Hi CynBrooks, I think you will like this site and I know that many on this site will benefit from your experience. There are several mothers who currently are dealing with these issues with their child. I can't imagine how tiny the first valve, at 18 months, must have been and I wonder how your parents were able to monitor your INR when you were that young. I agree that after awhile, having a valve just becomes a way of life.
Why choose a mechanical valve?
- Thread starter markp66
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Hi Rufus
Sorry you have had a rough time since your op. Hopefully things will improve. But yes, one reason why statistics are not great is because everyone is different.
I have to disagree in terms of being behind the US in heart surgery. We have some of the best surgeons in the world. Although the NHS isnt great for minor problems I think it is 2nd to none in major operations. I have spoken to a few US surgeons and they all agree. In terms of valve choice, all the new bi leaflet options are brilliant and at some point the INR levels will come down for the ATS, ON X and carbomedics valves. I know facts and figures aren't always correct but the UK has better survival rates than the US overall although only marginally.
In terms of home monitoring- they are available to buy for around £500-600 if you cant get through the NHS with the added cost of the testing strips. Even if it's just to check in between tests at the clinic, surely it will help in making sure your INR is consistent and if not, you will be able to notify the clinic at your next appointment. It seems essential for when you go on holiday. I'm not sure how your clinic isn't great at managing your INR but if this is the case do you have any other options?
My point was that in general there seems to be very little major valve related problems each year. Some reporting less than 0.5%.
I hope things stable down a little over the coming months.
Caroline-
For most people (and including yourself by the looks of it) have no problem with Warfarin. As I mentioned above there are normally very few valve related problems for most people and very rarely at a young age. There is a 4% chance per year without taking warfarin and less than 1% for under 50yrs of age. You have to remember that many strokes are also caused by coronary artery disease, high blood pressure, poor health in general so there is LOTS we can do to reduce this. Bleeding risks are also very low after the first 6 months of operation especially if your target range is 2-2.5 which is more than acceptable for all new bi leaflet valves. In fact some patients have are even lower than this from what I know.
Having a mechanical valve sounds far from perfect although if it has the chance to give me an extra 50 years then I won't be complaining.
Sorry you have had a rough time since your op. Hopefully things will improve. But yes, one reason why statistics are not great is because everyone is different.
I have to disagree in terms of being behind the US in heart surgery. We have some of the best surgeons in the world. Although the NHS isnt great for minor problems I think it is 2nd to none in major operations. I have spoken to a few US surgeons and they all agree. In terms of valve choice, all the new bi leaflet options are brilliant and at some point the INR levels will come down for the ATS, ON X and carbomedics valves. I know facts and figures aren't always correct but the UK has better survival rates than the US overall although only marginally.
In terms of home monitoring- they are available to buy for around £500-600 if you cant get through the NHS with the added cost of the testing strips. Even if it's just to check in between tests at the clinic, surely it will help in making sure your INR is consistent and if not, you will be able to notify the clinic at your next appointment. It seems essential for when you go on holiday. I'm not sure how your clinic isn't great at managing your INR but if this is the case do you have any other options?
My point was that in general there seems to be very little major valve related problems each year. Some reporting less than 0.5%.
I hope things stable down a little over the coming months.
Caroline-
For most people (and including yourself by the looks of it) have no problem with Warfarin. As I mentioned above there are normally very few valve related problems for most people and very rarely at a young age. There is a 4% chance per year without taking warfarin and less than 1% for under 50yrs of age. You have to remember that many strokes are also caused by coronary artery disease, high blood pressure, poor health in general so there is LOTS we can do to reduce this. Bleeding risks are also very low after the first 6 months of operation especially if your target range is 2-2.5 which is more than acceptable for all new bi leaflet valves. In fact some patients have are even lower than this from what I know.
Having a mechanical valve sounds far from perfect although if it has the chance to give me an extra 50 years then I won't be complaining.
Optimus
Well-known member
Bina,
Doctor is HAPPY!!! Not worried about the rhythm, putting me back on Multaq for 4 weeks (trial), then redo holter to see if it helps. If not, I could try cardioversion, different meds, or just wait it out and see for awhile.... He said i am doing very well, and he is happy!!!!! I feel good about it all, but obviously would like to be in sinus rhythm
How was your echo? My Doctor said he is expecting my heart to continue to remodel and heal and reduce in size.....very optimistic! Said as long as I feel good, that's what matters most. Since I am on Warfarin, the fib isn't that big of an issue unless it causes symptoms that bother me too much. The sound of my valve or pounding I feel may contiune to decrease with time...Susan.
