On-X and Lower INR Protocol

[Guest]

I'm looking for experiences with the On-x aortic valve. Are any of you on the new lower INR protocol (1.5-2)? Does it seem like the Cardiology professionals are embracing it? I understand that in the grand scheme of things, the difference between 1.5 and 2.5 is really trivial and there is minimal evidence to prove there is an increased bleeding event risk when already at these relatively low levels. Unfortunately, with my career as a Firefighter, any anti coagulation scares our Occ Med doctors. If I can keep my levels in this lower range I'm hopeful, based on recent conversations with them, I can return to full duty after surgery. I'm currently working on getting it in writing (easier said than done). As a 39 y/o very active person, I feel the mechanical valve is the best long term choice for me. I'm not scared of Coumadin, but so many are; including many highly educated medical professionals. It's mind boggling how many misconceptions are out there. As a Paramedic myself, I have a heightened sense of awareness when a patient (especially trauma or stroke) is on anticoagulation, but I don't think people need to walk around with bubble wrap on their head. I'm optimistic that the On-x could be the choice for me. I am prepared to shop for Ross surgeons or take my chances with tissue if that's what it takes to "stay on the streets", but love the idea of a potential life long fix.

Also, if anyone has good links to peer reviewed studies that help support the case that Coumadin doesn't make you a ticking time bomb, that would be greatly appreciated, too...just in case I need to do some educating.

Thanks!

Eric

 

[JulienDu]

Hello
I work in very dangerous fields ( not as dangerous as yours too ). I build log homes, so I have to work with chainsaws most the day, on top of walls, sometimes with only one leg. I also do a lot of bush works and the risk of being hurt is important. So I can totally understand your worry and your decision is even harder than mine because, in addition to taking risks you also have to take care of people.

My decision was Mechanical after weeks of torturing myself. My surgeon thought that for a very healthy and young patient, a mechanical would be the best. I have listened to many wise people on this forum and I did try to read many researches even though I do not have any education. Future will tell if I was right.

Now, as for the INR management, I would not focus too much on what type of valve because many studies have shown that the difference in lower INR range is barely relevant among the last generation valve.

Onyx is the only valve that asked for the FDA approval for the 1.5-2 INR range. But remember that this approval was given so long as a 81mg dose of aspirin was also taken. And if you talk to AC therapy expert ( like Pellicle ) on this forum, they will tell you that staying between this narrow range will be very hard.

Here is one of the study that shows the possibility of going into a lower INR with ONYX : http://www.ncbi.nlm.nih.gov/pubmed/24512654 ( 375 patients and aspirin was added to the 1.5-2 inr sub group )

Their conclusion is this : 1.48% risk of major bleeding / year and 1.32% risk of minor bleeding / year ( doing better than the 2.0-3.0 range) No increase of Thrombosis.

Another study look at aiming a 1.8-2.5 INR range with St Jude standard and Medtronic Hall ( not the most recent valve ) http://www.ncbi.nlm.nih.gov/pubmed/12970212

3300 patients in this study. No aspirin added. Bleeding complications was 0.56 percent in the lower INR range. No increase of Thrombosis.

Other studies I have read :

- http://www.ncbi.nlm.nih.gov/pubmed/20598989 : 1.5-2.5 INR with any kind of Bileaflets valve and no aspirin showed very decent results. No increase of Thrombosis.

- http://www.ncbi.nlm.nih.gov/pubmed/16352127 : 1.5-2.5 INR with the ATS shows very good result with this valve. ATS seems to be marketing their pivot system that is less agressive on the blood flow rather than the carbon they use. No increase of Thrombosis.

Now I just wanted to show those studies because you might not end up with an Onyx and you might be disappointed ( like me) at first but your surgeon also take into account the fitting of the valve and the Onyx has more fitting issues than the ATS or the ST Jude Regent for example. I am not also recommending to aim low for INR, i was just showing other valve capacity through those studies and there are many more around.

As for the Ross, I would hate it because I do not like the idea of removing a good valve to fix a poor valve.

 

[pellicle]

Hi

I was not initially going to answer this because the question was posed about something I have no information on.

