Life after Mechanical Valve --- 31 years old

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pellicle

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ACT is not "rocket science" nor is it necessary to micromanage INR.
agreed ... and by definition micromanagement is a bad idea.

OCD is good (within limits) for what I do at work (manage databases and write code), its entirely inappropriate for managing INR (or indeed most things in a healthy balanced life with other people)
 

tom in MO

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Hi Pellicle!

We are currently going to the ACC weekly for testing, I believe they use the CoaguChek XS. I am happy to go to the clinic for now (other than the copay every time) since the testing is as frequent as it should be, but in about a month they are going to back him off to testing once a month. I am not comfortable waiting that long between tests, so am researching home testing machines. Since the cardio can't prescribe a meter and strips, I am looking at purchasing a machine out of pocket, which isn't a small purchase (at least to us 25 year olds just trying to be able afford our first house). Just attempting to gather as much information as I can about cost and accuracy of the meters folks on here use. I really don't care who makes the meter or what it's called, as long as it and sourcing its supplies are reliable. Here's hoping I can either a) find a cardio that is able to prescribe or b) the clinic chain our cardio works for now sees the light and will start supporting home testing. Anyway, sorry to ramble!
Seems really strange your cardio doesn't support home testing. If you test every two weeks, he may not want you adjusting your own dosage either. You might want to discuss this more with him. My cardio supports home testing but his practice has a clinic you are supposed to call in your results to. They charge each time you call in even if there is no dose adjustment. I discussed this with my cardio, and he's fine with me not calling in my results and doing minor adjustments at home. I promised him that if I was really out of whack I'd call and he's been fine with that for awhile.

You may want to talk to your insurance company. If they support home testing, they can tell what is required for you to get one on their dollar and refer you to a different cardiologist. The FDA doesn't require a prescription for an INR tester, it's the insurance company and/or the meter supplier that require a prescription. Just like knee braces, you can buy them yourself, but if you want the insurance company to pay, it needs to be prescribed by a doctor.
 

LoveMyBraveHeart

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Seems really strange your cardio doesn't support home testing. If you test every two weeks, he may not want you adjusting your own dosage either. You might want to discuss this more with him. My cardio supports home testing but his practice has a clinic you are supposed to call in your results to. They charge each time you call in even if there is no dose adjustment. I discussed this with my cardio, and he's fine with me not calling in my results and doing minor adjustments at home. I promised him that if I was really out of whack I'd call and he's been fine with that for awhile.

You may want to talk to your insurance company. If they support home testing, they can tell what is required for you to get one on their dollar and refer you to a different cardiologist. The FDA doesn't require a prescription for an INR tester, it's the insurance company and/or the meter supplier that require a prescription. Just like knee braces, you can buy them yourself, but if you want the insurance company to pay, it needs to be prescribed by a doctor.
Thanks, Tom. Our cardio does support home testing, the chain she works under does not...not even that "call in my results" type. They are close to having a program for it, but for the time being she is unable to write a prescription for the meter and strips. We have located a source for the meter, so I think our problem is averted for now. I have reached out to insurance and there are 2 options for a rx for a home meter. one is another large clinic that we would have to change all of Mathias' info over to (and I'm not a fan of their system in general), and another is an ACC clinic about 200 miles from home. If we weren't so comfortable and confident in our current cardio's support, we would look into it. However, she has been with Mathias from the start and advocated for him when other doctors felt he was over reacting to his symptoms, so we are just not looking to change cardios at this time. I'm hoping we will get through this next few months of the annoying stuff and be able to move on from it and be able to test weekly like we want, and also test monthly at the clinic to keep up with the warfarin Rx. Thanks again for your reply!
 

pellicle

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I discussed this with my cardio, and he's fine with me not calling in my results and doing minor adjustments at home. I promised him that if I was really out of whack I'd call and he's been fine with that for awhile.
Interestingly this is pretty much the arrangement I have with my guy (although he actually had no part in working out who actually did my INR testing, but that's really a detail of how it is here). I show him my spreadsheets and hes usually interested to read through them (on my Tablet)
 
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Protimenow

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Heart_fit -- your doctor may not know about the Coag-Sense meter. Having tested both, my preference is the Coag-Sense. I find that the Coag-Sense is more accurate than the CoaguChek -- but both feature acceptable accuracy unless you have hematocrit or other problems. These are rare issues - but can cause the CoaguChek XS to not work properly.

