AVR With Sorin Top Hat - 5 April 2013

[clumsydancer]

Hello all and thank you for this forum and your inputs and experience.

I am a 38 year old with severe AI. It was only recently discovered and I believed I was asymptomatic until it was pointed out that what I was experiencing was not normal. Anyway, my EF is 40% at the moment and I am not severely symptomatic. I am very concerned with going into surgery, yet I know I need it to prevent further damage.

I have a couple of questions for those of you knowledgeable on the subject. As my EF is 40%, is there a good probability that it will go up after AVR? Also, everyone says they feel better after AVR, is that due to EF improving or perhaps better circulation?

Any information you are willing to share is appreciated. I admire all of you who have been through this. It is certainly an emotional roller coaster ride for me.

Nate

 

[Heart Of The Sunrise]

Hey Nate:

Two weeks ago today this time I was 2/3's the way through my surgery. My EF pre-surgery was 47. I asked my surgeon what my EF would be after surgery. He said it would be 60. They did a trans-espochgeal echo at the completion of my surgery. My EF is now 60. I feel fabulous!:thumbup:. Already did two twenty minute walks today. I will be doing a third one later today.I turn 57 on April 12th and I have never felt better in my entire life! Your emotional roller coaster is completely normal. I was a basket case. But, when I finally decided I was going to take control of things as much as I could... things started getting much better. I was blessed that I ended up being a patient of Dr. Bavaria. This was pre-destine in a way. Then I learned as much as I could about my condition. Then I learned what my options were. Then I decided what I thought was best for me. Thanks to this website I was able to verify that Dr. Bavaria performed the specific procedure I wanted and that he implanted the On-X Valve. I too had severe Aortic Insufficiency. Best of luck on the 5th.

 

[clumsydancer]

I can't tell you how much that helps me, Heart. The one thing I've been dreading is my EF not bouncing back. My surgeon says it will and my cardio says likely not for some reason. He said he hopes it does. I'm getting the Sorin Top Hat. I hear it's a good one, but heard the On-X is really good. Do you know the difference?

 

[Heart Of The Sunrise]

I do not know the Sorin valve at all. I know based on my research the ON-X valve in my opinion is the best. If that is an option go with it.
If the studies go favorable sometime in the future On-X valve recipients may be on reduced Coumadin with an INR of 1.5 to 2.0. There is a chance
that they would only need to be on an 325mg asprin per day. This would be great!:thumbup: I just looked up the Sorin- It looks similar to the On-X.

 

[pellicle]

Hi

Well I don't know the sorin either. I have an ATS (which I recently learned is now the medtronics). This valve, the ATS and the St Jude represent the most popular out there at the moment.

I needed a replacement to my aortic artery due to aneurysm and my surgeon chose the ATS as it was the only one approved here in Australia with the pre attached aortic riser at the time.

Personally I recommend reading lots BUT Heep in mind that your surgeon has a wealth more experience and knowledge than you will likely get. So be guided by that in the end. If you have sincere reservations seek a second opinion and raise the concernes there.

It certainly is a roller coaster, but keep telling yourself that it can be worse (you don't want to know). Keep sight of the fact that while surgery has some risks (as does driving your car) the alternative is a certain shorter lifespan.

Don't over do the self exa,I nation of your fears. Know that they are there, look them in the eye and get going. If you have family then doing this will reduce the hell they go through and increase how much love and support they can give to you.

Remember that life is about change and adapting to those changes. Your life has changed now. Wishing it had not is understandable but you can never go back.

Happiness will be found in accepting the reality of the situation and making the most of your new life with the changes.

 

[clumsydancer]

Thank you Pellicle and Heart. I appreciate the advise and conversation. I love the idea of aspirin instead of Coumadin for sure! I wonder if the Top Hat will be in the same boat. It's a good question for my doctor I think.

Pellicle, will you share details of your ejection fraction? Did it improve?

 

[pellicle]

Hi

love the idea of aspirin instead of Coumadin for sure! I wonder if the Top Hat will be in the same boat. It's a good question for my doctor I think.

well I'd be wary about that. There is little reliable evidence that warfarin (Coumadin is one of the trade product names, I happen to use Marevan) is harmful when used and monitored. If the study which was referred to above is the one I was thinking of, it has been ceased AFAIK.

There has been one recent study suggesting that there may be a link with long term aspirin and macular degeneration. This study is over a small group and does not in itself mean "OH GOD, I'll avoid the aspirin" it means "hmm ... we need to look into this more"

There is a lot of angst about it in the community (I suffered from such aversion before going to a mechanical) which there seems little sound evidence to support.

