Anyone on the On-X study here?

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james

Well-known member
Joined
Oct 13, 2009
Messages
206
Location
Seattle,Wa
I am going to Tacoma on Monday to talk to a clinic that is doing the FDA/On-X coumadin replacement study.
I know little except that I like all the benefits I hear about the On-X and do not want to be on a drug if I do not have to.

This equated to a second opinion for me and has some risk so I just wanted to hear thought on it. I searched the forums and did not find anyone taking part.
Thanks
 
relax

relax

.
your photo suggests you are a young guy, so mechanical is the way to go. personally, i also think on-x is the way to go.

maybe the on-x valve will offer the chance of lower/zero warfarin in the future, maybe not. but do not count on it; just be assured that taking warfarin is not a problem. it is not a "toxic drug". with home testing and a little comon sense, you can live a totally normal life, totally!

my personal opinion is that given your age, ANY of the widely available mechanical valves is superior to a tissue valve

good luck
 
Hi James,
I just signed up for the On-x survey. My surgery is scheduled for tomorrow.

My surgeon recommended a mechanical valve over a tissue valve, as a tissue valve would have meant probably about 2 additional surgeries. That was pretty much the clincher for me as I can't imagine having to go through this again.

I'm not real thrilled about taking blood thinners, though mostly I hear it's not a big deal for most people and I'll take that over the need for additional surgery.

Wishing you all the best!
Luana
 
I've got an On-X but didn't participate in the study. I was 15 days initial diagnosis to surgery so I didn't have time to even consider it. I went with On-X because of my age and because my surgeon told me that if he were in my shoes he would want an On-X.

Coumadin really isn't a big deal, hasn't affected my life other than having to be a bit more careful with full contact sports.

I am interested in the study which I think isn't scheduled to conclude until 2015. If the recommendation comes back that us On-Xers can do away with Coumadin or even go on a lesser dose I will be thrilled.
 
Hello James, Welcome.

I have been enrolled in the On-X study since July of 2008.
Having a tissue valve was never a consideration of mine. The potential of having multiple surgeries did not sound all that inviting to me. I'm 49 now and having a tissue valve would mean at least one maybe two more surgeries in my life. Not interested.

After speaking to my surgeon and checking into the On-X program, I chose to have an On-X valve and join the study. I have an On-X Valve in the aortic position and also had my ascending aorta replaced with a Gelweave Graph. I feel good. I'm doing things that I haven't been able to do in 20 years.

First, I’m sold on the design of the valve. I am a mechanic by trade and the design features of the valve made sense to me. The way the valve flares creates a vortex that constantly washes the valve clean in areas other mechanical vales allow blood to pool. Also the floating hinge system allows the valve to flow more blood per beat, and again, constantly cleans the hinge area helping to ward off clotting in this area. I think it’s a well designed carburetor.

The study. They tell me there are 3 fingers to the study. I am in the aspirin, low dose of Coumadin finger. My range is 2.0 - 3.0. I've been out of range 3 times. I had initially hoped to be in the Plavix finger, although, today I am satisfied where I am.
Reason one, there is no testing for Plavix, you are never really sure where you stand with an INR reading. I didn’t think it would be important at first but I feel more comfortable knowing what my INR is.

At some point during this study I expect that they will want to change my status quo. I expect that they will lower the INR threshold or move me from Coumadin to Plavix, or who knows what. It’s a study, the object I expect is that their ultimate goal is to prove that you can have an On-X valve and take no anticoagulation meds at all. Where’s the line? I would convert to Plavix if they ask but I’m not going to be that bold a pioneer to take zero meds.

I am confident that at each cusp I will have the final choice as to proceed or not.

As part of being a guinea pig On-X covers the ongoing cost of testing and checkups. The Inratio 2 meter and all my testing supplies are provided to me at no cost to my insurance or me. No co-pays. My 1-year echo was covered fully.

A second benefit and one I really did not expect, I have contact with my cardiologist office weekly. I test every Tuesday. I call my results into QAS, a data collection & reporting agency, and then I call my number into my cardiologist office so I have continual contact with them each week. On occasion, I get a call from the person in charge of the study in my surgeon’s office just checking up with me to see how everything is going. I get monitored a little more closely.

For now I'm pleased with my choice, no reason not to be, I feel better then my wildest expectations and I feel well taken care of. I feel I made the right choice for me.
Everything has gone exactly the way it was pitched to me on the front end.
From On'X, the doctors, all the caregivers, everyone has done everything I was told they would and more.

Now would I feel as well with any other Mechanical valve? I don't know, and frankly hope I don't ever have to find out.


Good luck with your decision, If I can be of any futher assistance, no problem.
 
I am going to Tacoma on Monday to talk to a clinic that is doing the FDA/On-X coumadin replacement study.
I know little except that I like all the benefits I hear about the On-X and do not want to be on a drug if I do not have to.

