Jennie
Well-known member
Yes. It was an aortic valve from a human donor. Processed a bit, washed of its cells and cryopreserved.
On-X valve 6 weeks later...
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Jennie
Well-known member
Very interesting. Yes, mine was cryo-preserved and washed of its donor cells. I was in a study for about a year, but that was canceled because the FDA pulled these valves (the aortic ones) off the market. People were getting dangerous fungal infections from donor tissue (for knees, backs, etc.), so the FDA wanted all this tissue to be sterilized. Which would basically destroy the donor valves. The pulmonary valves still were available, but the aortics were thicker and harder to wash of cell? Memory is a bit fuzzy here.
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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!!
I'd recommend you make sure that you get a doctor-recommended range and stick with it. The correct INR range is dependent upon the valve, your body and other comorbidities that may exist. Your proper INR range is serious business, a matter of life and death both for high and low INRs. The members of this forum are ignorant of your body, your comorbidities and the body of literature on your valve. The members of this forum's knowledge only extends to what is available on the open internet, most if not all, do not have access to the full body of literature.. Most if not all do not have access to all the manufacturer's literature. They are also not trained to think like a doctor. Question your doctor if you believe something is incorrect based upon what you learn here, but if in doubt, I'd suggest you believe the expert that you are paying for. If you don't trust your cardio find another one. Self-dosing is an accepted practice, setting your INR range should be done by a professional.
What Tom said above is wrong on so many levels. SOOO MANY levels.
If you are committed to following what he said then I would advise you get the opinion of 3 doctors and not just one. Additionally, make sure those doctors aren’t pushing the On-X valve simply because it is the latest AND make sure that they’ve read and fully comprehended the Proact study. They’ll quote the outcome … but most will NOT have a full understanding of the study. Fact.
If you are committed to following what he said then I would advise you get the opinion of 3 doctors and not just one. Additionally, make sure those doctors aren’t pushing the On-X valve simply because it is the latest AND make sure that they’ve read and fully comprehended the Proact study. They’ll quote the outcome … but most will NOT have a full understanding of the study. Fact.
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pellicle
Professional Dingbat, Guru and Merkintologist
Hey there, lots of things to discuss here. So in no particular order yes the concern about infections from a fungus is real in transplanted tissue (oops, better not let the lovers of The Ross in on that) but IIRC that's pretty rare and may even be caused by spoors (hard to fully remove) in the atmosphere because fungal infections inside the body are associated with other quite obvious symptoms (note: in the body, not on an exterior surface like skin, lung lining, mucosa or GI tract).
I'm not sure if you're aware of the morphology (Morphology is a branch of biology dealing with the study of the form and structure of organisms and their specific structural features) of the valves but its very interesting. For a start they have no vascular system and even more interestingly are not made of cells found anywhere else in the body (see this post for an intro and a link for further info), so I'm not sure why washing would be done or what damage it would do.
Interesting
Correct - pig valve. I broke the pig valve, and then the pig valve broke me. (?) I think it was described as flailed.
pellicle
Professional Dingbat, Guru and Merkintologist
failed perhaps, I'm glad it didn't break off (that would have been bad) or cause some calcification deposits to break off (and drift into the wrong place blocking blood flow in the brain... slightly worse).
Either way I'm glad none of that happened
I asked because " broken leaflet" is usually used for (the very rare) case of a mechanical leaflet breaking (... say a hinge).
Best Wishes
Superman
Well-known member
Your Doctor will set your INR range very generally and based on general guidance. For aortic, if they’re older they’ll set it at 2.5 - 3.5. Some younger might say 2.0 - 3.0. Doctors that buy the On-X marketing and warfarin boogie man will okay the 1.5 - 2.0. The next Doctor I meet that actually reads my chart and is familiar with my case before I meet them will be the first.
They’re like the financial planners that claim to have some unique to you financial plan, but in reality it’s the same cookie cutter X years old, X years from retirement, here’s your recommended asset allocation and off you go. But they sell it like it’s tailor made to fit you. I was in that industry for a few years. The formula driven stuff and how to sell it is the behind the scenes literature that the customer or patient doesn’t see.
Things don’t generally become tailor made for your unique medical situation until there’s a real problem that requires solving. Most of us just aren’t that unique.
pellicle
Professional Dingbat, Guru and Merkintologist
Jennie
Well-known member
I didn't realize the cells here are unique. Huh. The idea of washing the cells out of the valve, leaving just the structure there, was, so I was told, that it would be less likely to "reject" the valve. I use that term loosely. Meaning, that it wouldn't view it as foreign. And it would repopulate with my cells, making it a longer-lasting tissue, more close to my natural valve. The study was having blood taken every so often, and looking at levels of antibodies to see whether my body was having more or less of a reaction against the foreign object.
