Anastasia's Guestbook

Anastasia B  Thank you for sharing your story! Unfortunately, this option not recommend to me due to relatively early age. The valve repair is the best option based on all discussions I had with the doctors. 

Kimberly Eisenhut  Doris, boy do I understand your feelings of being kind of alone with tricuspid valve issues. You are in a good place though, as even though there are only a few of us, the support, love, kindness and information is so helpful. Tricuspid is coming along and they are making progress every day. If you have specific questions, Adam is always ready to ask the experts for you.

Anastasia B  Thank you for reaching out Doris! 

I have contradicting opinions: some doctors recommend to still wait as I don’t have symptoms and I have this leaking valve since childhood as a result of CHD. They think I can live in current state for many more years as my body compensating well the leakage. Others, recommend to do sooner and not wait till it progresses more. I’m still in research for the right decision here. 

I’m hoping for the repair when time comes for the surgery but obviously it is not a guarantee. I found a place in Germany (I live in Europe, Ireland) where they can do minimal invasive on the side open heart surgery and on a beating heart and this sounds like the best option so far.  

Let me know if you have any other questions, happy to share what I learnt so far. 

Kimberly Eisenhut  I had a mini right thorecotomy to repair my tricuspid with a Medtronic contour ring about 4 weeks ago at Northwestern Bluhm Cardiovascular Institute in Chicago. I went from severe/ massive regurgitation to trivial after surgery. From all the research I did before surgery , I found it's better to do before your heart enlarges and you are further along as far as symptoms getting worse and before it puts you at greater risk for complications. It is best to get a couple of opinions from top hospitals and surgeons who've done thousands of these surgeries. Let me know how you are doing or if you have any questions. I will start cardiac rehab soon and am glad I got it done before it started affecting my liver and kidneys also. I won't sugar coat it, it's a difficult surgery and recovery, but the alternative is worse I believe. Just make sure to advocate for yourself, ask as many questions as you need to and make an informed decision 👍❤️

Doris Wunsch  This is embarrassing, I am still learning my way around the ‘webpage’ 140 days later. I was under the impression I would get an email telling me if anyone had made contact but it looks like that is not the case. Thanks for sharing your experiences. 
I can relate to the dilemma of making a decision! I went for a second opinion at Mayo Clinic and ended up with second and third opinions. But I’m on the path to having my tricuspid valve replaced by TTVR , they will go in through groin and put in Evoque valve and prior to that I will get a new pacemaker that sends wireless commands to my heart (remote) requiring no leads through the valve. 
appreciate the feedback on recovery, Kimberly. So far I have not heard much concern but see from reading your reply and others with different ‘less demand’ valves that it is very individual. 

Kimberly Eisenhut  Well, I'm updating quite a while later here and many complications and hospital stays later. This has been just insane what I've been going through , you'd need to read some of my other convos as I do not think I can go through it all here again. At this moment though, I can say I'm still here, grateful and fighting these chronic complications from pericarditis and now accelerated junctional arythmia. I'm on a biologic injection once a week called Rilonocept to keep my CRP down. Still almost always in junctional rhythm, which everyone who gets recurrent chronic pericarditis normally goes back to sinus after it's under control and mine did not! Next steps are very uncertain, as the drug my EP now wants me to take the for a month is Flecainide and I'm very unsure about taking it. It's a very scary medication to say the least . I don't want to end up with an even worse arythmia. 
Maybe we can connect and support each other once in a while . Tricuspid is just not like other valves . It's location and anatomy is just much more complicated and risky to mess with. We "difficult" cases , as my surgeon liked to call me, need to stick together and try to share information here. 
I hope you are doing well and look forward to your next update .

Anastasia B  So sorry to hear about all these complications, Kimberly! I hope it will be resolved as soon as possible 🙏 I agree tricuspid valve is a tricky case and there is not much data on it vs other valves :( 

I’m in touch with German clinic and go there every year on top of my check-ups in Ireland. German doctors recommend me to wait, since I don’t have symptoms and heart enlargement is not critical.

My case is also complicated because I likely live with TR all my life, it is likely developed at a result of pulmonary stenosis that I had till it was fixed at age 4. Based on German doctors, it makes my case even more unique and general guidelines don’t really apply to me :(

Kimberly Eisenhut  I'm sure you will make the best decision for yourself when the time comes. Trust your gut feeling, you'll know when you're ready and you've chosen the right surgeon. You know; I'm half Irish (mothers side) and half German (fathers side). Always wanted to travel to Europe , just don't think it's in the cards for me. I'll travel in my imagination I guess. If you ever have any photos of the beautiful countryside you'd like to share here, it would be most welcome 😊🫶
I look forward to keeping in touch.

Anastasia B  Thank you for reply! All the best with your procedure, I hope transcatheter will work for you, I heard great things about this new option .

Kimberly Eisenhut  I am not sure I can get it yet, but have to wait until my patch testing is complete. A lot of "ifs" right now, which is hard to handle most days. How are you doing?

Anastasia B  I hope you will get clarity soon on your next steps! I’m planning another trip to Germany to another clinic. Basically looking for the most experienced surgeon in tricuspid valves repair.