I'm looking for experiences with the On-x aortic valve. Are any of you on the new lower INR protocol (1.5-2)? Does it seem like the Cardiology professionals are embracing it?

as I am not on the On-X nor that protocol I could not answer.

hen I saw Julien's reply to this and as I was glancing through it I noticed a number of key points. So I'm saying first to you: If you want to get your best chance of a good answer learn to ask it clearly to the readers. Do not demand by your writing style that the reader (who you are asking to answer for free out of the good of their heat) to pour though your slab of text and pick out bits.

Look at your keyboard and see the "Enter" key ... it generates a break between the slabs as Julien did (and I'm doing) ... it makes our reply to you readable. I encourage you to ask questions in a similar structure : easily readable.

So I missed entirely your other questions:

Unfortunately, with my career as a Firefighter, any anti coagulation scares our Occ Med doctors. If I can keep my levels in this lower range I'm hopeful, based on recent conversations with them, I can return to full duty after surgery.

don't bet on it as I've seen example here where IIRC people did and were disappointed by management decisions after surgery (and IIRC despite assurances to the contrary before surgery).

I'm currently working on getting it in writing (easier said than done). As a 39 y/o very active person,

which leads me to ask "how much longer do you feel you'll be a field officer in the danger zone" ... at most what 10 years?

I feel the mechanical valve is the best long term choice for me. I'm not scared of Coumadin, but so many are; including many highly educated medical professionals. It's mind boggling how many misconceptions are out there.

I agree entirely .. and I mean that for every point above.

I'm optimistic that the On-x could be the choice for me.

myself I think that the On-X has clever marketing at people who obsess the 0.4 points of INR difference at the low end, but the truth of the matter is (as you've already said) it makes no difference in practicality. Further all the the modern pyrolytic carbon bileaflet valves are shaping up to have their AC levels lowered probably from 2.5 (for low risk patients such as ourselves) down to 2 ... this is speaking of "target" INR not range. The more modern thinking is more in line with the thinking of stats that govern QA in manufacturing than "ranges" which are rather meaningless and seem to have hard boundaries but yet we treat them as fuzzy / soft boundaries. By this I mean if your "range" was 2 ~ 3 then you would not burst into blood if you were 3.1 nor have a clot and die from being 1.8 ... so the boundaries are in reality just fuzzy edged.

about I am prepared to shop for Ross surgeons or take my chances with tissue if that's what it takes to "stay on the streets", but love the idea of a potential life long fix.

A Ross at your age would be one of the most risky procedures you could subject yourself to and it is false if you thin that's anywhere near a lifelong fix. This forum has quite enough Ross recipients who beguiled themselves into exactly the same decision only to face failure of their Ross within as little a 7 years (IIRC). I can point you at some here if you wish, but I hesitate because it is such a sensitive subject and I don't like to make examples of anyone.

Also, if anyone has good links to peer reviewed studies that help support the case that Coumadin doesn't make you a ticking time bomb, that would be greatly appreciated, too...just in case I need to do some educating.

I struggle with the language on this but the problem is that there are no studies of which I am aware which distinguishes low risk AVR and MVR patients from the general AC community ... so we are lumped into the same statistical basket as the basket cases who are elderly and infirm and suffering from strokes and bleeds generally due to the structural failure associated with ageing.

Having said that let me see what I can dig from my "archive" and get back to you.

Probably the best thing you can do is to learn to manage yourself and get away from a clinic. Without a doubt in my mind if you aren't a dippy , mentally incompetent and forgetful person then you will do a far better job of managing your INR than any clinic. I have a few algorithms that assist you in making decisions on INR directions and would be happy to work with you via a share SpreadSheet on google docs till you get on your feet.

