On-X valve 6 weeks later...

[pellicle]

please correct me if I'm wrong. I don't think I am.

that's my understanding as well. Major organ or vascular trauma is life threatening without prompt pressure on wounds and bleeding control. IC bleeds are perhaps the most threatening.
Btw, I'm not an MD.

 

[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.

@Protimenow
Sorry to make you repeat yourself....

My beloved cardiologist retired last month, and I just saw my new one yesterday. He was curious about my mentioning that I was reading some study, blah blah. When I told him that I have an On-X (he seemed to have missed that in my records), I said that the On-X folks recommended 1.5-2.0, and my previous cardiologist's target was 1.8. BUT, that I was more comfortable in the 2.0-3.0 range, I see no reason to lower it.

Then we visited the Coumadin Clinic to get me set up for them to manage my warfarin. It's part of the program with Philips BioTel, they lend me the meter and provide supplies, while I test every two weeks and results get reported to my doctor or clinic. So the doctor's order specifies the desired range.

He put 1.5-2.0 on the order as the desired range, even though I told him I want to be 2.0-3.0, as I am now. Not comfortable with this. Not sure how to proceed. They are going to be directing me to lower my dosage, and I'm not going to be doing that, and it will soon be obvious that I'm not cooperating.

I know you or someone posted a few charts and study results in the last month or so, showing that the lower range is not a good idea, that there is a higher history of strokes. Any idea which thread that is? Can't find it. I'd like to show that to my new doc so I can nip this in the bud, get him to change my range. THANK YOU.

 

[Protimenow]

I'm pretty sure Pellicle posted this material.

I don't mind repeating myself.

The Biotel and other services that do little more than submit your report to the doctor, prescribe your dosages from an outdated table, and charge the insurance companies obscene fees.

Telling you to test every 2 weeks isn't doing you any favors, either, and makes it clear that this doctor probably doesn't know much about anticoagulation management. He bought into all the B.S. he got from the On-X sales people.

You might ask him how your life would be changed if you kept your INR between 2.0 and 3.0. It won't. But he apparently buys into the marketing crap.

If you're stuck using the service, perhaps you can get your own meter and your own strips, and do your weekly tests. You may also want to self manage your dosing - there are people here (especially Pellicle) who can help with that.

You may have to find a different cardiologist if this one INSISTS that you keep your INR between 1.5 and 2.0.

Getting a cardiologist with better knowledge of anticoagulation management, or not marching in lockstep with On-X materials may be the best way to go.

Independent testing and management is fine - but you'll eventually need warfarin refills, and for that, you'll need a cooperative doctor or physician's assistant to do that. (FWIW - when I had no insurance, I was able to by my warfarin overseas - but, of course, am not recommending this).

---

As for myself - I've been self testing and self managing since 2009. My doctors haven't asked for copies of my records (I keep a spreadsheet listing all my tests, time and date, which meter I used, results, and other data) to prove that I know what I'm doing. If you have a primary care doctor with a supportive office, you might get them to write your warfarin prescription for you.

 

[tom in MO]

Your range is valve specific. The range recommended for yours is 1.5-2. If I recall correctly, there are other ranges recommended in the past for an On-X (2-2.5 or 2-3) and it was lowered based upon new data. I believe the new range was approved by the FDA. I think there a a few specific individuals who had problems at the 1.5-2 range reported either here and/or the literature, but this was not significant enough for the manufacturer or FDA to have the range be increased. My St.. Jude had its range changed from 2-3 to 2 -2.5 and I've had no problems for many years.

 

[Protimenow]

You can certainly stay in lock step with what On-X is pushing, and convinced your physician is appropriate. It's your life.

But your life won't be changed in any noticeable way if you maintain a safer range of 2.0 - 3.0. You won't be able to tell the difference. And you'll be safer. I can't understand why ANYONE would push this lower range for ANY prosthetic valve, when there's no real difference in the way you live your life with a slightly higher IINR, and have the knowledge that your risk of clots is reduced by doing so. It makes NO sense to me.

Even if some here, and some brainwashed doctors, see some terrible consequences from that demon warfarin, and catastrophic results by (god forbid) shooting for an INR between 2 and 3, it still makes no sense to me to take the risk of a lower IINR - even if the risk is minimal.

