How did you discover your valve issue?

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MdaPA

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ANYONE weighting in on this, and finding labs are coming up not exactly what the HOME-TESTing numbers are? and what numbers are coming up, PLEASE share here!!!
Check-out this thread:
Coag-Sense versus CoaguChek xs and labs

is there anyone here that give us more of an insight to exactly how those "lab tests" are done, in comparison to how they are suppose to be done.
Here is how it's done at LabCorp:
005199: Prothrombin Time (PT) | Labcorp

Not sure what you mean by "how they are suppose to be done"?
 

sharky7

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Check-out this thread:
Coag-Sense versus CoaguChek xs and labs


Here is how it's done at LabCorp:
005199: Prothrombin Time (PT) | Labcorp

Not sure what you mean by "how they are suppose to be done"?
first please allow me, THANK YOU, HHO. so than, I figure with all of the labs out there, and that we all use, I never heard or seen any type of standard to the way LABS do the INR testing, at least in part of what I have seen and heard was, it can very easily be done wrong, and if its not done in the same and exact manner, the result are not the same, and I mean by that, not the same in a bad way...that for all of us trying to stay within "range". see what I meant now? i hope.
 

pellicle

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I never heard or seen any type of standard to the way LABS do the INR testing,
they (should) comply with WHO standards. There are multiple "reagents" used which give different clotting times based on the chemistry of that reagent. These are then corrected to an ISI standard.

Useful link here.

Further this is from a Roche publication (which I've posted here a few times over the years ... enough that its on a server for quick referral



It is for these reasons that I regularly repeat the mantra of "measuring INR is not like measuring a piece of steel" ... its much fuzzier than that. Thus I always say "shoot for your target" don't sit on the boundaries of a "range"
 
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KatherineA

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I went for a routine and much anticipated physical in January 2015. I was very excited because I had lost a lot of weight I have been working out with a trainer I was finally getting some muscle I felt like I was in the best shape of my life.

My regular doctor couldn’t see me so I saw a new young resident who listen to my heart and said oh my goodness your murmur is so loud. And I can tell it’s on your aorta. This is very serious you must have it checked out by a cardiologist ASAP.

I laughed and said I have told every doctor every year that I have this murmur and they always say I don’t worry about it until it hurts.
She looked very shocked and said if it hurts you’re going to be dead if it’s what I suspect so you need to go see a cardiologist now

The next week I went to see my eye doctor and realized hey my left eye sees only gray in the center. My right eye had compensated for macular hole for probably about 2 to 3 months. Give or take. The Hi surgeon said you have to have surgery immediately.

but there was this whole deal that I had of course not seeing a cardiologist yet. And no one had any idea why my murmur was so loud.

The eye surgeon agreed to do the surgery and my regular doctor signed off on it, if I swore on a stack of Bibles to see a cardiologist right away if I didn’t die during the operation so I did.

Bummer aortic stenosis and a bicuspid valve at medium moderate. It progressed quickly after 2017. To surgery 1/7/20
 

Protimenow

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I would love to know and ask you, what the meaning of that is, "significant differences". I also and at least 2X it has happened. I check the same day that I give blood to the VA, and it is about 0.5, or so lower then what my self testing comes back with. is this what you meant? and they have me I THINK too tight on what my INR needs to be, 2.5-3.5......I think 2-4 INR would do the trick, and keep me safe, and would be an easier target!!!

ANYONE weighting in on this, and finding labs are coming up not exactly what the HOME-TESTing numbers are? and what numbers are coming up, PLEASE share here!!!

AND another and very good question people here also, i think want to know, is there anyone here that give us more of an insight to exactly how those "lab tests" are done, in comparison to how they are suppose to be done. example-my home test]i prick my finger and my machine informs me I have a certain amount of time to place blood onto strip! The VA LAB take my blood then the lab gets, i have no idea even how long it takes the lab to even get it, and once they do, how long it takes them to get to it and test it??? [at my VA those places are not even on the same floor, they draw on 1st floor, and the LABS are on 3rd floor!]
HHO
A few answers - I consider a 20% difference between lab and meter to be significant. In the case I mentioned, BOTH meters gave results that were within 20%, but the results on the meters were more than 20% apart.

