New Valve, New Me

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chebag

New member
Joined
Dec 20, 2021
Messages
4
Hello everyone,

First of all, thank you for this forum. I've been reading it for a while now and am grateful for everyone's dedication to the details. They've been tremendously reassuring.

Back on August 3rd, at the age of 30, I had my aortic valve replaced under bizarre circumstances. I'm thirty years old, have led an active lifestyle ever since I was young. At the age of 22, I was first diagnosed with BAV. The doctor, a grim reaper type, broke the news to me this way: "you've got some leaking." I've laughed about it ever since.

Besides semi-yearly check-ups and the occasional bout with light-headedness, I hadn't really faced any difficulties until the last few years. In 2019 or 2020, I was told that the insufficiency of my valve had progressed to the point that I would need to give up weight-lifting and that sort of thing.

Fast-forward to this spring. All the way back in April or May I had all the worrisome symptoms that would point to endocarditis but none of the knowledge to prevent potential disaster: fatigue, lightheadedness, sprouting fevers left and right. I was in and out of urgent cares, struggling to think straight, popping ibuprofen like they were candy, and generally worrying my loved ones. I told doctors about my BAV, but no one put it together: people speculated I had COVID, an ear infection, and I even had my appendix taken out in June, only to have the fevers return a week and half later. My girlfriend had strep in February or March, and I now wonder if that's what started the trouble.

It wasn't until late July that a PCP had the wherewithal to order a blood culture, at which point they found Strep veridans in my bloodstream. Not long after that, I was diagnosed with endocarditis and a potential aneurysm. I spent 18 days in the hospital: 11 before the surgery, and seven after. As for the valve replacement: I remember the surgeon putting his hand on my shoulder on the operating table and saying "I'm going to take care of you." When I woke up, I was informed they'd almost had to get me a transfusion, and that I'd also evaded the aneurysm, and that I'd been given the largest mechanical valve they had: 25mm. Who knows if that's true, or they were just trying to flatter me. At my follow-up, they told me my heart function was outstanding. Otherwise, I'm waiting for my insurance company to approve my at-home testing kit, and have generally been solidly in my INR goal: 1.5-2.

The source of the infection remains something of a mystery. A favorite question I get from doctors is "have you been in contact with any farm animals," to which I've wanted to quip "I consider several of them friends." I've been encouraged by my surgeon and others "not to worry," as I'm otherwise healthy... nonetheless, I continue to worry, as I was told the very same thing back in the spring. I would describe my anxiety and depression post-surgery as tempered: I'm laying on the gratitude gravy pretty thick, and understand that anxiety, as long as I don't let it get off the leash, can be useful.

I know to be exceedingly careful should any fevers pop up. Mostly I'm just tired: my ability to control for frustration and irritability seems to come and go, as does my focus. I'm a teacher, and went back to work too quickly (less than three weeks after the replacement), and the semester was a tremendous slog. I'm looking forward to the upcoming break, and I'm trying also to focus on cutting back on my consumption of a certain green illicit substance.

I've experienced some lightheadedness, left-sided chest pain, congestion and fatigue (no fever) in the last few days, and am wondering if I should cancel my holiday travel plans. I've got several dental caries that are going to be taken care of in a couple of weeks, and I'm planning on getting antibiotics beforehand, obviously, so that provides me some reassurance.

Otherwise, I just wanted to say hello and to thank you all.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,294
Hi Chebag and welcome to the forum!

I'm waiting for my insurance company to approve my at-home testing kit,
Excellent! Home testing has been shown to drastically cut down on clotting and bleeding events.

have generally been solidly in my INR goal: 1.5-2.
So, that tells us that you received the OnX valve. You might want to read up on whether it is better to target 1.5-2.0 or 2.0-2.5. There is some controversy on this one, as there are more clotting events in the 1.5-2.0 range, even in the trial which gave the green light for this range. In any case, if you do decide to stick with this range, be sure to take your daily baby aspirin, which is required for the lower INR range.

I'm trying also to focus on cutting back on my consumption of a certain green illicit substance.
No worries, despite what myths you might have heard, you can eat all the spinach you want while on warfarin, just keep your INR in range. :) :ROFLMAO:
 

Seaton

Well-known member
Joined
May 13, 2015
Messages
442
Location
London, UK
Greetings and welcome to the forum @chebag. Thanks for the introduction and write-up.

Sorry to hear about your endocarditis experience, but very glad to hear you finally got the urgent treatment you required!

Sub-acute endocarditis is the ruffian on the stair, for sure. So often missed in initial diagnosis—and with serious consequences.