If I had an On-X (and I don't), I'd still maintain my INR above 2. (And, FWIW, the acceptable error for INR testing is 20% - meaning that a 1.5 might on a meter may actually be 1.3. I certainly wouldn't take that risk.

----

There are reports showing negative effects on On-X patients when the INR is too low. I'm pretty sure Pellicle has the links.

My previous suggestion holds - get your own meter and strips, do your own testing and management, and see if another doctor can prescribe warfarin for you. You DON'T have to use a range that you aren't comfortable with.

 

[pellicle]

There are reports showing negative effects on On-X patients when the INR is too low. I'm pretty sure Pellicle has the links.

dunno who you're talking with but if its someone on my ignore user list I just don't see the conversation unless you quote them as I've done here. Even then I don't see it unless I click "show content".

I suggest you read that post linked above to see my reasoning and see if it applies to you. Because some people just can't have an intelligent or informed discussion (and that's nobodys fault, not even the Romans).



Best Wishes

 

[Protimenow]

.

 

[treichert0312]

Now going on 10 weeks out - running again, some bike riding as well. I was hoping to get on the bike by October, so ahead of that curve. The cardiac rehab nurse was almost shocked when I went in for the intake interview last week, that I was running and biking. My surgeon's nurse gave me the green light on that activity. 90 days before I lift more than 30 pounds, is what I am planning based on doctor's orders.

This morning woke up with low grade fever - 99.2 F - uh-oh - got the Covid. Fully vaccinated & boosted - positive anyway. Any concerns with that? I told my anticoag clinic about it and my intention to get on the antivirals, so we'll see what they say.

 

[Timmay]

Now going on 10 weeks out - running again, some bike riding as well. I was hoping to get on the bike by October, so ahead of that curve. The cardiac rehab nurse was almost shocked when I went in for the intake interview last week, that I was running and biking. My surgeon's nurse gave me the green light on that activity. 90 days before I lift more than 30 pounds, is what I am planning based on doctor's orders.

This morning woke up with low grade fever - 99.2 F - uh-oh - got the Covid. Fully vaccinated & boosted - positive anyway. Any concerns with that? I told my anticoag clinic about it and my intention to get on the antivirals, so we'll see what they say.

Sorry to hear about your fever.

Question regarding your On-X valve. What size valve were they able to put in? I'm curious because most On-X people (like myself) seem to get smaller valves than the St. Jude's or ATS (Medtronic). It's actually a substantial difference in a lot of patients that have reported their valve size. The On-X valve is significantly bulkier.

I only got a 23mm valve and they had to do an aortic root expansion just to fit THAT smaller size valve. And I say smaller size valve because most people with my height/weight would get 25+ mm valves without issues.

This is a topic that I wish we were all educated on PRIOR to surgery. It is called Patient Prosthesis Mismatch (PPM). I am beginning to wonder how much my HEAVY aerobic activity will be limited by my 23mm valve. We'll see.

EDIT: @treichert0312 I checked your profile and it lists a 23mm like me. I'll be interested in hearing about your jogging. Would love to hear some data on that like ...

"I jogged 1 mile today and finished with a pace of 10:15 min per mile"

 

[nobog]

Sorry to hear about your fever.

Question regarding your On-X valve. What size valve were they able to put in? I'm curious because most On-X people (like myself) seem to get smaller valves than the St. Jude's or ATS (Medtronic). It's actually a substantial difference in a lot of patients that have reported their valve size. The On-X valve is significantly bulkier.

I only got a 23mm valve and they had to do an aortic root expansion just to fit THAT smaller size valve. And I say smaller size valve because most people with my height/weight would get 25+ mm valves without issues.

This is a topic that I wish we were all educated on PRIOR to surgery. It is called Patient Prosthesis Mismatch (PPM). I am beginning to wonder how much my HEAVY aerobic activity will be limited by my 23mm valve. We'll see.

I wouldn't worry too much about your valve size as the On-x as well as the SJM are about as good as its going to get as far pressure drop (restriction to flow). That's the current "state of the art" when it comes to mechanical valves. Virtually all doctors cram the largest valve they can get into a "size X" hole when oversizing can cause issues itself.

Tissue valves are another animal (sorry about the pun) - some valves, mainly porcine, can have a 100% difference in pressure drop and one cannot tell simply by looking at them, i.e. the pressure drop could be 10 mmHg or 20 mmHg, just the way it is.

