coming up on AVR #2...

Help Support ValveReplacement.org:

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
79
So I met with the surgeon that my cardiologist set me up with. When I saw my cardiologist, he advocated for a TAVR. I was unconvinced that was the right choice for me. Appealing, yes (potentially easier procedure & no anti-coagulant), but I really figured that it was time for a mechanical valve. He told me that the surgeon would tell me the same thing (go with a TAVR).

So I was a bit taken aback this afternoon when the surgeon (Dr. Eli Capouya) almost immediately said that I should get a mechanical valve. After all of the reading I've been doing, on this forum and elsewhere, I had come, slightly begrudgingly, to the same conclusion (before I saw him today).
We sat and talked for quite a while and went over every single thing I wanted to discuss, including the potential for an aneurysm. It doesn't look like I have any inkling of one at this point.

Next will be to get a heart cath scheduled and possibly have the SAVR, with a St. Jude valve, the following day.

Lots of emotions right now, but I do feel good to have come to a decision that jives with what my surgeon thinks. And I feel comfortable with him. And it'll be good to get this done and then not ever (fingers crossed) have to worry about having another OHS.

I am still going to see about getting a second opinion, but I'm less concerned about that after today.

If anyone has any personal experience with Dr. Capouya, I'd love to hear about it.

I encourage you to research ch the surgeon and the facility. The best hospitals in Atlanta only scored 54 out of 100. I was not willing to risk my life to those stats even though they do plenty here. My insurance covered Cleveland Clinic and all I paid for was travel and lodging. That was still not an insignificant amount, but well worth the reassurance that I had the best work on me. Ask your facility and doctor for their stats, how many of these surgeries do they do, what is their mortality rate, do they break it down by proactive vs. emergency and by age? National average mortality for what I had was 3.7%, but latest year Cleveland had on record (2017) was 1.1%. Cleveland breaks down their stats by type of surgery.

Don’t get me wrong any hospital can have issues or be great, I just did my homework and wanted all the odds possible on my side.
 

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
4,954
Location
Far side of the moon
Congratulations Chris on making your valve choice. I too have the Edwards Magna 3000, implanted in 2005 when I was 52. It seems that the decade age difference at our time of valve replacement did significantly impact our valves’ longevity. Hopefully you’ll never face this issue again. Best wishes, Mary
 

Chris

Active member
Joined
Jul 19, 2011
Messages
33
Location
Los Angeles, CA
I encourage you to research ch the surgeon and the facility. The best hospitals in Atlanta only scored 54 out of 100. I was not willing to risk my life to those stats even though they do plenty here. My insurance covered Cleveland Clinic and all I paid for was travel and lodging. That was still not an insignificant amount, but well worth the reassurance that I had the best work on me. Ask your facility and doctor for their stats, how many of these surgeries do they do, what is their mortality rate, do they break it down by proactive vs. emergency and by age? National average mortality for what I had was 3.7%, but latest year Cleveland had on record (2017) was 1.1%. Cleveland breaks down their stats by type of surgery.

Don’t get me wrong any hospital can have issues or be great, I just did my homework and wanted all the odds possible on my side.
What do you use to research the hospitals? Same websites that are used for the doctors? Something like Vitals.com?
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
79
Start with US News and Health Report they have extensive ratings and scores, be sure to focus on the Cardiac numbers not other numbers. Be sure and research your surgeon, mine does complex heart re-operations and heart/lung transplants so mine was a walk in the park for him.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670/cardiology-and-heart-surgery


Cleveland is also very detailed and transparent with their numbers that they publish:

https://my.clevelandclinic.org/departments/heart/outcomes/385-surgical-procedures

https://my.clevelandclinic.org/departments/heart/outcomes/424-aortic-surgery

Just for giggles these were my options in Atlanta, and remember Cleveland scored 100/100:


Piedmont 57.7/100
https://health.usnews.com/best-hospitals/area/ga/piedmont-hospital-6380180/cardiology-and-heart-surgery

Emory St. Joseph 50.0/100
https://health.usnews.com/best-hospitals/area/ga/st-josephs-hospital-6380200/cardiology-and-heart-surgery

Kennestone 42.9/100
https://health.usnews.com/best-hospitals/area/ga/kennestone-hospital-6380775/cardiology-and-heart-surgery

And sure I know people that have had very successful outcomes in Atlanta, but I wanted the deck stacked in my favor as much as possible.

Over the coming weeks I will be writing up a detail report of my journey from being told to get it done through initial recovery.
 
