Replacement in 2 weeks

[preciosa1974]

I’ve had a whirlwind of an experience. Thought I’d introduce myself. I was very sick a month ago and had crazy high BP with ambulance calls. The ER was no help really, but my doctor was incredible. She heard the murmur, saw the hammer pulse and had me get an echo. I was at a point where I couldn’t get out of bed without feeling like I was going to pass out. I. Her office my BP was 230/120. The echo showed severe regurgitation. Praise God she connected me to a good cardiologist who put me in the icu to figure out next steps and have tests (my cardiologist had wanted me to wait 2 weeks just to see him). Anyways, they got the BP regulated and the regurgitation lowered some to moderate. So no emergency surgery. I have clear arteries no dissection. My symptoms are what is driving me to get it done now. The palpitations, shortness of breath and bicuspid valve. my surgeon and I decided on an ON-X valve. I am a runner. (Needless to say this all explains why every time I ran a half marathon I ended up in a tent or hospital feeling like I was going to pass out). I am 48 with a 5 year old and 2 older boys and a granddaughter so I’m praying I’ll be around for a long time after. It just seemed to make sense to have it done while my heart is healthy rather than wait for it to just get worse bc it would definitely need to be replaced anyways. This is a bit of my story.

I’d love to hear how people prepared for this surgery. What things I might need at home to aid I recovery. I’m nervous about the INR but I’ll take it as it comes. And of course the pain is scary but I’m sure meds will help with that!

 

[pellicle]

Good morning
and welcome to your brief stay in the waiting room.

I hope your surgery goes well

I decided on an ON-X valve

now not that I'm trying to undermine On-X here, but I would ask why you've chosen that. If its because of the promise of some magic in the lowering INR levels (do you even quite know what that means?) then this is not a sound decision. If its for some other reason then I can't say, however there are things you may not be aware of, this is a post here and a discussion of why the lower INR is not a "one size fits all"

http://www.valvereplacement.org/for...e-of-onx-valve-and-problems-with-lowering-inr
and here is a discussion of why its important to NOT play hookey with your proper Anti Coagulation Therapy (the thinning of the blood, which by the way isn't thinned, its had coagulation time changed, even Doctors keep getting that simplification "dumbed down")

https://www.valvereplacement.org/th...-with-an-on-x-aortic-valve.888128/post-907882
lastly here is a clarification on the difference between makers claims and actuality ... who'd have thought On-X doesn't stack up

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
Myself I have an ATS valve. However knowing what I know now I'd be asking for a St Jude.

I’m nervous about the INR but I’ll take it as it comes.

its all pretty overblown and simple. There are folks here who can help you with questions on that when the time comes, but suffice to say if diabetics can manage a much more difficult juggling act with blood sugar testing 4 or more times a day then we can do the simpler one with once a week testing

This blog post is intended as a reference guide (not only as an introduction)

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
let me quote the opening

A patients perspective​

I've decided to put this page together because on looking around the internet I see heaps of rubbish, mis-information and myth out there for people who are on warfarin as an anticoagulant.

Firstly - the good news​

I wanted to say that managing my INR myself is incredibly simple and takes me about 5 minutes per week. Learning to use an INR monitoring machine is dead simple (a quick video provided) and (almost) any idiot can do it. If you buy strips online they cost so little that if you are an able bodied person you just couldn't consider doing it any other way.

By using the Coaguchek XS I have been essentially free to travel as I wish (moved from Australia for a year in Finland, traveled to the UK and other places) and more or less unbound in any way by being on anticoagulants.

As a bonus its been really cheap, with tests costing me less than $6 per test.

Best Wishes and fingers crossed for an uneventful procedure and recovery

 

[preciosa1974]

Hello! Thank you for this wealth of information. My surgeon first suggested the St Jude. May I ask why you think that might be better? I chose it partly bc of the INR as I have hopes to run a marathon. My surgeon was definitely open to either one. I guess I will need to do more research as the times is coming up!