Best Wishes

 

[pellicle]

Eric

some links ... I will expand this as I find more

http://www.thelancet.com/journals/la...rinterFriendly
(when I read a statement like this: However, self-monitoring is not feasible for all patients, and requires identification and education of suitable candidates. it suggests to me that the cohort of those on warfarin is not people who can run their budget nor who you would attending you with first aid)

on the subject of "risk" and who is or isn't low risk (as mentioned in my post above)

http://circ.ahajournals.org/content/...expansion.html

*Prosthesis thrombogenicity: low: St Jude Medical, On-X, Carbomedics, Medtronic Hall; medium: bileaflet valves with insufficient data, Bjork-Shiley; high: Lillehei-Kaster, Omniscience, Starr-Edwards. Note that the European guidelines recommend higher INR target for prostheses with medium and high thrombogenicity (AVR and no risk factors, 3.0 for medium and 3.5 for high; MVR and/or risk factors, 3.5 for medium and 4.0 for high).
†Risk factors: atrial fibrillation, LV dysfunction (LV ejection fraction ≤35%), left atrial dilation (left atrial diameter ≥50 mm), previous thromboembolism, spontaneous echocardiographic contrast, and hypercoagulable condition.

also an interesting read:

http://www.omicsonline.org/open-acce....php?aid=27204

some of my notes from reading that

Evidence and Lack of Evidence of Current Recommendations on Anticoagulation

The common prescription policy for patients with mechanical
valve replacement declares a therapeutic range from INR 2.5 to 4.5.
This large range includes a zone of higher risk for bleedings, beginning
from INR 3.5. After mechanical Aortic Valve Replacement (AVR), the
goal of oral anticoagulant therapy is usually to achieve an International
Normalized Ratio (INR) of 2.5 to 3.5 for the first 3 months after surgery
and 2.0 to 3.0 beyond that time [3,4]. Low-dose aspirin (75 to 100 mg
per day) is also indicated in addition to Warfarin [3,4,9,10]. At that
level of anticoagulation, the risk of significant haemorrhage appears
to be 1% to 2% per year [4]. Thrombosis and thromboembolism risks
are greater with any mechanical valves in the mitral than the aortic
position, and, therefore, higher INR levels (2.5 to 3.5) are generally
recommended for mechanical mitral valve prostheses [9,10]. These
recommendations must be read with the knowledge that several biases
in published investigations actually prevent any firm conclusion. The
most common are: study cohort including patients implanted with
different generation devices, non-randomised series without controls,
lack of stratification for additional risk factors associated with the type
and location of prosthetic valves, concomitant antiplatelet therapy.
More importantly, the safety and efficacy of a given INR range is often
derived from an intention-to-treat analysis rather than based on the
intensity of anticoagulation actually achieved. Notably though adding
antiplatelet therapy decreases the risk of systemic embolism or death, it
concurrently results in a definite increase of the risk of major bleeding...

The LOWERING-IT study was a prospective, open-label, singlecentre
randomized controlled trial that compared the thromboembolic
and bleeding events between two different anticoagulation intensity
levels in low-risk patients undergoing a single aortic mechanical
replacement. The two anticoagulation intensity levels were the low
anticoagulation intensity, with a range INR of 1.5 to 2.5 (LOW-INR
group), and the currently recommended intensity, with the standard
range INR of 2.0 to 3.0 (CONVENTIONAL-INR group).

... One versus three thromboembolic events occurred in the LOW-INR and CONVENTIONAL-INR, respectively ...

... this low-intensity anticoagulation strategy is associated with a significant reduction
of the average hemorrhagic events when compared to conventional therapy (INR of 2.0 to 3.0), without any increase of thromboembolic complication.Interestingly, this trial included different types of bileaflet prostheses highlighting the low-thrombogenicity of these devices

As described in the LOWERING-IT trial, a target INR 1.5 to 2.5 was prescribed. Selected young women achieving this target INR with a warfarin daily dose lower than 5 mg were preferentially offered a third generation mechanical device. When pregnant, such women were kept on the same low-dose sodium warfarin anticoagulation throughout
all pregnancy with a weekly INR estimation and joint cardiologic and obstetric monthly evaluations. Cesarean delivery was scheduled before the end of the 37th gestational week. Warfarin therapy was discontinued only 2 days before section and restarted 1 day after surgery. As recently reported, no maternal nor foetal complications were detected in sixteen
pregnancies managed by this anticoagulation protocol

 

[rnff2]

If you go to the On-x website you can email them directly and they are great at answering questions you may have. I sent them a list of questions and was sent a great email in response. They also sent me a follow-up email about a month later to see if I had an other questions.

 

[JulienDu]

If you go to the On-x website you can email them directly and they are great at answering questions you may have. I sent them a list of questions and was sent a great email in response. They also sent me a follow-up email about a month later to see if I had an other questions.