I'm happy you're on the mend (a day at a time) and to see you posting here.

Best wishes to a continuing good recovery. ☀
 
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pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
Hi and welcome

It wasn't until late July that a PCP had the wherewithal to order a blood culture, at which point they found Strep veridans in my bloodstream.
just thought I'd let you know that its not a super uncommon strep

and is indeed one of the causes for endo


anyway, pretty much its usually easy to treat with antibiotics (and please, do follow the whole course).

Sorry about the rocky road, but at least you seem to be on the mend now.

Otherwise, I'm waiting for my insurance company to approve my at-home testing kit, and have generally been solidly in my INR goal: 1.5-2.
myself it sounds like you have the On-X valve and if I was you I'd steer it up a little to be aiming to always a bit over INR of 2

The On-X protocol can lead you to have issues if you're active

note that wasn't the valve, just the blind adherence to the lower INR protocol.

also DO NOT make the mistake of disrespecting your relationship with warfarin

its easy to stay in range and easy to test, but do not pretend you won't get bitten by it if you don't follow the rules.

I don't know if you've seen it, but my blog may be a helpful reference on INR management

and keep away from grapefruit


FWIW I've got a 25mm too :) but I'm not a big guy.

Best Wishes
 
Last edited:

chebag

New member
Joined
Dec 20, 2021
Messages
4
Thanks for the replies! I refuse to get into a valve-measuring contest... I also refuse to clarify if it's spinach or something skunkier I'm talking about!

I'm on top of my INR management, and I'll talk to my cardiologist about clotting. I know it's better to be over 2 than under 1.5, so I'm going to try to keep it up, if you will.

Okay, enough wordplay for today!
 

jlcsn2015

Liborio
Joined
Sep 21, 2015
Messages
219
Location
Toronto
Otherwise, I'm waiting for my insurance company to approve my at-home testing kit, and have generally been solidly in my INR goal: 1.5-2.
Hi!, i also got an OnX back in 2015 and did start having in mind the 1.5 -2 INR target range, did so for 1 year but came to learn the INR jumps up and down regardless of how regular is the kind of things i ate; and came to feel better moving the target range to 2 - 2.5, there " I " feel safe and it works for " Me " . I also tested every 2 weeks for a while but when the "Virus Landed " started to test weekly.
 

vitdoc

VR.org Supporter
VR.org Supporter
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Apr 16, 2017
Messages
265
Location
Southern Ca.
The source of the infection remains something of a mystery. A favorite question I get from doctors is "have you been in contact with any farm animals,"

I don’t think there is much mystery in getting endocarditis from strep viridans.
This bacteria is often found in the mouth. So any manipulation of the gums like flossing or heavy duty brushing can release bacteria into the blood stream.
With a damaged valve there is turbulence and a propensity for bacteria to enter the valve tissue causing an infection of the valve. This can happen on artificial valves also. So no real mystery. Agree also in keeping the INR over 2. The downside to a low INR is far worse then a mild elevated INR.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,363
Location
Queensland, OzTrayLeeYa
I don’t think there is much mystery in getting endocarditis from strep viridans.
This bacteria is often found in the mouth. So any manipulation of the gums like flossing or heavy duty brushing can release bacteria into the blood stream.
thanks for that, I wonder if my reply was inappropriately pitched. I would expect (reading that) the answer is more obvious than what I said.

:)
 

slipkid

Well-known member
Joined
Jun 12, 2014
Messages
349
Location
Schwenksville, PA, USA
Hi!, i also got an OnX back in 2015 and did start having in mind the 1.5 -2 INR target range, did so for 1 year but came to learn the INR jumps up and down regardless of how regular is the kind of things i ate; and came to feel better moving the target range to 2 - 2.5, there " I " feel safe and it works for " Me " . I also tested every 2 weeks for a while but when the "Virus Landed " started to test weekly.
Very similar to me. Got the On-x in 2014. The 1.5-2.0 range was not approved for America yet (only Europe). Recommended USA range was 2.0-2.5 at the time. They lowered that as you said to 1.5-2.0 which is controversial in itself. I prefer to stay 2.0 to 2.5 to have some wiggle room but take comfort in that I don't have to freakout if I test like 1.7 occasionally.
 

chebag

New member
Joined
Dec 20, 2021
Messages
4
Thanks again for all the valuable perspective. I'll talk to my cardiologist about bumping myself up over 2.

