Guestbook of Anastasia B

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Anastasia Bgot a new guestbook post

14 days ago

Anastasia B reacted to this

Henry Ticknor posted a note for Anastasia that says:

I also had a leaky tricuspid valve due to an ICD lead. In May I got the the new Tric bicaval tricuspid valve repair system that avoids messing with the valve ...Read more

I also had a leaky tricuspid valve due to an ICD lead. In May I got the the new Tric bicaval tricuspid valve repair system that avoids messing with the valve itself and puts a valve/sent in both the superior and inferior vena cava preventing blood from flowing backwards. It’s a trial device approved in Europe but still available only at certain medical centers in the US.

Anastasia B Thank you for sharing your story! Unfortunately, this option not recommend to me due to relatively ea ... Read more

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.

Anastasia Bgot a new guestbook post

14 days ago

Anastasia B reacted to this

Doris Wunsch posted a note for Anastasia that says:

Hello, Anastasia

I saw you have a tricuspid valve issue, with regurgitation, and wanted to connect. I have the same as a result of complication ...Read more

Hello, Anastasia

I saw you have a tricuspid valve issue, with regurgitation, and wanted to connect. I have the same as a result of complication when I was having pacemaker lead replaced. The lead tore my valve and now I’m in the process of testing ( second set) to find out surgeons recommendation. Due to pacemaker lead going through the valve it may impact my options.

have you settled on a repair? Did you all set up a tricuspid group? It feels very lonely going down this path.

Doris Wunsch

Bellingham, Washington

dwunsch1@comcast.net

Kimberly Eisenhut Doris, boy do I understand your feelings of being kind of alone with tricuspid valve issues. You are ... Read more

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.
... Read more

Kimberly Eisenhut I had a mini right thorecotomy to repair my tricuspid with a Medtronic contour ring about 4 weeks ago ... Read more

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 👍❤️

Anastasia Bgot a new guestbook post

141 days ago

Kimberly Eisenhut posted a note for Anastasia that says:

Anastaisia,
I also have severe 4+ TR, but I have been having symptoms for a while now. I am looking at transcatheter and possible minimally invasive with... Read more

Anastaisia,
I also have severe 4+ TR, but I have been having symptoms for a while now. I am looking at transcatheter and possible minimally invasive with Northwestern in Chicago. I have also been through 8 years of monitoring and find it very difficult to find much information on outcomes and numbers. My Surgeon and cardiologist say this is due to there not being many recent studies as they are all more than 5 years old, it is hard to quantify. The good news is that there are now more options for us and the outcomes keep getting better. I am having some extra difficulty because of my nickel allergy and there is nickel alloy in many of the devices, so I will be going for something called patch testing on June 24th to find out if I can have the surgery they are reccomending is best for my posterior leaflet that is the main culprit. I would ask questions and don't be shy about asking anything when it comes to advocating for yourself and your care from your cardiologist. I would love to try my best to answer any questions you may have if I have the answers. Timing TR is tricky and it can be isolating to be a TR patient for sure, so please feel free to reach out any time. We are all here for you

Anastasia B Thank you for reply! All the best with your procedure, I hope transcatheter will work for you, I hear ... Read more

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" r ... Read more

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 anothe ... Read more

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.