On-X valve 6 weeks later...

[treichert0312]

Hello, Just found this forum when I was googling for mechanical heart valve and skiing. Lotta information and thought I could contribute a bit. I has first surgery at age 11, for congenital subaortic stenosis - extra fiber in the ventricle. In 2014 had my bicuspid aortic valve changed out with a bovine valve, but that wasn't very effective so doctor selected porcine valve with aortic root.
That worked really well for 8 years without issue. I was active, joined ski patrol, and had no worries about my valve.
In late May 2022 I had done the long bike ride to work for National Bike to Work Day, did some mulching for community pool, ran in a 10K on Saturday, yard work on Sunday, another 42 mile bike ride on Monday, and Tuesday after work went to the ER with chest pain. I was also doing daily plank for 2 minutes, on forearms and toes, and had this very odd whooshing in my ears and upper chest. I was released from ER but had similar complaint the next day, and then they kept me for 5 days and ran the tests. The TTE, TEE and cardiac cath indicated leaflet failure.
I left the local hospital and returned to the doctor that had done the original install. Fortunately the 10 year warranty was still good lol. He had since semi-retired but recommended Dr. Fukuhara and a mechanical On-X valve. Originally we had planner TAVR replacement when the pig valve failed, but because this was not a stenotic failure and an additional root without structure, the TAVR would not be viable.
I had the surgery 7:30 am on Fathers Day, was released by Friday that week, and now 6 weeks later good to return to work. My chest is still sore but getting better every day. Warfarin seems stable with minor hiccups to the INR, but everything is in the 2-3 range so far. Walking a couple times every day, and doctor says light running can now be considered.
Planning to be on the bike trails again come October, then sounds like I may have a wide open ski season.
The idea of the On-X and the reduced INR seemed like a really good idea but that is not an option until 90 days anyways, and a couple threads seem to indicate that may be unnecessary risk. There is a clinical study available, Eliquis v Coumadin, that I could sign up for. Then I could eat as much leafy green vegetable as I want - not a big win. Also can drink alcohol without INR fear, but I don't drink anyway so not a big attraction.
I'll check the other threads but wanted to see what you thought about the anticoag options and the new clinical trial.

 

[pellicle]

Hey and welcome

Then I could eat as much leafy green vegetable as I want

But you can anyway...

I find that eliquis trial interesting, but as it's rather expensive I prefer the tried and true of warfarin

Best Wishes

 

[JedC]

I'm part of the trial through Johns Hopkins, but was randomized to Warfrin. Just call me part of the "control" group. The best part of Warfrin - no kale allowed!

 

[Chuck C]

The best part of Warfrin - no kale allowed!

I assume that you're just joking and are using your warfarin as an excuse not to eat kale

As we often get readers who might not be in on all of our inside jokes here, just to be clear, you can eat kale on warfarin. I eat large kale salads often, as well as other leafy greens. Yesterday was typical, eating 2 large salads. There are now published studies that eating plenty of vitamin k rich foods actually helps us maintain more consistent INRs.

 

[Chuck C]

Welcome to the forum and glad that you found us!

Thanks for sharing your story.

In 2014 had my bicuspid aortic valve changed out with a bovine valve, but that wasn't very effective so doctor selected porcine valve with aortic root.
That worked really well for 8 years without issue.

If my math is correct, you were about 46 in 2014 when you had your tissue valve. Getting only 8 years is not uncommon when people get tissue valves under the age of 50, which is why the guidelines do not recommend it. I was 53 at the time of my surgery and was told by two top surgeons that at age 53 I should expect about 10 years.

Originally we had planner TAVR replacement when the pig valve failed, but because this was not a stenotic failure and an additional root without structure, the TAVR would not be viable.

Thanks for sharing this. Many choose a tissue valve believing that when it wears out that they can get a TAVR. As you demonstrate, it is far from certain that TAVR will be an option for the next procedure. It depends on many factors and they evaluate you when the time comes. For my 2 cents, I'd say that it may have been good fortune that you were not eligible for TAVR. At your still young age of 54, it is unknown how long TAVR valves will last, but they are not expected to last as long as standard tissue valves. This could have put you in a bad position when the TAVR vavle eventually failed, likely between the age of 59 and 62.

The idea of the On-X and the reduced INR seemed like a really good idea but that is not an option until 90 days anyways, and a couple threads seem to indicate that may be unnecessary risk.

I would agree that going with the lower INR of 1.5-2.0 is an unnecessary risk. There are a few accounts of bad outcomes from members on this forum who did the lower INR. I'd suggest giving a good read to the several threads covering that topic here on the forum before deciding to switch to the lower INR. I have a St Jude and keep my INR between 2.0-3.0. I'm very active, doing jiu jitsu and running. You can be very active on warfarin, you just need to be sensible about it. Maybe give up the machete juggling, for example.