This equated to a second opinion for me and has some risk so I just wanted to hear thought on it. I searched the forums and did not find anyone taking part.
Thanks
Hi James - I don't recall who else is in the med study but I think I remember, from posts at least a year or two ago, at least one or two members here who were in an On-X medication trial.

It might take a bit of looking but an advanced search might turn up more information, perhaps a thread title search only, with On-X within the title, for starters.

Or, occasionally On-X gets spelled incorrectly within posts also; so even a search with onyx in the title or posts might find more posts for you.
 
Ya the machinist/designer in me really likes the designed flow patterns of the On-X and the guy that want to start his own business likes the paid health care part of the survey.
I am hoping for aspirin/plavix or just aspirin as that changes nothing about my normal routine.
 
Ya the machinist/designer in me really likes the designed flow patterns of the On-X and the guy that want to start his own business likes the paid health care part of the survey.
I am hoping for aspirin/plavix or just aspirin as that changes nothing about my normal routine.

Just so you're informed:
Plavix can cause major bleeding. Plavix and aspirin together, ditto.
So can just aspirin.

Do some googling about side effects of Plavix, Plavix & aspirin and aspirin alone.
 
Sounds to me like you'd be well advised to get yourself onto the study, especially if you're going to be self employed ? Here in the Uk I'm self employed but have no charges for blood tests or any medication, but our system is different.
For me the taking of Warfarin isn't an issue at all. The only thing that is annoying about the On-X is the constant ticking, especially in bed.
I dont know how long it's been now since my last blood test ! It must be pushing a couple of months ? I try not to worry about my INR or let it effect my life in the slightest. I think that, especially with the ON-X, ones range is far greater, ie. pretty much anything above 2.0 and below 5.0. Here's wishing you all the very best.
 
Hello James,

If you choose to pursue the study, your surgeon’s office will have you take Plavix and a low dose of aspirin for five days and then they will do a blood test to see how your system responds to the drug. If you are a responder then you may have the option.
I was told that about 30% do not.

What finger of the study you end up in is said to be random.

I am pleased where I am and how I am being monitored. If I can help to advance the studies of valve developments, good.

Woodbutcher probably is the most forward example of how little having an On-X, (other then the clicking) alters your life.

My valve clicks too but the noise seldom bothers me. My kids tell me they can hear it almost anytime. That was one of the initial features pitched is that the On-X is super quiet. If this is quiet it makes your wonder how loud the other manufactured valves are?
 
Wow we get heart/life saving surgeries and after a few month only get to complain about a bit of clicking. That is great.
Really though I am a bit of a sound-phobe I sleep with earplugs in, would that amplify the internal sound?
 
In addition to the decision about the valve, for those with BAV or related to someone with BAV, there is an additional decision - that is what to do, if anything, with the aorta during surgery. R&N Brown above shared something very important - his asacending aorta was also replaced. If I were researching my valve, I would also be researching my aorta, and meeting with surgeons who could first of all thoroughly evaluate my aorta, including the aortic root, as well as valve choices, give me exact information and review the images of my aorta with me, and go over the choices for the valve, the aortic root, and the aorta as appropriate. If it was decided the aorta did not need to be addressed, and only the valve, I would want to understand what that might mean in my future, and how the aorta would be followed. The reason I would do all this is because of our experience first of all with my husband, his blood relatives, and others we know.
Best wishes in your research,
Arlyss
 
Ya the machinist/designer in me really likes the designed flow patterns of the On-X and the guy that want to start his own business likes the paid health care part of the survey.
I am hoping for aspirin/plavix or just aspirin as that changes nothing about my normal routine.

I do not think there is any arms of the trials that are just aspirin. And I don't believe it will be an option in the near future. The one trial that I knew of that were trying aspirin only was somewhere in Europe and it seemed to be very quietly stopped.
MY son is the patient and we have tried alot of new things, surgeries, trials,over the years, because things were pretty new and there weren't many choices, but IF there is a perfectly good valve and a relatively safe med, I would think hard about being in a trial for something that might increase my chances of having a stroke. Especially if I was young, had others relying on me ect. I personally always feared a bad stroke more than death.
Also as others have mentioned, many people seem to have problems with plavix. Everyone is different tho
 
I to have a OnX valve, in the Mitral position,hear it sometimes,doesnt bother me,Last INR was 2.1.Surgeon wants 2.0-3.0. Checked monthly.Early next year will go no Home testing.
 
Well I met with the surgeon last night and went over the program, valve, my ascending aorta (looking like he is wants to plasty it due to size) and spent another hour with his nurse walking the hospital in Tacoma. I feel as good about this as anyone can for such a major surgery.
Thank You all.
I will take part of the study and look forward to talking to those that have gone before and after me on this.
 
James, good luck on your surgery. Its good that your taking a proactive approach to this. You will do great. Good luck on the study also. When is your sugery?
 
I told them that no matter what I have to wait until after I go to the Rose Bowl. So the second week in January.
If Oregon loses to Oregon State then I may ask to do it in December. A man has to have priorities in life.
 

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