Last edited:

Chris

Active member
Joined
Jul 19, 2011
Messages
33
Location
Los Angeles, CA
Start with US News and Health Report they have extensive ratings and scores, be sure to focus on the Cardiac numbers not other numbers. Be sure and research your surgeon, mine does complex heart re-operations and heart/lung transplants so mine was a walk in the park for him.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670/cardiology-and-heart-surgery


Cleveland is also very detailed and transparent with their numbers that they publish:

https://my.clevelandclinic.org/departments/heart/outcomes/385-surgical-procedures

https://my.clevelandclinic.org/departments/heart/outcomes/424-aortic-surgery

Just for giggles these were my options in Atlanta, and remember Cleveland scored 100/100:


Piedmont 57.7/100
https://health.usnews.com/best-hospitals/area/ga/piedmont-hospital-6380180/cardiology-and-heart-surgery

Emory St. Joseph 50.0/100
https://health.usnews.com/best-hospitals/area/ga/st-josephs-hospital-6380200/cardiology-and-heart-surgery

Kennestone 42.9/100
https://health.usnews.com/best-hospitals/area/ga/kennestone-hospital-6380775/cardiology-and-heart-surgery

And sure I know people that have had very successful outcomes in Atlanta, but I wanted the deck stacked in my favor as much as possible.

Over the coming weeks I will be writing up a detail report of my journey from being told to get it done through initial recovery.

Thanks for sharing that. The two hospitals that my (current) surgeon is affiliated with don't score very well.



So I'm going to do some more research. Thanks very much.
 
Joined
May 20, 2013
Messages
5
Location
Medina, Ohio
Start with US News and Health Report they have extensive ratings and scores, be sure to focus on the Cardiac numbers not other numbers. Be sure and research your surgeon, mine does complex heart re-operations and heart/lung transplants so mine was a walk in the park for him.

https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670
https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670/cardiology-and-heart-surgery


Cleveland is also very detailed and transparent with their numbers that they publish:

https://my.clevelandclinic.org/departments/heart/outcomes/385-surgical-procedures

https://my.clevelandclinic.org/departments/heart/outcomes/424-aortic-surgery

Just for giggles these were my options in Atlanta, and remember Cleveland scored 100/100:


Piedmont 57.7/100
https://health.usnews.com/best-hospitals/area/ga/piedmont-hospital-6380180/cardiology-and-heart-surgery

Emory St. Joseph 50.0/100
https://health.usnews.com/best-hospitals/area/ga/st-josephs-hospital-6380200/cardiology-and-heart-surgery

Kennestone 42.9/100
https://health.usnews.com/best-hospitals/area/ga/kennestone-hospital-6380775/cardiology-and-heart-surgery

And sure I know people that have had very successful outcomes in Atlanta, but I wanted the deck stacked in my favor as much as possible.

Over the coming weeks I will be writing up a detail report of my journey from being told to get it done through initial recovery.
I also had my surgery done at the Cleveland Clinic. Who was your surgeon if you don’t mind me asking?
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
950
Location
MO USA
When it comes to rock climbing, that's a pretty risky sport to begin with. I have one friend who almost killed himself at a young age in a leader fall. It was so bad he lost 6 months of his life and quit but he couldn't believe himself that he quit since he loved it so much.

So if rock climbing is your reason to live and you can't live w/o "pushing the envelope" than a tissue valve is for you. TAVR however is one step riskier than a tissue valve and has not been proven for long term use in younger patients.

Also when you look into options for valve surgery, remember that success or failure is judged upon patient survival, i.e., life vs. death. Complications, quality of life or how long the valve lasts are metrics that are kept separately and sometimes hard to discern.
 
Last edited:

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
4,954
Location
Far side of the moon
I’ve got a friend undergoing TAVR on May 14th, and he says they’ve quoted the risk at 5%. That’s higher than avr but the percentage is still relatively low.
 
Last edited:

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
950
Location
MO USA
I’ve got a friend undergoing TAVR on May 14th, and he says they’ve quoted the risk at 5%. That’s higher than avr but the percentage is still relatively low.
From what I was told 5 years ago, for a standard AVR, the risk for all patients is 2% and the risk for non-elderly, no complications patients is <1%.
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
79
I believe TAVR has several risk factors and my surgeon actually said TAVR risk goes down one you have had a bioprhtesis valve as it is easier for them to place the TAVR valve int he support structure of the old valve as it is well defined vs. a natural valve which will have irregularities.

I think the stats vary, I like what Cleveland publishes, basically their expected baseline 3.9% as I have seen that listed a few times as the overall average nationwide of course age and then proactive vs. emergency get carved out further. Just Aortic they do over 1200 a year and valve with ascending arch repair (what I had they did over 500 a year) was 1.1% in 2017 for elective and .3% in 2016. Curious to see their 2018 numbers as I hope to help those, 2 weeks today and so far so good. First 2 major hurdles passed (surgery and then 7-12 day mark) with only 30 day mark remaining to feel like the worst risk is behind me.

https://my.clevelandclinic.org/departments/heart/outcomes/424-aortic-surgery


Even their emergency rates in the single digits are impressive as I was always told in an emergency the survival rate is not very good.
 