The Roche meter (CoaguChek XS) is better known than the Coag-Sense, has great marketing behind it, and strips may be slightly easier to find (although I've had absolutely no problem finding strips).

If your doctor doesn't know about the Coag-Sense, perhaps he should. If he takes to trouble of learning about the Coag-Sense, his recommendation may change.
 

tom in MO

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Interestingly this is pretty much the arrangement I have with my guy (although he actually had no part in working out who actually did my INR testing, but that's really a detail of how it is here). I show him my spreadsheets and hes usually interested to read through them (on my Tablet)
I don't show my cardio my results. When I visit, the medical records show him when I last called in my INR. He asks how often I test during the yearly visit. I guess my testimony and continued life is sufficient proof I am monitoring :)
 

Protimenow

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Tom: if you aren't already, I strongly suggest that you keep a record of every test. I do. Pellicle does. I'm sure that many others on this forum do, too. I've been recording my test results, date, meter used (because, over the last decade since I started recording my results, I've tried many meters and quite a few labs), dosing, other things - changes in diet, medications, illnesses - that may have effect on the INR.

If your current INR doesn't demonstrate to the doctor when you see her that you're in control of your INR, showing a copy of your spreadsheet with this data WILL.

For me, when I was searching for the most accurate meter, I tried many, and having this solid record helped me to decide on one, with a strong secondary.

(FWIW - the first meter that I used, in 2009, was also pretty accurate, but was a real pain - strips required refrigeration, testing required more blood than the newer meters, and the meter was very large. Convenience and accuracy made my current choices a no-brainer).
 

pellicle

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I don't show my cardio my results. When I visit, the medical records show him when I last called in my INR.
Yeah it's similar in some ways with me too, the only difference is I maintain and own those records.

Our meetings are usually the same, everything is within parameters and we end up discussing coffee machines or something after the quick review of all the data (echo, ECG, stuff like that) ... Which is good as it means all is well.

I hope it's all going well your end too
 

tom in MO

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Yeah it's similar in some ways with me too, the only difference is I maintain and own those records.

Our meetings are usually the same, everything is within parameters and we end up discussing coffee machines or something after the quick review of all the data (echo, ECG, stuff like that) ... Which is good as it means all is well.

I hope it's all going well your end too
Thanks all is well.

Protime, my meter keeps records until the batteries are changed, but I write it down in a free log-book supplied by the same firm who gives me INR supplies. I think it's interesting that the INR meter firm thinks it's important for me to document the lot number and expiration date of the strips as well as INR, date and time. I keep track of when I self adjust to know if it worked or not.

Spreadsheets are too much like my day job and my INR a month ago has no relation to my INR today. People can't resist connecting the dots in INR graphs, but the line you draw between your INR s on the 10th and 20th is not really a statement as to what it was on the 15th. You could have gotten plastered on the 12th, vomited up your warfarin, but still came back to normal by the 20th because you didn't eat properly after your drunkenness :)
 

dick0236

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I keep a spreadsheet in order to "track" any INR trend. I don't pay a lot of attention to any one INR reading and may, or may not, make any dosing change if a single test is out of range. However, a historical trend, hi or lo, may trigger me to do a dosing adjustment.
 

pellicle

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I keep a spreadsheet in order to "track" any INR trend. I don't pay a lot of attention to any one INR reading and may, or may not, make any dosing change if a single test is out of range. However, a historical trend, hi or lo, may trigger me to do a dosing adjustment.
me too
 

Protimenow

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The Coag-Sense retains the data in memory, even if you change batteries. It stores the results onto non-volatile memory that doesn't disappear when you change batteries. The new PT2 meter has a rechargeable battery, so the risk of data loss is reduced even further.

I've been keeping a spreadsheet ever since I made my first test using a meter. I don't think that I've ever graphed the data or been driven to do so. I just prefer to keep track of my values.

Yes, if you wait ten days, or 30 days, or perhaps 6 months between tests, you don't know what happened between tests. That's why experts urge weekly testing. Each test is a snapshot of your current INR - and may provide a reason for altering the dose or, at least, perhaps for a test in three days or so, to show whether dosage changes have been effective enough.

