surgery years ago and that was for a hole in the heart. Years later I needed a pacemaker. So they say when you have a pacemaker one of the leads can cause damage and effect the tricuspid valve. I was fine after I had the pacemaker which was 2009, lived a normal life, it was only in 2019 started to get a few symptoms of breathlessness amd occasionally b/p slightly elevated. I didn't take much notice of it. Then in 2021 I noticed a vein in my neck really protruding and pulsating. So went to see my heart doctor who said this along with the breathlessness and some ankle swelling were symptoms of tricuspid regurgitation. Had some more tests and it was confirmed that I had severe regurgitation. The surgeon explained that I did need the surgery, no doubt about that. He has always said to me that you can live a normal life when surgery is done. I admit am a little slower but I really do just live a normal life. There was jo mention about life being shorter. I believe if you can live a healthy lifestyle, do some low impact exercises, walking, exercise bike etc. Have a healthy diet, get enough sleep then you should be fine. Try to always be positive. Life is for living enjoy each day.

Elizabeth Darwish   I think you get some surgeons who don't exactly have good social skills, really don't worry about what he said. 
I know its scary and it's the unknown, but believe me I feel so much better 

Kimberly Eisenhut  Thank you so much! What surgery did you have done for tricuspid, as this is the biggest problem right now. Was it open heart ? I am allergic to nickel and now they are not sure I can have the trial they were trying to get me into with the CLASP 11 trial at Northwestern in Chicago which would be trancatheter procedure. If I cannot get in that sudy I may need to go the open heart route. What exactly was your procedure ? I am so glad I am able to speak with you here, as I feel so isolated and alone in this. They also found a small hole in my heart during the TEE, which they havent even mentioned. I will reach out to them about that also.

Elizabeth Darwish   I had open heart surgery for the tricuspid valve. It sounds more scary than it is. I know it is major surgery but with today's technology and a good surgeons skills, you should be reassured that the surgery will go well and recovery is slow but you will get through it. I hope you have family or friends who can support your recovery. 
You just need to take it easy, follow what they advise you to do or not to do, always think positive that's half the battle to have positivity. Look at me I am living my life now. Not symptomatic anymore. I do have to take medications and know my limitations but really I would recommend that you have the surgery. X
Anything else you want to know you can always ask me.

Kimberly Eisenhut  Thank you so much for the encouragement and response Elizabeth :)
I will ask about the Medtronic device, I wonder if that one has nickel in it also. I would so much like to keep in touch, my email is kimebecker@gmail.com. Id love to exchange numbers if you wouldnt mind emailing me. I love your attitude and optimism, it is refreshing and appreciated. You have a good heart

Kimberly Eisenhut  I forgot to ask, what procedure are you having done and what did they say is the anatomical problem with the valve they see? I am so glad you posted :) I need a friend here to support and who understands our unique situation.

Craig Howland  Hey Kimberly… I have a bicuspid valve with Aortic Stenosis and an Ascending Aortic Aneurysm… Surgery is scheduled for Wednesday

Kimberly Eisenhut  Craig, I will be thinking and praying for you. Please keep us posted and stay strong, you've got this!

Kimberly Eisenhut  Yes I was, but now after TEE I am told it has been severe since 2023. I was put on diuretic last week and will have another TTE (echo) at Northwestern and them see the cardiac surgeon, Dr Malaisrie after my test on May 27th. My insurance will not cover trancatheter repair, so most likely will need to be open heart. How about you? How are you and what is happening?

Lorilyn Bridges  8 years seems so long to have Mod to Severe TR. I thought the life span was about 2 years after diagnosis. There seems to be so much  contradicting data and information out there. 
I'm scheduled for a Isolated Tricuspid Valve Replacement in May.

Kimberly Eisenhut  I agree, what symptoms do you have? Swelling, fatigue, dizziness? I hate this waiting and feel like thay have put me off so long, but there really were not many treatments until this past year. Why have they decided to replace and not repair for you?

Kimberly Eisenhut  I see you have an extremely dilated right atrium. I do not have that, it is very mildly dilated, I think that is why they decided to go ahead sooner with you. Once it starts affecting the right side of the heart, they move more quickly to make sure you get a better outcome. 

Kimberly Eisenhut  Also, what medications have you been on? I have been on bp meds, Lisinipril and amlodipine and last week started diuretic. I was on a statin, but went off a month ago.