Here is the study. Dr Zehr was my surgeon, I was the first in April 2002:
https://www.jtcvs.org/article/S0022-5223(05)00786-5/pdf
You're welcome Jenny
Your cardiologist office is 'worried' if your INR is over 2.0?? What worries them? It's not like you're at any risk with an INR below, perhaps, 3.5 or 4.0. Keeping your INR below 2.0 is a risk that probably shouldn't be taken (I don't have an On-X, others have shown studies of negative consequences that occurred on patients with On-X valves who kept INR in the recommended ON-X range). You probably can't educate your doctor's staff - if it were me, as you do, even with an On-X, I would be more comfortable with INR above 2.0 - even on the Coag-Sense.)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!!
Welcome to the forum.
Well I am "older" with an aortic valve and my range is 2-2.5 not the 2.5-3.5 you quoted. My valve was originally 2-3, but it's an old model and historical data indicated that 2-2.5 was just as good. Despite what some on this board claim, I find it easy to maintain that range. My cardio says the INR range is not one size fits all, it depends upon you, your valve position, your valve make/model and your comorbidities.
Superman
Well-known member
Is your cardiologist older? The older guidelines were 2.5 - 3.5 and some older cardiologists haven’t moved from that. Could also be regional. I wasn’t referring to older patients. Sorry if that wasn’t clear.
pellicle
Professional Dingbat, Guru and Merkintologist
you know, this still makes me double take ... but I know now :-D
The surgeon who said 2-3 was ~50yo; the cardiologist who said it's changed to 2-2.5 was ~65. When I asked the surgeon about the discrepancy he said that he doesn't manage warfarin for heart valves, that's the cardio's area of responsibility.
Really, how much harm would going ALL THE WAY UP TO 3.0 (or 3.5) really do?
With an allowed variance of 20%, a 2.0 could, conceivably, be as low as 1.6. Do you really feel safe with an INR that might be dangerously under 2.0?
I certainly wouldn't be.
But it's YOUR life, and if you are comfortable with a low INR, and don't understand that having an INR of 2.5 - 3.5 won't significantly change any of your activities, go with the low INR.
With an allowed variance of 20%, a 2.0 could, conceivably, be as low as 1.6. Do you really feel safe with an INR that might be dangerously under 2.0?
I certainly wouldn't be.
But it's YOUR life, and if you are comfortable with a low INR, and don't understand that having an INR of 2.5 - 3.5 won't significantly change any of your activities, go with the low INR.
It's not your daily activities it's the non routine. Such as the car wreck that leaves you bleeding out. With an INR of 3 you have only 1/3 the time to get it stopped as a normal person. Dead in 45min becomes dead in 15min. Think it won't happen to you? I just saw one yesterday. If I had been 1-2 seconds earlier, I would have been the one nailed by the driver who blew through the intersection.
I've been at INR of 1 twice for operations. No problems. My valve type is "robust" per my surgeon and cardio.
Not exactly.
My understanding is that the INR is more significant for SMALL wounds - cuts, scrapes, bruises, things like that. Yes, you'll bruise more - it's because of damage to the capillaries and slower coagulation for these tiny vessels. Surgeons want the INR below 2 to slow down the bleeding during surgery.
If you're in a major accident, the coagulation cascade isn't triggered in the same way that it would be in a small cut or bruise. If you have an injury bad enough that you'll bleed out in 45 minutes (your example), you'll still bleed out in 45 minutes.
Catastrophic injuries should clot (if they clot at all) in the same amount of time whether your INR is 1.0 as it does if the INR is 3.0.
NOBOG, Vitdoc or another MD, or Pellicle - please correct me if I'm wrong. I don't think I am.
My understanding is that the INR is more significant for SMALL wounds - cuts, scrapes, bruises, things like that. Yes, you'll bruise more - it's because of damage to the capillaries and slower coagulation for these tiny vessels. Surgeons want the INR below 2 to slow down the bleeding during surgery.
If you're in a major accident, the coagulation cascade isn't triggered in the same way that it would be in a small cut or bruise. If you have an injury bad enough that you'll bleed out in 45 minutes (your example), you'll still bleed out in 45 minutes.
Catastrophic injuries should clot (if they clot at all) in the same amount of time whether your INR is 1.0 as it does if the INR is 3.0.
NOBOG, Vitdoc or another MD, or Pellicle - please correct me if I'm wrong. I don't think I am.