Bina,
Doctor is HAPPY!!! Not worried about the rhythm, putting me back on Multaq for 4 weeks (trial), then redo holter to see if it helps. If not, I could try cardioversion, different meds, or just wait it out and see for awhile.... He said i am doing very well, and he is happy!!!!! I feel good about it all, but obviously would like to be in sinus rhythm
Susan.
Hey, that is good news that your doc is so supportive and willing to try things with you. Those rhythm issues are just SO
frustrating and a good attitude will help alot.
And yes I got my echo report in my hands and it is good...Thanks for asking.
I have the same valve, same size, too. The Regent is their newer valve; the Masters is the older one. Interestingly enough, St. Jude has an animation of how the valve looks when it's working. You can see it here.
Also, you can email St. Jude for a sample valve and they'll send you one. It's plastic, but it gives a good idea of what the real thing is like. Great conversation starter if you're at a particularly dull party.
I have the same valve, same size, too. The Regent is their newer valve; the Masters is the older one. Interestingly enough, St. Jude has an animation of how the valve looks when it's working. You can see it here.
Also, you can email St. Jude for a sample valve and they'll send you one. It's plastic, but it gives a good idea of what the real thing is like. Great conversation starter if you're at a particularly dull party.
Thanks for posting that video link.....it's a good one for sharing with people who just don't understand what we have
going on in our chest.
I have the same valve, same size, too. The Regent is their newer valve; the Masters is the older one. Interestingly enough, St. Jude has an animation of how the valve looks when it's working. You can see it here.
Also, you can email St. Jude for a sample valve and they'll send you one. It's plastic, but it gives a good idea of what the real thing is like. Great conversation starter if you're at a particularly dull party.
I have a carbomedics valve and they sent me the same size valve that I have along with 3 large books on how this valve came to be and the tools/instructions you need to install one.
The joke around my house is "at least we now have instructions on how to fix you......if we could only get past the blood"
and "maybe we should use it as a Christmas decoration".But yes, if you ask the manufactures for a sample of a valve they will send you one.
Optimus
Well-known member
I have the same valve, same size, too. The Regent is their newer valve; the Masters is the older one. Interestingly enough, St. Jude has an animation of how the valve looks when it's working. You can see it here.
Also, you can email St. Jude for a sample valve and they'll send you one. It's plastic, but it gives a good idea of what the real thing is like. Great conversation starter if you're at a particularly dull party.
Well....that's three of us now!!! HEHE. I actually did email them through their website to ask for a sample valve. It probably takes awhile to hear back from them! Thanks....
S.
Jkm7
Well-known member
I wonder what the 'wholesale' price of the valves is? Can't be very high if they are mailing samples to patients.
Interesting to look back on my bill to see what insurance paid for my bovine valve.
Interesting to look back on my bill to see what insurance paid for my bovine valve.
The sample valve St. Jude is kind enough to accommodate patients with is plastic. I would guess it costs pennies to produce. Do you really think they would send a real one?
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heartstream
Active member
Very encourageing information. Would this also apply to the tricuspid valve? I go back to see my Surgeon Tuesday for my second Op date. Hopefully June next year. He seems to think mechanical because I am only 43. I was not sure because of the long term effect of the Wharfarin and because I like and used to get involved with contact sports.
Thanks for info
Ron
Thanks for info
Ron
I suppose it is possible to get a mech valve to replace a tricuspid valve, but the majority of surgeons, usually reccomend tissue valves for Tricuspid and pulmonary valves, regardless of the patients age, because the pressures are much lower on the right side of the heart. Also since the pressures are much lower and for other reasons, the good news is tissue valves tend to last even longer in the pulmonary and tricuspid positions.
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Julian
Well-known member
Can TAVI's be performed in the tricuspid position?
They are working on percutaneous Tricuspid valves and have done some in that position already so most likey will be available sometime.
Altho they aren't TAVI since the "A" stands for aortic valves- transcatheter aortic valve implantation
