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I've had all of my surgeries at Texas Children's Hospital in Houston, Tx. Denton Cooley has done my 3 surgeries and Charles Mullins was my Cardiologist. I had an Aortic valve replacement on 5/16/99 (19 years old). They used the St. Jude valve and I'm now 55 years old so it ahs lasted me 36 years. Denton Cooley did say that he was going to put in a valve that will last me a lifetime. I do have to be on Warfarin and continue to have it monitored. Once you get it stable you may only have to get it checked every 90 days, depending on your doctor. I'm very thankful that they were able to wait until I was an adult to have the valve replacement. They new when I was 5 that I would need to have it replaced but kept saying they want to make sure they had a good valve to put in me. I was able to remain pretty stable until I was 19 with no health issues with my heart (not getting worse) and that bought me some time so that they could put in the St. Jude valve. If I needed one when I was younger I know a pigs valve was mentioned at one time. But the St. Jude valve was getting better and luckily I could wait for that one. I think I was around 11 or 12 when they said they are looking at the results of the St. Jude valve and said that's the one we would probably use.
You DO NOT wait 90 days between INR tests. The safest interval is one week, and a lot of us self-testers (and self-managers) do it with this frequency.
An INR below 2.0 can cause a stroke or pulmonary embolism or other life threatening event in as few as 10 days (according to a study from the Duke Clinic). An INR above 5 or 6 (it's arguable how high is the minimum for problems) will cause potentially dangerous bleeding and possibly fatal hemorrhaging. THIS can happen even more quickly than stroke, but is more obvious - blood in urine, excessive bruising, excessive bleeding from cuts, and other worse signs.
Improper dosing, improper compliance to dosing (skipping a day, doubling doses, etc.), and other factors (diet, activity, and who know what else?) can change the INR.
More frequent testing is imperative --- it's dangerous to test less frequently than a week or two -- and some medical protocols STILL say that if your INR is in range for a certain period of time, it's safe to test less frequently.
Home tests cost about $5 or so a week. I'm not sure what labs charge, but is your life not worth the cost of a lab test (if you can't self-test)?
My St Jude Valve has been in me for 32 years. Others have lasted much longer. I'm pretty sure that my body will fail before the valve does.
An INR below 2.0 can cause a stroke or pulmonary embolism or other life threatening event in as few as 10 days (according to a study from the Duke Clinic). An INR above 5 or 6 (it's arguable how high is the minimum for problems) will cause potentially dangerous bleeding and possibly fatal hemorrhaging. THIS can happen even more quickly than stroke, but is more obvious - blood in urine, excessive bruising, excessive bleeding from cuts, and other worse signs.
Improper dosing, improper compliance to dosing (skipping a day, doubling doses, etc.), and other factors (diet, activity, and who know what else?) can change the INR.
More frequent testing is imperative --- it's dangerous to test less frequently than a week or two -- and some medical protocols STILL say that if your INR is in range for a certain period of time, it's safe to test less frequently.
Home tests cost about $5 or so a week. I'm not sure what labs charge, but is your life not worth the cost of a lab test (if you can't self-test)?
My St Jude Valve has been in me for 32 years. Others have lasted much longer. I'm pretty sure that my body will fail before the valve does.
carolinemc
Well-known member
I agree with you on the INR, I never wait no 90 days. They may have me wait a few weeks from the lab, as long as it is a good reading. I was off this last week, 1.7, go back within two weeks. But never 90 days. Too dangerous for my taste.
carolinemc
Well-known member
St. Jude can last entire life, just depending on many factors if it fails. I was 36 in 2001 when I got mine and now 58. Now looking at the Mitral Valve calcification. We are keeping an eye on it. Good on your years and good luck on many more.
I definitely agree with Protimenow statement. That's why I liked it. I should have been clearer with what I meant. Some doctors still want you to come in even if you're doing the testing at home. That is what I meant about being stable but I wasn't clear. Thanks everyone for clarifying and giving clarity for others.
If I had an INR of 1.7, I would increase my dose slightly, keeping it at the same slightly increased level (probably .5 mg), then test in 3 days.
I would be uncomfortable with an INR of 1.7 for more than a few days.
One thing I would NOT do is do a large 1 mg or more increase to bring the INR up. First - it would take three days to see the result of the larger dose, and second - it may put your INR management on a 'roller coaster' making it tricky to get your INR where you want it --- unless you know what you're doing (making small changes, instead of large ones, and testing a few days later).
One week -- maybe two - should be the standard.
I would be uncomfortable with an INR of 1.7 for more than a few days.
One thing I would NOT do is do a large 1 mg or more increase to bring the INR up. First - it would take three days to see the result of the larger dose, and second - it may put your INR management on a 'roller coaster' making it tricky to get your INR where you want it --- unless you know what you're doing (making small changes, instead of large ones, and testing a few days later).
One week -- maybe two - should be the standard.
Personal anecdote - After my TIA, my INR was about 3.2 (I say 'about' because the readings at the hospital were different each day).
About 10 days later, I broke two ribs. INR at the hospital was a surprisingly high 3.7. I thought it was a fluke, wasn't admitted, and maintained my 5.5 mg dose that has kept me in range for months.
Today, about 10 days later (yeah, I know I should test every week on the same day), my INR was AGAIN 3.7. I'm thinking that this may be because my level of activity has dropped after I broke my ribs.