Be VERY careful with their answer they are the only valve company that do Patient Marketing. Look at their webpage very carefuly : http://www.onxlti.com/medical-profes...odynamic-data/

They compare tons of data to other valves. The other valves are written in very small and when you look at those numbers, you must say to yourself WOW, this ONYX is the good ****.

Well guess what, they do compare the Onyx to the old Generation Valves. They do not compare the Onyx to the St Jude Regent, to the new Carbomedics or the new ATS but to the old model

And do not tell me they did not have time to change that. So do not be a fan boy like I was and read carefully.

P.S : I am not saying that this is a bad or a good valve, too retarded to judge that, just be careful with the marketing

 

[COfireftr]

Julien-

Thank you so much for taking the time to provide this information. It is all helpful and very much appreciated!

I work in very dangerous fields ( not as dangerous as yours too ). I build log homes, so I have to work with chainsaws most the day, on top of walls, sometimes with only one leg. I also do a lot of bush works and the risk of being hurt is important. So I can totally understand your worry and your decision is even harder than mine because, in addition to taking risks you also have to take care of people.

I might disagree with you on this one. I bet your job is every bit, if not more, dangerous than mine. That sounds like a fun job! I think much of the problem I am up against is that the perception of my job is super risky/dangerous all the time. I really feel that anything that will kill me with coumadin will kill me without. I fall down more from my mountain bike in one day than I have in a whole career in the fire service.

Now, as for the INR management, I would not focus too much on what type of valve because many studies have shown that the difference in lower INR range is barely relevant among the last generation valve.

I am totally with you here. The problem is, I feel this lower approved range (even if it is a little gimicky) might help me sell my occupational doctors on the ability to safely go back to work.

Now I just wanted to show those studies because you might not end up with an Onyx and you might be disappointed ( like me) at first but your surgeon also take into account the fitting of the valve and the Onyx has more fitting issues than the ATS or the ST Jude Regent for example. I am not also recommending to aim low for INR, i was just showing other valve capacity through those studies and there are many more around.

I appreciate that and do understand this is a possibility. It will be important for me to look at all possibilities. My potential surgeon sounds pretty sure the On-x would be my best bet, but I certainly understand that they won't know for sure until they get in there.

P.S : I am not saying that this is a bad valve, too retarded to judge that, just be careful with the marketing

Point well taken. It's kind of funny because I am essentially utilizing their clever marketing in my favor to lobby for my job, even though I realize you must take it with a grain of salt.

As for the Ross, I would hate it because I do not like the idea of removing a good valve to fix a poor valve.

I agree with you. I am just desperate to do whatever it takes to keep my job.

Thanks again for everything! It's awesome to hear from people close to my own age. I am always the one that sticks out in the cardiology office. I think most people assume I drove my grandparents there.

Eric

 

[COfireftr]

Sorry for the choppy reply above. Still trying to get used to the forum. Not sure why half the quotes worked and half didn't. I did find the "Enter" key on the keyboard, though...so am making some progress. I'll catch on eventually.

 

[pellicle]

Hi

sorry if my reply seemd cranky, its just that I do like to help if I can rather than ignore. I am a bit dyslexic and have an aversion to slabs of text.

I found these threads you may be interested in

http://www.valvereplacement.org/for...on/861863-work-restrictions-on-blood-thinners

http://www.valvereplacement.org/for...es-cardiac-rehabilitation/42655-big-thank-you

http://www.valvereplacement.org/for...as-valve-replacement-affected-your-occupation

http://www.valvereplacement.org/forums/forum/heart-talk/41798-tissue-valve-vs-mechanical-valve

http://www.valvereplacement.org/for...on/861863-work-restrictions-on-blood-thinners

 

[pellicle]

Hi

Sorry for the choppy reply above. Still trying to get used to the forum. Not sure why half the quotes worked and half didn't. I did find the "Enter" key on the keyboard, though...so am making some progress. I'll catch on eventually.

In the reply editing area, there is a little button on the upper right with an A clicking that reveals an advanced editor.

The forum (like many) is written to use a "markup" (fancy term to allow you to change text into text into text) that's done in bbcode ... bbcode wraps things in square braces [ and ] and has an opening and closing "tag"

so [someTag] starts and [/someTag] ends.