BTW - On-x only makes up to a size 25mm carbon size, larger sizes just use a different cuff.
BTW # 2 - "sizing" is a joke in the industry - one manufactures 21mm is anothers 25mm - its all over the place.

 

[Timmay]

I wouldn't worry too much about your valve size as the On-x as well as the SJM are about as good as its going to get as far pressure drop (restriction to flow). That's the current "state of the art" when it comes to mechanical valves. Virtually all doctors cram the largest valve they can get into a "size X" hole when oversizing can cause issues itself.

Tissue valves are another animal (sorry about the pun) - some valves, mainly porcine, can have a 100% difference in pressure drop and one cannot tell simply by looking at them, i.e. the pressure drop could be 10 mmHg or 20 mmHg, just the way it is.

BTW - On-x only makes up to a size 25mm carbon size, larger sizes just use a different cuff.
BTW # 2 - "sizing" is a joke in the industry - one manufactures 21mm is anothers 25mm - its all over the place.

Thanks for posting this. I went and grabbed a screenshot from Cryolife's site to support the comment that the On-X only goes up to a 25mm valve. I don't feel nervous about my 23mm one now as I am ratcheting up the intensity of my cardio. Thanks again.

 

[pellicle]

Any concerns with that?

depends ... in the main no, for "the few" may be rough.

Keep us posted

 

[pellicle]

BTW # 2 - "sizing" is a joke in the industry

so this suggests that its not well standardised. I would wonder if surgeons actually know these sorts of data points (and if it rolls into their decision making process as to which valve to regularly use)?

 

[nobog]

so this suggests that its not well standardised. I would wonder if surgeons actually know these sorts of data points (and if it rolls into their decision making process as to which valve to regularly use)?

I'll make it easy:

Go to Google and type in "heart valve sizer" and select images

Let the confusion begin ...

One would think that there would be a series (19, 21, 23, ....) of round mm "plugs" on a stick that the surgeon would use to size the annulus - but nooooo.... each specific valve has its own matching sizer set - I don't get it.

 

[pellicle]

Let the confusion begin ...

LOL ... thanks

 

[treichert0312]

Sorry to hear about your fever.

Question regarding your On-X valve. What size valve were they able to put in? I'm curious because most On-X people (like myself) seem to get smaller valves than the St. Jude's or ATS (Medtronic). It's actually a substantial difference in a lot of patients that have reported their valve size. The On-X valve is significantly bulkier.

I only got a 23mm valve and they had to do an aortic root expansion just to fit THAT smaller size valve. And I say smaller size valve because most people with my height/weight would get 25+ mm valves without issues.

This is a topic that I wish we were all educated on PRIOR to surgery. It is called Patient Prosthesis Mismatch (PPM). I am beginning to wonder how much my HEAVY aerobic activity will be limited by my 23mm valve. We'll see.

EDIT: @treichert0312 I checked your profile and it lists a 23mm like me. I'll be interested in hearing about your jogging. Would love to hear some data on that like ...

"I jogged 1 mile today and finished with a pace of 10:15 min per mile"

I jogged 3 miles last Wed, 10:52 per mile. Thursday started cardiac rehab. Got a couple bike rides in over the weekend. Once Covid clears I’ll get more running. Target is the 5k Run for the Mums in Tipp City Ohio.

 

[Timmay]

Sorry to hear about your fever.

I jogged 3 miles last Wed, 10:52 per mile. Thursday started cardiac rehab. Got a couple bike rides in over the weekend. Once Covid clears I’ll get more running. Target is the 5k Run for the Mums in Tipp City Ohio.

That’s really impressive actually. At 10 weeks you’re jogging 3 miles at a really healthy pace. Wow. Congrats and great job!

 

[treichert0312]

I have the Strava app and working to keep the hill outside my house in Local Legend status, also get motivated by the zombies in the Zombies, Run app. End game is ski patrol this winter.

 

[treichert0312]

I asked my primary care about an antiviral. They said I was probably too healthy! the request got forwarded to the hospital & they were able to get me a script.
The Coag clinic recommended I take a heavier dose of warfarin tonight only. Covid apparently can lead to clots. New information to me.

 

[Beach77]

I asked my primary care about an antiviral. They said I was probably too healthy! the request got forwarded to the hospital & they were able to get me a script.
The Coag clinic recommended I take a heavier dose of warfarin tonight only. Covid apparently can lead to clots. New information to me.

Hope you feel better soon!