 

[Superman]

Hello! Thank you for this wealth of information. My surgeon first suggested the St Jude. May I ask why you think that might be better? I chose it partly bc of the INR as I have hopes to run a marathon. My surgeon was definitely open to either one. I guess I will need to do more research as the times is coming up!

Your recommended therapeutic range for INR will not have any impact on your ability to run a marathon. My therapeutic range is 2.5-3.5. Seems to be viewed as high be recent standards. I’ve had St Jude valves for 32 years (aneurysm led to a second operation). I haven’t done a marathon, but I still run regularly and I have done a 25k. I’ve also hiked the Grand Canyon rim to rim. I was a pretty avid mountain biker when I was in my 20’s as well (I got my valve at 17).

Pretty sure we have members that have done marathons with all the various valve options. I also recall reading about a lady that climbed Mt Everest with a St Jude valve.

I’m not saying which valve to go with or what therapeutic range. That’s between you and your doctors. Just letting you know that St Jude wouldn’t stop you from running a marathon.

 

[Chuck C]

Welcome to the forum!

I chose it partly bc of the INR as I have hopes to run a marathon.

You don't need the lower INR range to run marathons. I have a St. Jude mechanical, put in place in February of 2021. My INR range is 2.0 to 3.0, which is standard for a mechanical valve in the aortic position.
As Superman indicated, a person can be on warfarin and be very active. I hike up steep mountains, run, bike and compete in Brazilian Jiu Jitsu, which involves grappling.

I chose mechanical due to my age of 53, and not wanting to get another OHS down the road. Once I made this decision, I had another consultation with my surgeon to decide between St. Jude and On-x. He recommended the St. Jude, due to its long track record and smaller size, but informed me that he would be happy to put an On-x valve in me instead, if that is what I preferred. However, he said that if I decided to go On-X, that he would not have me at the lower INR of 1.5 to 2.0, which they promote. He indicated that he and his colleagues were not convinced by the published study purporting to establish that this INR range is safe. Having read the paper myself a few times, I agree that it plays games with the data and does not convincingly support that a lower INR target is superior. I've posted on this previously.

I’d love to hear how people prepared for this surgery

I started the thread linked below about a month before my surgery, which you might find helpful. I cover some of decisions and thoughts that I was going through in the lead up to surgery, my recovery and hospital experience, as well as a few updates on the weeks and months following surgery. In that you are physically active and in my age range, there might be some parallels between your recovery and mine.


https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/

 

[pellicle]

Hi again

May I ask why you think that might be better? I chose it partly bc of the INR as I have hopes to run a marathon.

well the other two posters have covered the topic well, and so if I may say two things

1. the answers to that question are pretty clearly laid out in that set of posts (being that the INR lower theraputic range is a non-existant issue and the On-X does not confer any magic protection and that the claims of why it confers magic protection are debunked in those posts {did you read them?})
2. as you're totally new to this (not even post surgery yet) please take a moment to explore the idea that some of us have been there and done that and learned a lot in the time (in my case a repair, a homograft and then a mechanical over 3 surgeries starting since I was 10yo the last was 2011) that we've been involved with this area (including read many stories, read much research and been active).

So with only your best interests in mind (and no other interests) I would say if no other reason because the St Jude has the longest track record and that success in a choice like this should be a conservative choice not a "bet the farm on something new".

Lastly you talk about marathons, sorry, but that's nothing compared to this woman climbing Mt Everest on a St Jude mechanical valve (and of course on warfarin)

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
If you accept that you have a lot to learn I say with respect that perhaps listening to others who have decades of experience in the life after open heart surgery may be a good thing. You'll notice that so far nobody has said anything your surgeon disagrees with either.