I am reducing my daily dose to 5 (from 5.5). It may not drop a lot (I expect, maybe, 3.2 in a few days), but I am more comfortable with an INR at the top of my range than I would be if I reduce my dose by 1 mg and drop in the low 2s (again, I don't really know how much EITHER drop in dose will change INR).
pellicle
Professional Dingbat, Guru and Merkintologist
increasingly I feel that your TIA wasn't related to INR ...
pellicle
Professional Dingbat, Guru and Merkintologist
pellicle
Professional Dingbat, Guru and Merkintologist
to use this to answer the general question posed here back in a previous time
previously he'd say over a billion actuations. I asked and he answered:
so basically if you assume HR average of about 90bpm per day that works out to be about 20 years before its got a billion actuations.
Agreed.
When it happened, my INR was 3.2, and it was consistently above 3.0 for at least a month before it.
I don't currently have any idea (other than genetics?) what caused it. I'm pretty sure it was ONLY Transient. I don't think there were any residual effects -- other than scaring the crap out of my wife and reminding me how much I HATE being in a hospital - no matter how good the nursing and support staff are.
pellicle
Professional Dingbat, Guru and Merkintologist
It's always frustrating when you can't find a cause and so can't work out how to take steps to avoid another
Superman
Well-known member
Disregard the angry face. They show up from certain people at inexplicable times. And an explanation is rarely offered. Sorry that was your first welcome to this forum.
This post might get one too. After a while it becomes a dare.
Late to the party, as always. Just celebrated 27 years with my St. Jude's bi-leaflet mitral and it's still clicking along. As others have mentioned, my cardiologist and EP are just keeping an eye on the dacron sutures but they didn't see any growth or abnormality. Issues I've experienced are likely related to the scar tissue throwing off my sinus rhythmbut the valve seems to be doing it's thin.
Of course, what we're all missing is that those who died because their valves failed aren't on this forum (of course). We're the success stories -- although I really don't know of any actual failures.
Statistics can be funny -- in some studies, it's not always clear why people drop off studies -- is it because their contact information has changed and they can't be reached?, is it because they don't want to respond to update requests?, are they dead or incapable of responding? For some anecdotal studies, perhaps, the ones who respond are the ones still alive.
Of course, a lot of other studies are more reflective of actual data.
When I ran the Cancer Registry at a major hospital, where we tracked all patients, following up with them annually for updates, checking for medical records updates, contacting referring hospitals, etc., we also had a full time employee going through obituary notices. This was long before the days of electronic medical records.
My point here, whether valid or not, is that we can't always assume that those of us with success to report may not necessarily be representative of the actual success rate. We have the FDA, and extensive testing BEFORE the valves are approved (and probably ongoing long term studies) to attest to the success of the approved prosthethic valves.
Statistics can be funny -- in some studies, it's not always clear why people drop off studies -- is it because their contact information has changed and they can't be reached?, is it because they don't want to respond to update requests?, are they dead or incapable of responding? For some anecdotal studies, perhaps, the ones who respond are the ones still alive.
Of course, a lot of other studies are more reflective of actual data.
When I ran the Cancer Registry at a major hospital, where we tracked all patients, following up with them annually for updates, checking for medical records updates, contacting referring hospitals, etc., we also had a full time employee going through obituary notices. This was long before the days of electronic medical records.
My point here, whether valid or not, is that we can't always assume that those of us with success to report may not necessarily be representative of the actual success rate. We have the FDA, and extensive testing BEFORE the valves are approved (and probably ongoing long term studies) to attest to the success of the approved prosthethic valves.
pellicle
Professional Dingbat, Guru and Merkintologist
I love the good news stories
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Well done! That is great to hear.
carolinemc
Well-known member
And if you ever have to do lab, be sure to stand firm with the clinic nurses on the dosing, for many in the past here have had nurses dosing to closely, like change dose, had the patient come back with two to three days and would retest, never giving the change in dosage a chance to work. I am very proactive in that stance and when needed, I do mention it when one tech seems lost. And I choose to go in.
When I HAD to go to an anticoagulation clinic, I was already self-testing.
Basically, I went there to confirm my meter results and to prescribe warfarin.
I ignored their advice, followed a more reasonable dosing schedule that I had been using for four years before the TIA, and amazed them when I went back for testing that my INR was always in range when I went for testing - I was 'Mr. consistent.' I didn't have the heart to tell them that I ignored their dosing advice. (Somehow, I was able to cut the cord from them -- and by then, according to their protocols, I was supposed to come in for testing EVERY TWO MONTHS.
Sometimes you just have to nod your head and say 'yes' and then go on to do what you know (or strongly believe) is right.
You might also try this futile exercise -- EDUCATE the nurses about the Warfarin half life, and how the results of today's dose won't show up for three or more days. Of course, THEY know more than YOU do - even when they're wrong.
You might remind them, too, that it's YOUR life that you're managing your INR for, and that you may have actually learned more about INR management than they may have gotten from a 20 year old protocol that they still follow. If they ask you about leafy greens when you first get there, you KNOW that you're in trouble.
Basically, I went there to confirm my meter results and to prescribe warfarin.
I ignored their advice, followed a more reasonable dosing schedule that I had been using for four years before the TIA, and amazed them when I went back for testing that my INR was always in range when I went for testing - I was 'Mr. consistent.' I didn't have the heart to tell them that I ignored their dosing advice. (Somehow, I was able to cut the cord from them -- and by then, according to their protocols, I was supposed to come in for testing EVERY TWO MONTHS.
Sometimes you just have to nod your head and say 'yes' and then go on to do what you know (or strongly believe) is right.
You might also try this futile exercise -- EDUCATE the nurses about the Warfarin half life, and how the results of today's dose won't show up for three or more days. Of course, THEY know more than YOU do - even when they're wrong.
You might remind them, too, that it's YOUR life that you're managing your INR for, and that you may have actually learned more about INR management than they may have gotten from a 20 year old protocol that they still follow. If they ask you about leafy greens when you first get there, you KNOW that you're in trouble.