I don't track the lot numbers of my strips (my Coag-Sense PT2 does), but, over the years, I've detected errors in strips (compared to other meters or lab results) that suggested problems with a batch of strips (my experience with the Protime meters was confirmed by other investigators, and the strips were recalled).

Maintaining records on a spreadsheet, for me, doesn't seem like work (but I don't work on spreadsheets day in and day out, so this has become routine and almost fun). I've kept records for more than a decade. I can't imagine being able to handle a bunch of books, and a bunch of pages, that have my INR records in them.

For me, weekly testing, occasional testing at a lab, and recording of any issues that may effect INR (illness, use of antibiotics, brief changes in diet, etc.) and, of course, date, time, and (in my case) meter that the test was run on or facility where a lab test was performed, is important to provide a long, running history.
 

Dcano1007

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So I had my Aortic replacement with a St. Jude at 30, 2 years ago. I have always been very active, busy and relentless.
It did change my life, by no means do I feel bad but since my surgery I have never felt as good as I did pre op, I was very healthy up until the weeks that lead to my surgery.
I do tire easily when engaging in physically demanding activities which is a bummer but I know that can improve that by doing more cardio.

Prior to my surgery I played soccer in a men’s league, can’t do that anymore due to coumadin intake. I hate working out with a passion, nothing more boring that working out. Soccer was my exercise and can’t play anymore so for now I kayak and walk plus my work required me to be on my feet and walking most of the day.

I would love be in the league again and ride motorcycles again but I know that would be asking four trouble and since my wife and kids depend on me, I need to stay alive for as long as possible.

I do not fret over my INR, I don’t keep logs and I don’t check as much as they want me to.
I drink beer as I please and eat big salads when I feel like it . I am not a big drinker so the beer is not an issue but If I eat too many greens for too many days I tend to check that I am in range. I keep a med wheel and my wife makes sure it is always filled, she also reminds my nightly to take my med. I have missed doses and have also double dosed which really scares me and has only happened x3 times.

God gave me a chance to live again so I will do just that. Whenever he is ready for me I hope I am ready for him. I just hope he doesn’t take me yet, I wanna see my rugrats grow.

life is too short, enjoy, take it easy and best of
luck!
 
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vitdoc

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I had my first aortic mechanical valve when I was 35 after a tissue valve was replaced that was placed 5 years earlier . I have been using warfarin since 1983 and I never really altered my activities. I skied advanced slopes played basketball for years and now I have been bicycling for over 15 years. I am now 71. I also hate the gym. Basketball was for me as soccer is for you.
I also did not check my INR much for years. I hated the blood tests and the inconvenience of going to the lab. Now I have a Coag Check and check my INR from time to time. Occasionally the INR is off a bit and I need to mildly modify my warfarin dose.
So, I am not sure why you can not play soccer. I agree motorcycling might be worth avoiding just because even off warfarin it is risky especially with a family. About 13 years ago I had a bicycling accident falling at 20 miles/hour. I did have a huge hematoma in my leg which took around six +weeks to resolve. I dropped about two units in my leg. I was leaving for Europe for a bike trip a week later and I went. My biking in Europe was limited but I did bike. So in all these years that was the only significant injury I had that was influenced by the warfarin.
Fell plenty of times skiing and never had a problem. So don't be a warfarin cripple but be prudent.
Get a meter and check your INR.
 

Dcano1007

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@vitdoc
Glad that you are doing well and that you have made it through all these years living such a fulfilling lifestyle.
Reason why soccer is a no go is head injuries, a lot of heading hard balls and occasionally a head butt while going for a ball, my surgeon Is also a footy, he told me that day that it would be wise to stop playing. To add to the risk, I was was a goal keeper!
I also check INR at home, got my machine the week of the surgery and have been checking for 2 years. I actually have to call in since I checked yesterday after 4 weeks, I am at 4.2, time to eat some greens and call the nurse.
 

vitdoc

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Didn’t think about the heading issues. Probably wise to not play.
Maybe some other sport? Consider bicycling. Find a local club for recreational cycling. Cycling seems to be the end point for many athletes who could not continue their sport for one reason or another.
 
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