Best Wishes

 

[ATHENS1964]

I had asked my surgeon thn St jude and he had agreed, but he told me that if he decided at the time of the surgery that he had to put someone else in, he would do it like this and otherwise he told me that all the companies were available. That's how it happened, he finally chose a LIVA NOVA Sorin at 27 mm.
I was impressed because my surgeon was trained at Cleveland and I thought he would have more affection for St jude or on-x.
He told me that he decided together with his assistant that it suited my anatomy better.
However, both he and my cardiologist pointed out to me that even if they say for this valve INR 1.5, not to follow it and be at 2.5

 

[Timmay]

I have an On-X and would NEVER use that lower INR range. Ever. Knowing what I know now, I wish I would have chosen a St. Jude’s valve. Don’t get me wrong - I am not saying anything negative about On-X. I’m sure it’s just fine. I just don’t appreciate the marketing and the company name changes … and therefore wish I would have supported St. Jude’s by using their valve. It’s also less bulky than the On-X which is rather large for what it is. Not that THAT means anything.

Anyhow - I manage my INR myself as do the above individuals. It’s THE way to go.

FWIW, I run a couple miles here and there, lift weights regularly, walk a couple miles every day with the dogs, work on cars, do my own home maintenance (up on ladders, etc), shoot clays and large caliber rifles, so on and so forth. Honestly, none of my life activities have changed. That said - I can’t just “go for a colonoscopy” like a normal person. But that’s the price to pay for not having multiple open heart surgeries (if I would have opted for a tissue valve).

To show you how much I reject the On-X 1.5 - 2.0 range … and how much I believe in managing my own INR, I tested at 2.3 this AM and immediately decided to adapt my dosage (short term) to get me back to 2.5-3.2.

 

[preciosa1974]

Hi again



well the other two posters have covered the topic well, and so if I may say two things

1. the answers to that question are pretty clearly laid out in that set of posts (being that the INR lower theraputic range is a non-existant issue and the On-X does not confer any magic protection and that the claims of why it confers magic protection are debunked in those posts {did you read them?})
2. as you're totally new to this (not even post surgery yet) please take a moment to explore the idea that some of us have been there and done that and learned a lot in the time (in my case a repair, a homograft and then a mechanical over 3 surgeries starting since I was 10yo the last was 2011) that we've been involved with this area (including read many stories, read much research and been active).

So with only your best interests in mind (and no other interests) I would say if no other reason because the St Jude has the longest track record and that success in a choice like this should be a conservative choice not a "bet the farm on something new".

Lastly you talk about marathons, sorry, but that's nothing compared to this woman climbing Mt Everest on a St Jude mechanical valve (and of course on warfarin)

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
If you accept that you have a lot to learn I say with respect that perhaps listening to others who have decades of experience in the life after open heart surgery may be a good thing. You'll notice that so far nobody has said anything your surgeon disagrees with either.

Best Wishes

Love this! And yes absolutely I’m here to learn!! I did spend several hours last night going through the links and research and posts. Granted, some of the wording is way over my head but I do see the studies showing what you have mentioned and I appreciate you taking the time to send all of that and chat with me. The more I thought about it (and believe it or not it actually scares me more the fda is involved so much in it!) I decided tomorrow I will send an email to my surgeon’s office to discuss it again. I look forward to learning more and going through these threads and links!

 

[preciosa1974]

I have an On-X and would NEVER use that lower INR range. Ever. Knowing what I know now, I wish I would have chosen a St. Jude’s valve. Don’t get me wrong - I am not saying anything negative about On-X. I’m sure it’s just fine. I just don’t appreciate the marketing and the company name changes … and therefore wish I would have supported St. Jude’s by using their valve. It’s also less bulky than the On-X which is rather large for what it is. Not that THAT means anything.

Anyhow - I manage my INR myself as do the above individuals. It’s THE way to go.

FWIW, I run a couple miles here and there, lift weights regularly, walk a couple miles every day with the dogs, work on cars, do my own home maintenance (up on ladders, etc), shoot clays and large caliber rifles, so on and so forth. Honestly, none of my life activities have changed. That said - I can’t just “go for a colonoscopy” like a normal person. But that’s the price to pay for not having multiple open heart surgeries (if I would have opted for a tissue valve).

To show you how much I reject the On-X 1.5 - 2.0 range … and how much I believe in managing my own INR, I tested at 2.3 this AM and immediately decided to adapt my dosage (short term) to get me back to 2.5-3.2.

Thank you for sharing all of this! It definitely seems I will be making a change in valves. I do like the longer track record.