Chris

Active member
Joined
Jul 19, 2011
Messages
33
Location
Los Angeles, CA
I'm fairly certain, at this point, that I 'want' a mechanical valve. I've an appointment with a second cardiologist, that's in my medical group, on Tuesday. That should satisfy Blue Shield, as they want me to get my first second opinion from someone within my group before they let me go elsewhere.
I just got off the phone with them and have started the process to see a third cardiologist (Dr. Henry Honda), who'll be outside of my current medical group, but is associated with UCLA.
 

ottagal

VR.org Supporter
Joined
Aug 8, 2008
Messages
2,440
Location
Can.
I'm fairly certain, at this point, that I 'want' a mechanical valve. I've an appointment with a second cardiologist, that's in my medical group, on Tuesday. That should satisfy Blue Shield, as they want me to get my first second opinion from someone within my group before they let me go elsewhere.
I just got off the phone with them and have started the process to see a third cardiologist (Dr. Henry Honda), who'll be outside of my current medical group, but is associated with UCLA.
Glad that you have made a decision, Chris. Wishing you all the best with your next consult. :)
 

Keithl

Well-known member
Joined
Apr 20, 2019
Messages
79
I'm fairly certain, at this point, that I 'want' a mechanical valve. I've an appointment with a second cardiologist, that's in my medical group, on Tuesday. That should satisfy Blue Shield, as they want me to get my first second opinion from someone within my group before they let me go elsewhere.
I just got off the phone with them and have started the process to see a third cardiologist (Dr. Henry Honda), who'll be outside of my current medical group, but is associated with UCLA.

Congrats. There is not absolutely right answer other than what is right for you. I am at 16 days post op and recovering well. I have an On-X valve and am pleased so far. Truly amazing what is medically possible today and how quick recovery goes.
 

SHARKY

New member
Joined
May 12, 2019
Messages
1
Hello. I am currently 20 months into my second tissue valve. Stenotic native bicuspid aortic replaced with bovine tissue 2006, age 52. Then at age 63, that valve somewhat disintegrated suddenly (valve "flail" where one valve stuck itself open and caused severe regurgitation). The recent 2-3 year echo prognosis for repeat AVR proved false as the valve actually failed due to my stenosis build-up. I got myself to ER since out-of-breath symptoms were strong. Good on me! Saved my life. Surgeon recommended same, updated tissue valve which I had been very happy with so that's what I got.
First OHS was text book. Second OHS was textbook until I went into aFib on day 7 of recovery. Resolved with a cardioversion then went into Atrial flutter. Stayed in hospital 5 more days, sent home on Amioderone and warfarin. Please know that between those two OHS events I had a retinal occlusion (embolic stroke to the retina of one eye leaving that eye permanently black blind) and subsequent carotid surgery which was part of the reason they kept me on warfarin for 6 months after second OHS.
Now that I am over a year beyond the event and going great I do wonder what I'll choose the 3rd time around. We'll see if the newer "treated" valve lasts longer. I did walk away from this one feeling less certain about everything, to be honest. Rattled me a bit. Not sure, still, if I could handle a mechanical with all its (presumed?) constraints and noises (I'm extremely sound sensitive). I absolutely hated being on warfarin.
Please do get a second opinion -- and a third if you need it! Informed decisions are best and everyone has their own physical peculiarities of structure, need and lifestyle.
Good luck and keep posting!
After saying that about the [St. Jude mitral valve/sound] manmade valves they have and the sounds that they make, from time to time someone will say they hear it, at Drs office, all the time. It has never become a problem, I was thinking the same in making my choice, but then again I was 62+ at the time the attempt at a fix job [Done in 1998 in Cleveland Ohio/Dec.] began to fail. I was leaning to the Tissue for awhile, but was also was thinking on the terms of, I said after the first OHS that I was not going thru that again, and unless that special someone was in my life, I perhaps would not have even considered doing it at all, and was just not going thru that again, period.
So here I am now, 66+/May-12-2019 and still kicking, but mine was almost a no-brainer, I WAS OVER 65. So even the thought of a tissue Mitral Valve was like, NOT this time. And fact is, this is my last open heart, I will not go thru it again, no matter what. it is all in g-ds hands.
so in conclusion, from this person that is the owner of a Saint Jude Mitral valve, the sound from it is not all that bad. Another thing, I take THC oils for pain management, and even if I did hear it, i dont care, LOL I dont know where in the USA you are or even if you may get Medical Cannabis.
good luck with whatever you decide to do, god be with you, and everyone here!
 


Top