Coagucheck is in the mail. Getting "trained" on Monday. Already hit my deductible because of the surgery, so I'm not paying a cent for the thing. Silver linings!
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,294
Very similar to me. Got the On-x in 2014. The 1.5-2.0 range was not approved for America yet (only Europe). Recommended USA range was 2.0-2.5 at the time. They lowered that as you said to 1.5-2.0 which is controversial in itself. I prefer to stay 2.0 to 2.5 to have some wiggle room but take comfort in that I don't have to freakout if I test like 1.7 occasionally.
I think this is a wise approach. It is always good to have some level of safety margin around the range. We do go out of range from time to time and your hypothetical occasional dip to INR 1.7, which can be quickly corrected when testing at home, is probably going to be just fine.

On the other hand, given that most people do not home test, but test at the lab every 4-6 weeks, it would appear to be especially risky for those individuals, if one keeps a range of 1.5-2.0, given the delay between tests. If one falls below range, say to 1.2-1.4, it could be a long time spent at this range before the next lab visit to make adjustment to dose. It should be noted that the study that On-X did to support the 1.5-2.0 range was done with home monitoring, and also aspirin.

I had a consult with my surgeon to decide between the On-X or the St Jude mechanical valve. He indicated that if I chose to go with the On-X that he would not have me at 1.5-2.0 INR target range, as he and many of his colleagues remain totally unconvinced by the study to promote this range, and would have me stay over 2.0.
 

AZATADINE

Active member
Joined
Aug 30, 2021
Messages
29
I'm on warfarin for the initial 3 months post aortic valve replacement with a tissue valve. After a few rough weeks post release in terms if trying to get my INR within the 1.8 - 2.5 range, its now pretty settled and I'm taking 4 mg per day.

This might be a silly question but now that I have some experience with warfarin and INR, what is the big driver to have an INR of 1.5 - 2 rather than say 1.8 - 2.5 or 2 - 3? Seems like it might be hard to achieve consistently and would it really be worth the risk?

Any time my INR dropped below 1.8 in the first couple of weeks, I opted for a shot of Clexane as I didn't really feel comfortable below 1.8.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,294
This might be a silly question but now that I have some experience with warfarin and INR, what is the big driver to have an INR of 1.5 - 2 rather than say 1.8 - 2.5 or 2 - 3
That’s an excellent question. I share the view of my surgeon that it is marketing.

Let me first say that all indications are that On-X is an excellent mechanical valve. In head-to-head comparisons, it has matched the performance of the St. Jude.

On-X versus St Jude Medical Regent mechanical aortic valve prostheses: early haemodynamics | Open Heart

However, the St. Jude enjoys much larger market share, having been around for decades and with 30-years of published data.

DEFINE_ME

To my knowledge it is the only valve that has 30-year outcome data. The 30-year freedom from reoperation rate was 92%.

If On-X Life Technology can come up with a theoretical edge over the St. Jude, it should be able to have a good marketing argument to choose the On-X over the St. Jude or other mechanical valves. So, the maker of the On-X valve commissioned a study to see if (* or maybe better stated, “to try to prove that”) it was safe to keep INR at 1.5-2.0. Probably the biggest fear of those who choose a mechanical valve is fear of having a bleeding event from the anti-coagulation. The hypothesis would be that keeping a lower INR, if it could be done safely, would lower the risk of having a bleeding event.

In the study, they did find that those who were in the test arm, with INR of 1.5 to 2.0, had fewer events; fewer bleeds. But, as one might expect with keeping such a low INR, they had more strokes. A question I would ask is whether someone would rather have a bleeding event or a stroke? Nevertheless, the number of events was reasonable enough for this range to be approved by the FDA for the On-X valve.

Keep in mind the following:

-those in the trial home tested frequently

-those in the trial took aspirin

-those in the trial had been trained in properly home testing.

In the real world, most do not home test, but get tested at the lab every 4-6 weeks. Studies have shown that home testing drops events drastically. A study is a controlled situation with a strong emphasis on testing regularly, testing correctly and keeping on protocol. In the real world, folks tend to be a little less fastidious when left to their own devices.

There have been large studies to demonstrate that the INR range of 2.0 to 3.0 is a range with the fewest events and the lowest rate of mortality. We have seen on at least two occasions, members of this forum report major issues with blood clotting when trying to keep the On-X of INR target of 1.5-2.0. Many experts, including my surgeon, do not agree that keeping an INR of 1.5-2.0 is safer, and rather, believe that it is far more risky.

Remember, if you target an INR of 1.5-2.0 and it results in a stroke, you are the one that has to live or perish with that outcome, not On-X Life Technologies, not your cardiologist and not your surgeon. It is something that each individual has to decide, but there seems to be a strong argument to be made to keeping INR over 2.0
 
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