Going in for 7th open heart surgery - thoughts on On-X MHV?

[gocubs]

TL;DR: 7th open heart surgery to replace calcified bovine valve is upcoming. Any thoughts good/bad on the On-X mechanical valve? Lower INR requirement intrigues me.

Hi all,

I'll be going in soon for my 7th open heart surgery. I was born with congenital aortic stenosis, had first repair at 2 yrs old, 2nd repair at 7, replacement at 8 yrs old (St. Jude mechanical), two replacements when I was 12 (porcine) and finally the current bovine which was when I was 19.

I'm 30 now and this cow is on its last legs (pun somewhat intended?). Given the level of calcification and aortic root revisions I have had, not a candidate for TAVR. My choices thus are SAVR with another tissue valve or mechanical. Given how many surgeries I've had, this one is going to be very risky and my surgeon has suggested a long and hard look at mechanical so I can avoid doing surgery #8 when I'm 40.

Originally I was focused solely on tissue valve, because 4 years with a St. Jude when I was younger was miserable, and I don't want significant blood thinner issues again. However, they brought up the On-X valve which is apparently FDA approved to be maintained at a much lower INR than a standard MHV. The immature part of my brain wants to just kick the can down the road 5 years and do another tissue, but I really am considering mechanical now if the On-X truly can be used with less warfarin and thus a smaller (albeit still large) impact on daily lifestyle. Done a ton of research on it, but interested in some good old fashioned patient testimonials.

Any thoughts/opinions/experiences for the On-X? Greatly appreciated!

 

[pellicle]

Hi

well you win!

I've only had 3

I had my first at 10 (repair) second at 28 (homograft) third at 48 (mechanical)

to specifically address your question on the INR issue: I don't see that its more than advertising and (as we say in Australia) "come in spinner" for the folks who are in abject ignorant horror of INR and somehow associate INR as maker for early death.

Why?

Well there is little evidence to show that one can manage an INR around 1.7 ... indeed 1.7 should be considered the "bottom of the line" ... to "sit on" 1.7 is essentially impossible. You will dip below it ... or hover above it.

If you are targeting that then reasonably aiming for 2.5 as a target is essentially no different.

Evidence is mounting (from numerous studies) that having an INR between 2 and 4 is of insignificant risk:

I refer you to this graph:

from this study:
http://jamanetwork.com/journals/jama...article/415179

for a starter


Basically all the bileaflet pyrolytic carbon designs are within a bees dick of each other (and by the way bees are most commonly female, and so while there are males their dicks aren't big ... so averaged over the population a bees dick isn't a big thing)

I have an ATS ... if I were you I'd pick a mechanical and hope to not need another OHS because NOBODY wants to have 9 ... even Cats would get worried

 

[dick0236]

WOW, like Pellicle, I too am amazed. Your bio says you are a manager of research so I'm sure you've done a ton of research this time. I'll only add that dealing with warfarin as an adult is a lot easier than as a child. I also got my valve when I was young (31).....it is a 1st generation mechanical and I still have the original and it seldom interferes with my life or lifestyle.

........and welcome to the forum.

 

[Juli]

Gocubs,

I have on On-X now for 6 months and based on my experience can only recommend to go for a mechanical valve.

You have been through a lot and also have a lot of experience - but I can only assure you that managing the INR - I test at home - is not that difficult. Good luck!

 

[Warrick]

"(albeit still large) impact on daily lifestyle. Done a ton of research on it, but interested in some good old fashioned patient testimonials."

my own experience with warfarin is about half a minute a day to take the dose and about 2 minutes a week to self test with a coaguchek and maybe a few minutes to review previous recorded INRs if I feel I need to do a dose change.

IMO from what I've read, and people I know on warfarin (several persons), self monitoring is the best thing out there if you are able

For me it has really been that simple after a few hiccups at the start.

Certainly going by Dick you can have a mechanical now at 30 and touch wood live the rest of your life with no more OH surgeries

 

[pellicle]

Hi again

... in my quick read lastnight (I had just got back from a great day out on the ice with family) I failed to observe this was your first post. I'm sorry I failed to properly welcome you.