The easies way to deal with this is to click the A and then highlight the section you're wanting to quote and click the " icon there. That will wrap the text in a quote
an example:

so, you didn't say this

now appears as if I'm quoting someone

if there is no closing tag [/QUOTE] or its missepelled it leaves segments

so, you didn't say this[/QUOT E]


hope that helps

also, above in reply to Julien you say:

I agree with you. I am just desperate to do whatever it takes to keep my job.

what I mentioned in my reply was "what if you do that, but a short time later are unable to keep your job. I am saying this because the valve choice you make should transcend short term situations. I know that planning for an eventuality is fraught, but give your age I'd wonder how many decades of active service you have in you and while you love it what if you (for instance)

1. had the Ross,
2. lost your job / were retired from active service due to injury
3. the lifespan of the Ross turned out to require you heed a reop soon after
4. you got an undesriable outcome (but not death) from the redo (such as being on a pacemaker / getting an infection and losing your sternum) ...

would you then be lying there saying "****"?

If yes then revise your plans

I say to learner motorcycle riders that every day I ride my bike I ask myself the question "would I regret it if I became paraplegic tomorrow"

So far I keep getting back in the saddle.

Lets see how I feel tomorrow.

 

[COfireftr]

Hello Pellicle

Hi sorry if my reply seemd cranky, its just that I do like to help if I can rather than ignore. I am a bit dyslexic and have an aversion to slabs of text.

No worries at all. I appreciate the help and it totally makes sense. I honestly started writing with the intention of creating a short open ended thread to gather some broad experiences with valve and low INR. Somehow it just kept going and going and got away from me. Probably didn't help that I was at work and kept getting interrupted by emergency calls.

I sincerely appreciate all the great links and information you have provided in these posts. I will start sifting through them. I appreciate your insight. Thanks also for the forum help. I don't do much of it and definitely don't write code.

don't bet on it as I've seen example here where IIRC people did and were disappointed by management decisions after surgery (and IIRC despite assurances to the contrary before surgery).

This is exactly my fear. Scared to commit and then find out after the fact things aren't as predicted. I know that a some flux in INR means very little. Unfortunately, there are many medical professionals that don't get it. Any time firefighting and anticoagulation come up in the same sentance they turn off and stop thinking.

which leads me to ask "how much longer do you feel you'll be a field officer in the danger zone" ... at most what 10 years?

I have to plan for up to 20 years I could potentially stay in my current position. I am hopeful it could be as few as 5, though. There will be some command level positions opening up. At that point I wouldn't be operating directly in that danger zone so coumadin would be a non issue (other than the fact that I would still be operating an emergency vehicle at high speeds). However, I can't count on it happening. There would still be a very competitive promotional process and there are no guarantees.

myself I think that the On-X has clever marketing at people who obsess the 0.4 points of INR difference at the low end, but the truth of the matter is (as you've already said) it makes no difference in practicality.

So totally agree. I am hopeful that the clever marketing might actually help me get approval from work so I will ride that train if I need to!

what I mentioned in my reply was "what if you do that, but a short time later are unable to keep your job. I am saying this because the valve choice you make should transcend short term situations. I know that planning for an eventuality is fraught, but give your age I'd wonder how many decades of active service you have in you and while you love it what if you (for instance)

1. had the Ross,
2. lost your job / were retired from active service due to injury
3. the lifespan of the Ross turned out to require you heed a reop soon after
4. you got an undesriable outcome (but not death) from the redo (such as being on a pacemaker / getting an infection and losing your sternum) ...

All very good questions! This is exactly what i'm grappling with. I know a mechanical valve of any flavor is the "best" thing to do. I also know that the risk is relatively low of any bleeding event. Unfortunately, others don't get this. The Ross is a huge risk and probably not feasible. Honestly, I would probably take my chances on a tissue valve getting me at least through the next 5 years or so and planning on reop before a Ross. Tissue might at least get me to a point in my career that I have more options for job position. It's hard to explain to someone outside the job just how important it is to us. Kind of crazy really, but I really worry about my mental health if unable to continue. Don't get me wrong...I am really looking forward to retirement. But it needs to be on my own terms and fully pensioned!