 

[preciosa1974]

Welcome to the forum!


You don't need the lower INR range to run marathons. I have a St. Jude mechanical, put in place in February of 2021. My INR range is 2.0 to 3.0, which is standard for a mechanical valve in the aortic position.
As Superman indicated, a person can be on warfarin and be very active. I hike up steep mountains, run, bike and compete in Brazilian Jiu Jitsu, which involves grappling.

I chose mechanical due to my age of 53, and not wanting to get another OHS down the road. Once I made this decision, I had another consultation with my surgeon to decide between St. Jude and On-x. He recommended the St. Jude, due to its long track record and smaller size, but informed me that he would be happy to put an On-x valve in me instead, if that is what I preferred. However, he said that if I decided to go On-X, that he would not have me at the lower INR of 1.5 to 2.0, which they promote. He indicated that he and his colleagues were not convinced by the published study purporting to establish that this INR range is safe. Having read the paper myself a few times, I agree that it plays games with the data and does not convincingly support that a lower INR target is superior. I've posted on this previously.




I started this thread about a month before my surgery, which you might find helpful. I cover some of decisions and thoughts that I was going through in the lead up to surgery, my recovery and hospital experience and a few updates on the weeks and months following surgery. In that you are physically active and in my age range, there might be some parallels between your recovery and mine.


I started the thread linked below about a month before my surgery, which you might find helpful. I cover some of decisions and thoughts that I was going through in the lead up to surgery, my recovery and hospital experience, as well as a few updates on the weeks and months following surgery. In that you are physically active and in my age range, there might be some parallels between your recovery and mine.


https://www.valvereplacement.org/th...to-severe-and-need-to-make-a-decision.887879/

I spent a long time going through all of your posts last night . Incredibly helpful and encouraging. Thanks for sharing so much!

 

[pellicle]

decided tomorrow I will send an email to my surgeon’s office to discuss it again.

Just as advice, don't over research the problem, there is only so much human cab actually read and grok in the time you have.

Honestly you can't really go wrong with either of the above mentioned valves.

Your diligent engagement INR management will make the biggest difference.

Best Wishes

 

[Woodcutter]

Preciosa: I'm a life long runner. Been on warfarin for about 15 years and got a mechanical mitral valve (St. Judes) almost a decade ago. I've run plenty of marathons on warfarin (though none recently!) Ran a 25K and a half-marathon last month. Warfarin has never had any impact on my running. As time goes on, if you find yourself on any blood pressure and/or rate/rhythm control med's; well, many of them do have an impact on cardiac output.

Also, almost all of the longer runs I do these days are on trails. It is quite normal to take a spill, trip on a root, slip in the mud, get torn up from thorny plants, etc. Again, the warfarin has never been a problem with what I'll call the standard trail running cuts/bruises. (With a mitral valve, my target INR is 3.0).

 

[treichert0312]

My surgeon encouraged On-X and this was before I was on the site - I was symptomatic for a month and not clear about direction. There had been an open study about Eliquis in place of Warfarin related to On-X that had my interest. I was quite ignorant to the options and uninformed- really applaud you finding out beforehand.
On-X maybe is larger valve? Surgeon did a Nicks modification to fit valve properly - I am thus far satisfied customer - running minor amounts couple times a week, but ski season has started again & getting that Midwest snow under my feet.
Also - INR - International Normalised Ratio - talk about clearing things up! Lol. I have not done proper research on the whole clotting pathway to understand protein applications and how Warfarin impacts that pathway, but for my understanding it is a measure of clotting time. The artificial valve may cause clots to form around it and the clots can break off, get lodged elsewhere leading to strokes, but on the other hand need some clotting so bloody noses don’t turn fatal.
Have not studied all this as much as others on this forum but I am glad I finally went mechanical, found this website, and more comfortable with the Warfarin requirement. INR range 2-3 with no intention of going lower or any deviations off that course.
Good luck!