Then I could eat as much leafy green vegetable as I want - not a big win.

I hate to break the news to you, but you can eat lots of leafy greens on warfarin. I do and have very stable INR. Most here on warfarin will tell you that you can eat whatever you want, just check your INR regularly and make adjustments as needed. However, if you want to use the warfarin as an excuse with your significant other to not eat greens, nobody here will snitch on you. Just make sure she does not know your VR password,

Please keep us on your recovery. It is a journey for sure.

 

[JedC]

I assume that you're just joking and are using your warfarin as an excuse not to eat kale

As we often get readers who might not be in on all of our inside jokes here, just to be clear, you can eat kale on warfarin. I eat large kale salads often, as well as other leafy greens. Yesterday was typical, eating 2 large salads. There are now published studies that eating plenty of vitamin k rich foods actually helps us maintain more consistent INRs.

Shhh, don't tell my wife . . .

 

[Chuck C]

Shhh, don't tell my wife . . .

You're secret is safe here. It's all part of the VR oath, along with the secret handshake and all that.

I'll trust that you won't tell my wife that there is not really a study that shows that regular intimacy has been proven to keep INR in range.

 

[Timmay]

On-X aortic valve guy here too. 9 weeks and counting.

I will NEVER EVER use that lower INR range. No point in risking it. Strokes are no joke.

I follow what I believe Chuck said a long time ago. I’m on a seefood diet. I see food. I eat it. I eat plenty of greens.

My list for “stay away from” because Warfarin is relatively small: Cranberry Juice, Cod Liver Oil.

That said - I do eat pretty darn consistent throughout the week.

Early AM is coffee with some FooFoo tastey creamer. Lol.

Breakfast is Cheerios with 2% Grassfed cow milk topped with half a banana.

Lunch is usually a sardine sammich on pumpernickel with dill and onion. And some decaf iced tea.

Snack is the other half of banana. Maybe some fig newtons.

Dinner is the variable of my day. But, generally speaking, my wife and I don’t eat red meat or pork. So it’s usually chicken, ground Turkey, fish, or a veggie dinner. So figure something like turkey tacos, a turkey dinner, turkey sausages topped high with sauerkraut, grilled chicken, baked chicken of various seasonings, etc.

I do have the amazing steak or hamburger once or twice a month when my lady is off doing her thing.

Snack in the evening is usually 2 squares of 90% dark chocolate. Although I have been known to have a scoop of ice cream from time to time … or some pretzels … or blue corn tortilla chips. Mmmmmmm.

 

[Timmay]

I'll trust that you won't tell my wife that there is not really a study that shows that regular intimacy has been proven to keep INR in range.

You had me laughing out loud to that one Chuck!

 

[Jennie]

I didn't know that they had a study of eliquis vs. warfarin! I knew that it might be possible in the future to make the switch to eliquis, so this is interesting. I think it would make me a little nervous, though.

I got the CryoLife SynerGraft aortic homograph (human donor, washed of its cells) with root/graft, at Mayo Clinic in 2002. We realized that was calcifying, stenotic, in addition to the regurgitation, at my echo in February 2021. Then in October 2021, a leaflet suddenly BROKE, throwing me into Congestive Heart Failure. (I thought it was pneumonia, with the breathing issues and the sound of fluid in my lungs.) I had my second AVR at Johns Hopkins in November, at age 54. I was tempted by a TAVR, but that would only give me maybe another 10 years, and what else would break, and when, and how catastrophic?? And that would just add to the calcified mess in there, and the surgery, already very complex and risky, would be even more so, and I'd be even older. So I got the On-X with conduit. Hoping this is my last valve.

So I'm new to warfarin. At three months, we started lowering it. 1.8 is the ideal target.. But generally, at least in the last month or two, I'm in the low 2's. And that's where I personally like it.

Every week I buy a bag of spinach. If I haven't had much in the way of veggies for a night or two, I'll munch on a handful.

I didn't realize cranberry juice was a problem. Grapefruit juice is off-limits.

 

[Protimenow]

Jennie:
There's no good reason to aim for an INR of 1.8, other than helping On-X differentiate their valve from the other available valves. Moving from 1.8 to a range of 2.0-3.0 will make NO difference in your quality of life, but will help to prevent bad outcomes. Also, there have been document cases where INR that low, in people with On-X valves HAVE had negative consequences.
Even if I had an On-X valve in my chest I, personally, would aim for an INR of AT LEAST 2.0.

---

I eat dried cranberries with my morning oatmeal and haven't seen any change in INR.

But one thing that we all MUST avoid is grapefruit - fresh or juice. It's bad stuff.

 

[treichert0312]

I'll trust that you won't tell my wife that there is not really a study that shows that regular intimacy has been proven to keep INR in range.