Hopefully I addressed most of your questions. I do sincerely appreciate your time and experiences. It's remarkable that people on here share information and experiences so freely. I'm not sure what I would do without it. Now if only one of you were psychic and could tell me when the time was right to pull the trigger. My surgeon is ready to go now, but my cardio wants to wait a little longer (maybe up to 2 years). The next step will be getting those 2, plus the Occupational Med doc on the same wavelength.

Thank you again!!

Eric

 

[COfireftr]

If you go to the On-x website you can email them directly and they are great at answering questions you may have. I sent them a list of questions and was sent a great email in response. They also sent me a follow-up email about a month later to see if I had an other questions.

Thank you. Good idea. Even though they are trying to sell a product I think it might be worth hearing what they have to say. I might just do this. They may also be able to help me provide convincing information to my employer.

Eric

 

[pellicle]

Hey Eric

...
Hopefully I addressed most of your questions

actually the questions I have are really only "food for your thoughts and considerations" ... I expect you've probably considered them but raise them just in case.

One last thing I'll put down is that in all of life there are situations which occur which totally change your directions. Sometimes those changes are subtle enough that we think we can see a way round them when simply changing may be the easiest way.

You say:

It's hard to explain to someone outside the job just how important it is to us.

and I think in some ways I do get that, as that's why I still ride a motor bike ... because its important to me even though everyone has tried to talk me out of it for decades now. So while I can't offer more than that I can observe that in the military they take their officers away from front line work even if they are infantry and commanders (like Majors). Its because as they are closer to 40 their eyes and ears and reactions are just not up to what 25year olds usually are.

I'd have thought it was the same for fireies ... that you would be more oriented to planning and administration.

I dunno ... perhaps that its just that I've had 5 more years to get used to the fact that my short vision is less clear than it once was.

PS: Now that you're regitered, I just checked your Bio and found:
BAV with Aortic Insufficiency and LVH.

So, myself I'd probably also consider that at 39 you stand a reasonable chance of getting 10 years out of a tissue prosthetic. That may kick the can down the road further so that when reop occurs there may be some other driver such as aneurysm which may become a driver as it did for me when I had my 3rd OHS @ 48YO. As I understand it there is a significant statistical correlation between BAV and Aneurysm.

I wish you the best with your decision and it seems to me that you are across all the major points. I'd say just hold them all under consideration and in time an answer will become clear.

Best Wishes

 

[JulienDu]

Thank you. Good idea. Even though they are trying to sell a product I think it might be worth hearing what they have to say. I might just do this. They may also be able to help me provide convincing information to my employer.

Eric

Onyx marketing is very good, it should help you convince your doc, and you have the FDA approval which is not nothing ! And by the way, Onyx did develop a Pannus barrier which is a good bonus for the valve.

 

[Ryan CA]

Hey Eric,

I am 41, received my Onyx Aortic Valve in June 2014. Part of the reason I chose the valve was the potential for reduced coumadin in the future.....although there were several other reasons as well.

Once the reduced INR was approved, I asked my doctor about it and he agreed we should reduce my INR to 1.8 - 2.2. I was 2.4 - 3 previously. With a consistent diet, it has been fairly easy to stay in range with home testing. I also take an 81 milligram aspirin once per day.

While there is not much risk in bleeding to death from a paper cut at either range I feel like the less chemicals I have to ingest the better and a lower INR is a good thing.

I noticed you mention you are a mountain biker. I mountain bike 3-5 times per week, and getting back on the bike after surgery was always a primary concern / goal for me. I have noticed one thing since the reduced INR has gone into effect.....when I am within the new lower range, all those little nicks and scraps you get on your lower legs from sticks and bushes and rocks while riding dont send little streams of blood down my leg. When I was in the middle to upper 2's, I would get little streams of blood running down into my sock fairly regularly. Now, those little scrapes and cuts dont seem to bleed anymore than they did before I was on the coumadin. Maybe its not quite a scientific observation, but its real life experience from some one in the same situation you will be in.

Hope that helps.