 

[pellicle]

My surgeon encouraged On-X

To be clear, it's not a bad choice, it's just that the hype isn't followed through in the data.
Equally I'm comfortable with my ATS too

 

[Chuck C]

Don’t get me wrong - I am not saying anything negative about On-X. I’m sure it’s just fine. I just don’t appreciate the marketing and the company name changes … and therefore wish I would have supported St. Jude’s by using their valve

I agree that the On-x is a fine valve. The data, comparing St Jude to On-x has them almost dead even in terms of performance. I also agree that they are aggressive in their marketing, something which I first learned about from my surgeon. I'm glad that you're using the INR range which has been demonstrated to have the fewest events. The main issue I see with On-x is their attempt to gain market share, by claiming a lower INR is possible with their valve. If one counts the severity of a nose bleed the same as that of a stroke, perhaps they are correct, but that is playing games by lumping "events" together and claiming that the lower INR had fewer events. As we have discussed, there were more strokes in the lower INR group. Not a good trade off.

 

[Chuck C]

Also, almost all of the longer runs I do these days are on trails. It is quite normal to take a spill, trip on a root, slip in the mud, get torn up from thorny plants, etc.

Thanks for sharing that you have had falls while running trails and that you came through just fine.

I actually just returned from a mountain trail run about 30 minutes ago; Mt Monserate. I discovered this trail about 8 months before my surgery and have run it several times since., before and after surgery. The trail is steep and, in runs prior to my surgery, I took two spills on my way down. Since surgery, I have been far more careful about each step, especially on the way down, and have not fallen since. But, I don't feel as though I am putting my life on the line with each run, and your shared experience would support this.

I have had some cuts in jiu jitsu, including a cut lip last Thursday, from a training partner who had long nails which needed a trim. The only real difference is that it takes longer to stop the bleeding from such an injury. Pressure caused the bleeding to slow way down, and when I got home I used a Styptic Pencil, which totally brought the bleeding to a halt. I've used it several times for small cuts- link below.

https://www.amazon.com/Clubman-Styp...cphy=9031520&hvtargid=pla-1280593189379&psc=1

 

[pellicle]

As we have discussed, there were more strokes in the lower INR group. Not a good trade off.

old saying here: "its easier for the body to replace blood cells than brain cells"

 

[vitdoc]

’d love to hear how people prepared for this surgery. What things I might need at home to aid I recovery. I’m nervous about the INR but I’ll take it as it comes. And of course the pain is scary but I’m sure meds will help with that!

I have had two St.Jude aortic valves starting in 1983 after a failed tissue valve. The second St Jude was placed in 2006 along with a repair of an ascending aortic aneurysm. So 39 years on warfarin. Lots of skiing, bike trips, years of basketball no major issues. I go for an INR of around 3 + or - .5
I dislike the promotion of the ON-X valve due the dubious claims made for low INR which may be parroted by physicians who don’t look closely at the data.
So whatever valve you go with don’t push for a dangerous low INR. I would rather bleed than have a stroke.
For me the surgical aspect was not fun. I am a lousy patient. But it is doable and not generally severely painful but annoying. Nothing special for home use just takes a bit of time.
Good luck.

 

[preciosa1974]

Thanks for sharing that you have had falls while running trails and that you came through just fine.

I actually just returned from a mountain trail run about 30 minutes ago; Mt Monserate. I discovered this trail about 8 months before my surgery and have run it several times since., before and after surgery. The trail is steep and, in runs prior to my surgery, I took two spills on my way down. Since surgery, I have been far more careful about each step, especially on the way down, and have not fallen since. But, I don't feel as though I am putting my life on the line with each run, and your shared experience would support this.

I have had some cuts in jiu jitsu, including a cut lip last Thursday, from a training partner who had long nails which needed a trim. The only real difference is that it takes longer to stop the bleeding from such an injury. Pressure caused the bleeding to slow way down, and when I got home I used a Styptic Pencil, which totally brought the bleeding to a halt. I've used it several times for small cuts- link below.

https://www.amazon.com/Clubman-Styp...cphy=9031520&hvtargid=pla-1280593189379&psc=1

Very helpful to have on hand! Thank you!