Yes I'll be referring to that study! Great to know! Thanks for the tip.

 

[treichert0312]

I didn't know that they had a study of eliquis vs. warfarin! I knew that it might be possible in the future to make the switch to eliquis, so this is interesting. I think it would make me a little nervous, though.

I got the CryoLife SynerGraft aortic homograph (human donor, washed of its cells) with root/graft, at Mayo Clinic in 2002. We realized that was calcifying, stenotic, in addition to the regurgitation, at my echo in February 2021. Then in October 2021, a leaflet suddenly BROKE, throwing me into Congestive Heart Failure. (I thought it was pneumonia, with the breathing issues and the sound of fluid in my lungs.) I had my second AVR at Johns Hopkins in November, at age 54. I was tempted by a TAVR, but that would only give me maybe another 10 years, and what else would break, and when, and how catastrophic?? And that would just add to the calcified mess in there, and the surgery, already very complex and risky, would be even more so, and I'd be even older. So I got the On-X with conduit. Hoping this is my last valve.

So I'm new to warfarin. At three months, we started lowering it. 1.8 is the ideal target.. But generally, at least in the last month or two, I'm in the low 2's. And that's where I personally like it.

Every week I buy a bag of spinach. If I haven't had much in the way of veggies for a night or two, I'll munch on a handful.

I didn't realize cranberry juice was a problem. Grapefruit juice is off-limits.

I guess the mechanical valve should last. I had the same issue - the broken leaflet, and they diagnosed that as congestive heart failure, but I was able to carry on for about a week or two before getting into the ER and helping accelerate the surgery schedule. I did not have your symptoms of fluid in lungs and breathing issues - just had the chest tightness being main symptom.
The first stop into the ER, when I told the doctors that I had the porcine valve, everybody was asking me why did you not go mechanical? They were mystified. At the time in 2013 it had seemed like a good decision, but just being on this site and reading all these posts, and understanding there would be another surgery after the TAVR - I am glad I got the mechanical valve now rather than TAVR then another SAVR.

 

[treichert0312]

On-X aortic valve guy here too. 9 weeks and counting.


Early AM is coffee with some FooFoo tastey creamer. Lol.

Breakfast is Cheerios with 2% Grassfed cow milk topped with half a banana.

Lunch is usually a sardine sammich on pumpernickel with dill and onion. And some decaf iced tea.

Snack is the other half of banana. Maybe some fig newtons.

Dinner is the variable of my day. But, generally speaking, my wife and I don’t eat red meat or pork. So it’s usually chicken, ground Turkey, fish, or a veggie dinner. So figure something like turkey tacos, a turkey dinner, turkey sausages topped high with sauerkraut, grilled chicken, baked chicken of various seasonings, etc.

I do have the amazing steak or hamburger once or twice a month when my lady is off doing her thing.

Snack in the evening is usually 2 squares of 90% dark chocolate. Although I have been known to have a scoop of ice cream from time to time … or some pretzels … or blue corn tortilla chips. Mmmmmmm.

Yes! just three weeks behind!

 

[pellicle]

It's all part of the VR oath

hey, you're not supposed to talk about VR Club

 

[pellicle]

I got the CryoLife SynerGraft aortic homograph (human donor, washed of its cells) with root/graft

quite interesting ... in Australia we use either cryo preserved or (in the past) antibiotic preserved and its living tissue. I got one of those in 1992 and it was still going (although calcified) in Nov 2011 when they swapped out my Aorta (with its 5.6cm aneurysm) with an ATS valve and Dacron Graft

Just FYI a study from the hospital that did my procedure

J Heart Valve Dis. 2001 May;10(3):334-44; discussion 335. Related Articles, Links The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements. O'Brien MF, Harrocks S, Stafford EG, Gardner MA, Pohlner PG, Tesar PJ, Stephens F. The Prince Charles Hospital and the St Andrew's Hospital, Brisbane, Queensland, Australia.

BACKGROUND AND AIM OF THE STUDY: The study aim was to elucidate the
advantages and limitations of the homograft aortic valve for aortic valve
replacement over a 29-year period.

RESULTS:
For all cryopreserved valves, at 15 years, the freedom was
* 47% (0-20-year-old patients at operation),
* 85% (21-40 years),
* 81% (41-60 years) and
* 94% (> 60 years).

So as it happened I was part of the 21-40 group

 

[pellicle]

I had the same issue - the broken leaflet, and they diagnosed that as congestive heart failure

just out of interest, this was on a bioprosthesis not a mechanical valve where a leaflet broke? (tore?)