I have a couple of questions (and a couple of observatios) , and for now I'd say my thoughts above still stand as what I'd say to do but your answers may influence that somewhat.

I'm 30 now and this cow is on its last legs (pun somewhat intended?). Given the level of calcification and aortic root revisions I have had, not a candidate for TAVR.

to me that's a good thing because if you have a TAVR then you'll get less time than you're expecting (evidenced by your experience with the well known phenomenon of younger people rapidly destroying tissue prosthetic valves. Then when that TAVR fails (I'd bet no more than 5 years) you'll perhaps be able to get a valve-in-valve but then that will fail sooner requiring you to have an OHS in probably 9 (and in a more weakened state).

Given how many surgeries I've had, this one is going to be very risky and my surgeon has suggested a long and hard look at mechanical so I can avoid doing surgery #8 when I'm 40.

this was something I'm wondering about and why it wasn't said to you earlier ... My surgeon was clear on the dangers of a 4th surgery and so on the occasion of my third (at 48 years old) advised me to consider this with the utmost seriousness and pointed out that "surgeons won't be lining up behind you to do your 4th" due to risks.

Originally I was focused solely on tissue valve, because 4 years with a St. Jude when I was younger was miserable, and I don't want significant blood thinner issues again.

this point is significant and if you don't mind explaining , what were your issues with blood thinners? (god I hate that term for anti coagulation cos it doesn't thin the blood)

Were your problems to do with failure to comply (being young)? Did you have actual medical issues? Or was it just the usual problem of most AC clinics (AC = Anti Coagulation) could not find their arse with both hands and seem bent on attempting to manage you blind folded with one arm tied behind their back and forcing you to have venous blood draws at inappropriately distant 4 week intervals?

Much of the world is moving to self management for the simple reason that its better for you (some people not, but you aren't mentally incompetent).

...but I really am considering mechanical now if the On-X truly can be used with less warfarin and thus a smaller (albeit still large) impact on daily lifestyle. Done a ton of research on it, but interested in some good old fashioned patient testimonials.

as I mentioned above the reality of the situation is that the On-X has done the extra yards and gone in for approvals of lower INR. However research is showing that the medical fraternity has not properly done due dilligence and has erred on the side of over doing AC therapy with the newer valves. The research is showing (as I mentioned) that the INR targets of all the newer generation bi leaflet valves (of which the On-X is one of) are able to be set significantly lower. The GELIA study (done on St Judes) shows that INR = 2 is not a problem.

Indeed research is showing that that:

• properly managed AC therapy yields much better outcomes and the incidence of stroke or bleed is hardly different to the "age related general population"
• self management gives much better outcomes than the older (horrible word) "Usual Care" of the past.
• INR targets for aortic position valves in patients who are not "high risk" (say, one in Atrial Fib) a target INR of 2.5 is suitable. (Note: a target INR of 2.5 usually translates to keeping within the range of 2 ~ 3)

If you are interested in INR management I would encourage you to read my blog post on that here: http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

Please feel free to contact me if you feel like a chat ... if nothing else we have both been in and out of hospitals for valve stuff since were were kids.


Best Wishs

 

[jlgreiner3]

Hi there!

I don't have nearly the surgical history that you, as my first surgery was in September 2016, but I did get an ON-X valve and I'm the same age. Mine was to replace the Aortic valve and I also had a graft done for an Aortic aneurysm. I haven't found the Coumadin to be too limiting. It takes a little bit in the beginning to figure out a dose and then some bumps to figure out what too many greens actually is for you to throw your INR THAT much off, but less than 6 months post op and I feel like I have a handle on it. I test at home with Coaguchek and would definitely recommend it. Good luck to you!

 

[rnff2]

As others have said you take the prize, I have only had 3 OHS myself. I wanted a tissue valve but knew deep down that mechanical was probably the better choice given my history and my cardiologists agreed. It wasn't easy to convince myself and I was back and forth for many weeks trying to decide. I have now had my On-x mitral valve for just over a year. Coumadin hasn't been as big of a deal as I thought it would be, it's really quite simple once you get the hang of it.