Ryan

 

[almost_hectic]

Got my OnX in August. I'm on the aspirin regimen of course as well. Not sure if every surgeon does it the same way or not but they didn't lower my INR til after three months of keeping you at a slightly higher (normal for all non OnX valves) then they lowered my INR slowly. At the time I had to inform my cardiologists office of the range set by OnX (and the FDA approval. They had no knowledge of it. They had to look it up and verify what I was telling them. They agreed to set my therapeutic range from 1.7 to 2.5 just to be safe. I didn't argue. So far for me also, it's been pretty easy to stay in range. Since then I've also gotten my own test equipment. On my regular test days I've been fairly consistent 2.0 for the most part. With a few dips as low as 1.7 and one bump as high as 2.5 but on average it's a steady 2.0. Now that it's been a while I realize there's gonna be fluctuations from day to day, so I'm comfortable being a touch above the 1.5 guideline rather than dip below for a couple days or more. For the most part I also don't seem to bleed much if any more than normal either from routine scrapes and cuts.

 

[JulienDu]

Hey Eric

So, myself I'd probably also consider that at 39 you stand a reasonable chance of getting 10 years out of a tissue prosthetic. That may kick the can down the road further so that when reop occurs there may be some other driver such as aneurysm which may become a driver as it did for me when I had my 3rd OHS @ 48YO. As I understand it there is a significant statistical correlation between BAV and Aneurysm.

Best Wishes

This is a good point, so Eric did you have your cardio precisely measure your Ascending Aorta Size, see if there is any signs of dilation ?

 

[COfireftr]

Once the reduced INR was approved, I asked my doctor about it and he agreed we should reduce my INR to 1.8 - 2.2. I was 2.4 - 3 previously. With a consistent diet, it has been fairly easy to stay in range with home testing. I also take an 81 milligram aspirin once per day.


I noticed you mention you are a mountain biker. I mountain bike 3-5 times per week, and getting back on the bike after surgery was always a primary concern / goal for me. I have noticed one thing since the reduced INR has gone into effect.....when I am within the new lower range, all those little nicks and scraps you get on your lower legs from sticks and bushes and rocks while riding dont send little streams of blood down my leg. When I was in the middle to upper 2's, I would get little streams of blood running down into my sock fairly regularly. Now, those little scrapes and cuts dont seem to bleed anymore than they did before I was on the coumadin. Maybe its not quite a scientific observation, but its real life experience from some one in the same situation you will be in.

Thank you, Ryan! That helps a ton and is exactly some of the feedback I was hoping for. I really hope I have the opportunity for home testing. Awesome to see you back on your bike...very inspiring and further proof that this doesn't have to slow you down or change your lifestyle. Thanks so much for taking the time to respond. I may be hitting you up in the future if this is the way I end up going.

Take care,
Eric

 

[COfireftr]

Got my OnX in August. I'm on the aspirin regimen of course as well. Not sure if every surgeon does it the same way or not but they didn't lower my INR til after three months of keeping you at a slightly higher (normal for all non OnX valves) then they lowered my INR slowly. At the time I had to inform my cardiologists office of the range set by OnX (and the FDA approval. They had no knowledge of it. They had to look it up and verify what I was telling them. They agreed to set my therapeutic range from 1.7 to 2.5 just to be safe. I didn't argue. So far for me also, it's been pretty easy to stay in range. Since then I've also gotten my own test equipment. On my regular test days I've been fairly consistent 2.0 for the most part. With a few dips as low as 1.7 and one bump as high as 2.5 but on average it's a steady 2.0. Now that it's been a while I realize there's gonna be fluctuations from day to day, so I'm comfortable being a touch above the 1.5 guideline rather than dip below for a couple days or more. For the most part I also don't seem to bleed much if any more than normal either from routine scrapes and cuts.

Thank you for this! Glad your cardiologist listened to you and agreed to the new range. I'm glad to hear that you've been able to stay pretty consistent around 2. I have a feeling it will be very important for me to stay as consistent as possible and maybe even prove it to my employer. I hope to be able to home test, as well. Thanks again for sharing your experiences.

Take care,
Eric

 

[COfireftr]

This is a good point, so Eric did you have your cardio precisely measure your Ascending Aorta Size, see if there is any signs of dilation ?

Julien-

Great question. I did request a CT scan several years ago to check my aorta. At that time everything looked normal with no dilation. Fingers crossed it stays that way!