 

[KLS39]

Hello, Just found this forum when I was googling for mechanical heart valve and skiing. Lotta information and thought I could contribute a bit. I has first surgery at age 11, for congenital subaortic stenosis - extra fiber in the ventricle. In 2014 had my bicuspid aortic valve changed out with a bovine valve, but that wasn't very effective so doctor selected porcine valve with aortic root.
That worked really well for 8 years without issue. I was active, joined ski patrol, and had no worries about my valve.
In late May 2022 I had done the long bike ride to work for National Bike to Work Day, did some mulching for community pool, ran in a 10K on Saturday, yard work on Sunday, another 42 mile bike ride on Monday, and Tuesday after work went to the ER with chest pain. I was also doing daily plank for 2 minutes, on forearms and toes, and had this very odd whooshing in my ears and upper chest. I was released from ER but had similar complaint the next day, and then they kept me for 5 days and ran the tests. The TTE, TEE and cardiac cath indicated leaflet failure.
I left the local hospital and returned to the doctor that had done the original install. Fortunately the 10 year warranty was still good lol. He had since semi-retired but recommended Dr. Fukuhara and a mechanical On-X valve. Originally we had planner TAVR replacement when the pig valve failed, but because this was not a stenotic failure and an additional root without structure, the TAVR would not be viable.
I had the surgery 7:30 am on Fathers Day, was released by Friday that week, and now 6 weeks later good to return to work. My chest is still sore but getting better every day. Warfarin seems stable with minor hiccups to the INR, but everything is in the 2-3 range so far. Walking a couple times every day, and doctor says light running can now be considered.
Planning to be on the bike trails again come October, then sounds like I may have a wide open ski season.
The idea of the On-X and the reduced INR seemed like a really good idea but that is not an option until 90 days anyways, and a couple threads seem to indicate that may be unnecessary risk. There is a clinical study available, Eliquis v Coumadin, that I could sign up for. Then I could eat as much leafy green vegetable as I want - not a big win. Also can drink alcohol without INR fear, but I don't drink anyway so not a big attraction.
I'll check the other threads but wanted to see what you thought about the anticoag options and the new clinical trial.

Welcome to the forum. Glad your recovery is going well.

I also have an On-x valve (3/5/2021). I was content to have my INR between 1.5 to 2.0 until I found this forum. I now find it aggravating to have such a low and small range. I'll be having the cardiologist change it in my records at my next appointment. I test at home now on the CoagSense machine. Even if I get a result of 1.7 I know it would actually be a 2.0 - 2.2 at the lab I originally used and now only go to for a comparison a few times a year when also checking on my thyroid. My CoagSense has been consistently lower than the lab but that works to my advantage since the cardiologist's office gets "worried" when I am well over 2.0. I've actually finally convinced the nurse who calls with my dose that I want to be at a 2.0 (on my CoagSense) so I'll actually be closer to 2.5. I've also been known to adjust my dose and tell her the next week.

Best of luck to you!!

 

[Jennie]

Jennie:
There's no good reason to aim for an INR of 1.8, other than helping On-X differentiate their valve from the other available valves. Moving from 1.8 to a range of 2.0-3.0 will make NO difference in your quality of life, but will help to prevent bad outcomes. Also, there have been document cases where INR that low, in people with On-X valves HAVE had negative consequences.
Even if I had an On-X valve in my chest I, personally, would aim for an INR of AT LEAST 2.0.

---

I eat dried cranberries with my morning oatmeal and haven't seen any change in INR.

But one thing that we all MUST avoid is grapefruit - fresh or juice. It's bad stuff.

I agree. Even if I can allegedly lower the INR a smidge, it's not like I feel the need to do so. Thank @Protimenow. I've read a lot of your posts in the past!

 

[Jennie]

I guess the mechanical valve should last. I had the same issue - the broken leaflet, and they diagnosed that as congestive heart failure, but I was able to carry on for about a week or two before getting into the ER and helping accelerate the surgery schedule. I did not have your symptoms of fluid in lungs and breathing issues - just had the chest tightness being main symptom.
The first stop into the ER, when I told the doctors that I had the porcine valve, everybody was asking me why did you not go mechanical? They were mystified. At the time in 2013 it had seemed like a good decision, but just being on this site and reading all these posts, and understanding there would be another surgery after the TAVR - I am glad I got the mechanical valve now rather than TAVR then another SAVR.

I'm with you on that one! The TAVR is a good option for some folks, but for a re-op, not so sure. My first surgeon (20 years ago), my current surgeon, and current cardiologist ALL recommended the mechanical in my case. "We wouldn't have let you make the wrong decision".

And my cardiologist (big dog at Johns Hopkins) agreed with me that the tissue was a good choice for my first surgery. Avoided 20 years of warfarin risk.

I went to Urgent Care (for my "pneumonia"), they ran me out to the ER, then was hospitalized for three days for "observation". Had an echo, saw a local cardiologist, then sent me home. They had no idea that my valve had failed.