​​​​​​Good luck!

 

[gocubs]

Thanks everyone for the info...definitely appreciate it.

WOW, like Pellicle, I too am amazed. Your bio says you are a manager of research so I'm sure you've done a ton of research this time. I'll only add that dealing with warfarin as an adult is a lot easier than as a child.

Thanks...ironically, the market research team I manage, most of our work is with pharma companies so I'm in this every day. My biggest challenge as a kid was wild swings of my PT for no discernible reason, so to your point if it's easier to manage as an adult all the better.

@ pellicle , thank you for all the details...couple of replies to your questions below!

to me that's a good thing because if you have a TAVR then you'll get less time than you're expecting (evidenced by your experience with the well known phenomenon of younger people rapidly destroying tissue prosthetic valves. Then when that TAVR fails (I'd bet no more than 5 years) you'll perhaps be able to get a valve-in-valve but then that will fail sooner requiring you to have an OHS in probably 9 (and in a more weakened state).

100%. To be sure, the TAVR team has pushed me to do this but my own doctor is the one who put the brakes on it (plus my own research while watching some TAVR procedures being done). Too much calcification to guarantee that the new valve seals against the annulus properly, plus the issues you mentioned that at the end of the day, it's just kicking the can down the road with a tissue valve anyway.

this was something I'm wondering about and why it wasn't said to you earlier ... My surgeon was clear on the dangers of a 4th surgery and so on the occasion of my third (at 48 years old) advised me to consider this with the utmost seriousness and pointed out that "surgeons won't be lining up behind you to do your 4th" due to risks.

Haha...oh, it was said, but when I was younger there was just no choice. It was one of those "this is very risky but it has to be done" type of deals. Most of the early surgeries were for regurgitation (only the 2006 one was for calcification), so they had to do a lot of work on the root as well. I had the same surgeon for 2-5, cleaning up the mess left by surgeon for #1. New guy for #6, and then now another new guy for #7.

this point is significant and if you don't mind explaining , what were your issues with blood thinners? (god I hate that term for anti coagulation cos it doesn't thin the blood)

Were your problems to do with failure to comply (being young)? Did you have actual medical issues? Or was it just the usual problem of most AC clinics (AC = Anti Coagulation) could not find their arse with both hands and seem bent on attempting to manage you blind folded with one arm tied behind their back and forcing you to have venous blood draws at inappropriately distant 4 week intervals?

Much of the world is moving to self management for the simple reason that its better for you (some people not, but you aren't mentally incompetent).

It was mainly because I was so young, they had a tough time keeping the PT in check. It'd fluctuate wildly for no reason sometimes and to your point, the people testing it and giving my family feedback were really dense and bad at managing it in a 8-12 year old. The infrequent testing made that feedback even harder.


Being able to self-manage sounds freaking awesome cause I'm kind of a Type A personality anyway...much rather do it myself.

Indeed research is showing that that:

• properly managed AC therapy yields much better outcomes and the incidence of stroke or bleed is hardly different to the "age related general population"
• self management gives much better outcomes than the older (horrible word) "Usual Care" of the past.
• INR targets for aortic position valves in patients who are not "high risk" (say, one in Atrial Fib) a target INR of 2.5 is suitable. (Note: a target INR of 2.5 usually translates to keeping within the range of 2 ~ 3)

If you are interested in INR management I would encourage you to read my blog post on that here: http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

Please feel free to contact me if you feel like a chat ... if nothing else we have both been in and out of hospitals for valve stuff since were were kids.

Thank you for this...I really appreciate the detailed info (working in research, it's my jam). I may take you up on that offer!

 

[pellicle]

Hi

Thank you for this...I really appreciate the detailed info (working in research, it's my jam). I may take you up on that offer!

happy to help ... PM me if you want. Happy to throw some PDF's at you (or share them out of my dropbox) that are related to this.

Research is kinda my Jam too ... (Masters by Research not coursework)

Best Wishes

 

[pellicle]

its been a year now ... I hope gocubs is still with us