At least the "devil" we know with warfarin is well known and has a very long history of use.

Pellicle, will you share details of your ejection fraction? Did it improve?

sorry, but I just don't know it. I have a habit as an engineer to know lots of stuff, but as I don't know what that figure really means or what is normal in others I just didn't remember it. I consider it to be as abstract as knowing that my Android tablet has a Cortex A9 architecture (well less abstract to me actually, as I'm thinking of rooting the tablet and installing another ROM on it).

I'm sure it improved as my previous valve was leaking (even I could hear that on the ultrasound dopplers).

 

[kimcdougc]

Hi Nate, I to am waiting for my OHS to replace my aortic valve. Read lots. As soon as I pick my Dr. (next week) I will have my surgery scheduled. I have known for about 9 years that I would have to have this surgery done. When they finally say it is time...emotions change. I have personally only had a couple of pity parties. I am at the point now where I am just ready to get it done and over with. Good luck on your research. Reading all the comments here helps the most because all the people here understand everything you are going through.

 

[Heart Of The Sunrise]

clumseydancer and kimcdougc: Now that I am a veteran and on the other side of the mountain I can truely say that the common statement "the waiting is the hardest part" is right on target and so true. On my second day post-up when the chest tubes came out...suddenly... I felt so good that they were actually discussing that I might go home on Friday. 9 hours on the operating table with the complete reconstruction of my ascending aorta("Hemiarch Reconstruction") and I almost went home on day 4 post-op!:thumbup: This is commonplace-Cardiac Surgery today has truely advanced to such an amazing level and will continue to do so! If, I hadn't developed a common complication called an ileus I would have gone home on day four post-op!. An ileus is the definition of my GI tract's inability to restart.So I had to endure 3.5 days of an ng tube snaked through my nose , down my throat and into my stomach. 3.5 days of misery. I was strictly on IV fluids. Nothing by mouth. 3.5 days of watching what looked like beet juice being sucked out of my stomach. Because there were extreme difficulties in getting the ng tube in. They left the tube in an extra day just as a precaution, even though it wasn't needed. We just did not want to go through the ordeal of installing it again.REMEMBER THIS: THIS IS WHAT WORKED AND WAS EASY-Place your chin against your chest. As they insert the tube you suck down as much water as you can through a straw and this helps the ng tube get down your throat and into your stomach.Here is a funny story. On my last day while disconnected from suction the ng tube starts leaking really bad. I had brought red Gatorade with me which they allowed me to sip almost constantly. So, the tube starts leaking red Gatorade and is really making a mess. I push the nurse call button. A CNA (Certified Nursing Assistant) answers my call. She takes one look at me and announces to the nurse's station just outside my door-"HE'S BLEEDING!!!!!!!!" My RN at the time Michelle comes running in expecting the worst.....needless to say she took great pleasure in announcing that I wasn't bleeding and that it was just red Gatorade that was all over me and the floor!:biggrin2: Follow this link:http://www.youtube.com/watch?v=d5jGG4sH2Cc There is a series of videos about AVR. My surgeon is featured and he pretty much describes and performs the exact surgery that I had including Deep Hypothermic Cardiac Arrest. However, the patient in the videos went with a tissue valve and I went with a mechanical valve.

 

[Lucky]

Hi,

I had a Sorin Fitline fitted about 11 years ago.
In the UK we do not have a choice in the type of valve used but
I believe it is a European model.
It has always been fine since day one. Very loud at first but I do not hear it at all now.
At the most recent check it is A1.
I shall be upset to have it changed (if necessary) when I have an aortic soot replacement.
Best wishes
Adrienne

 

[kimcdougc]

Thanks sunrise for your take on it all! I am just ready to get it done with myself. Going to interview (2) surgeons next week and will schedule a date with one of them for the surgery! Keep getting better everyday!

 

[iheart]

I also appreciate Heart's and everyone's input on this forum--thanks for taking the time to update us. Fifteen days until I go under the knife!

 

[missaviator]

I had a EF in the 20's!!! Had emergency open heart surgery 12/26/03, Aortic and Mitral valve replacement. A bit over 9 years, post op and my EF is 77!!!
You will rebound and feel amazing! I strongly feel that "mind over matter" determines ones experience and recovery.
Stay positive and be a tough fighter!!! You can do it!!!
Only on 325mg asprin a day.

 

[clumsydancer]

Hi all,

Thank you all for the support in this preop forum. I am now postop and going to post my postop information in that forum.

Nate