Not all labs know how to properly handle the blood taken for an INR. I've had one lab report that my INR was 7.1. It wasn't. I knew it wasn't. My meters told me that it wasn't. My guess was that the student who handled the blood may have let it get too warm, or put it into a metal box that the lab's couriers use to hold the stuff before it gets picked up and taken to the lab, or some other type of mishandling resulted in the ridiculous result.

I've run into a lab that at one time reported a 5.1 - both for me, and another of the doctor's patients. Again, the lab may have been wrong, or the blood taken at the doctor's office was mishandled between collection and testing.

No testing - either by a lab, or hospital lab, or meter can be considered to be absolutely right. Each method uses a reagent - which causes the blood to clot - and a value is assigned to the reagent depending on how long it takes for a clot to form. However, even though reagent providers do their best to create an accurate value, it's still a matter of educated guessing, rather than an absolutely accurate value.

Because any INR should be within 20% of accurate (whatever that is), a slight miscalculation of the reagent value should have little clinical effect.

The strip manufacturers also test the reagents on their strips. This is the reason that the Coaguchek XS strips come with a chip - the chip gives the meter a value that is calculated against the time for the 'detected clot.' Different shipments may include different chips.

Coag-Sense doesn't use a chip - instead, a value is printed on the bottom of each strip, or for the newer meters, an NFC tag on the box provides the necessary information about reagent adjustments. The new meter (PT2) also asks the person doing the testing to confirm information printed on the foil 'bag' that each strip comes in.

The original Coag-Sense meter (the PT1) reads the code on the strip - it doesn't have the ability to read NFC codes from the box, or ask for confirmation of lot number.

Both meters, then, also adjust the meter's value to accommodate for the value of the reagents.
 

brijeshb

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5 years ago, just 4 weeks after our first was born, happy times became troubled times. After a week of feeling incredibly tired, I experienced fever of 41 oC for a weekend. Terrible, felt I was dying. Fever dropped but kept feeling really ill for weeks. Had low grade fever, nightsweats to the point the bed was soaking and lost 15Kg in body weight. Knew something was really wrong but GP kept just looking at my somewhat elevated CRP value saying it had to be a simple viral infection. I am never ill like that, hack, never called in sick in my life. After 6 weeks I insisted on referral to the hospital, GP had a last good listen to my heart after which he sent me directly to A&E with a letter. After full day of tests, at 7pm a cardiologist showed up at my bed explaining I was born with bicuspid AV and TTE had shown there was an infection of the valve. Had six weeks of IV penicillin, had TOE on last day and got cleared by infectious disease doctor. The day I thought I was clear of infection a bit of the, what I reason was by then a very brittle AV, broke of and caused an infarction (fortunately) in my right upper thigh. Ten days later I had OHS. After the St Jude regent Mechanical was put in I had two bleeds, first one they took me back in, second time I took a thorax drain by CT-scan guidance. Altogether I spent 11 weeks in and I just realised 28th of October was 5 years ago since surgery 💪🏻. The bug they found was streptococcus gordonii, guess what, the Monday before I felt tired and got my first high fevers in July that year I saw the dental hygienist….endocarditis is pretty much a risk for all of us so felt it was good to mention a few details that should ring alarm bells should anyone ever be unlucky enough.
My story is very much similar to yours . I had my AVR with On-X metallic in Aug 2019 .
 

AZ Don

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At 51 I went for my first colonoscopy and found I had stage 1 colon cancer. After it was removed I had a follow up PET scan. The Dr called me to say that it was clear, everything was fine. I asked for a copy of the test results and actually read the whole thing (1 page) rather than just the summary. Buried in the middle it said dilated aorta 4.7cm. I thought that didn't look good so I googled it and scheduled a follow up with my primary and then a surgeon. It was actually 5.0 - 5.1 with a BAV which was the surgical criteria at the time (2013), so I had a valve sparing surgery as my valve was well functioning (now moderately leaking).

Always ask for copies of test results. 3 Dr's reviewed those test results and not one of them told me that I had an aortic aneurysm!
 

Chuck C

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Always ask for copies of test results. 3 Dr's reviewed those test results and not one of them told me that I had an aortic aneurysm!
I could not agree more. Always ask for copies and always read the entire report and do your best to understand the details of the report, asking questions where needed.

It is very disturbing that all three doctors missed the details of your aneurysm in your report, but I am not at all surprised. I have had several things missed in blood work, being told that all is good, only to look at the report myself and learn otherwise, for example that I have inherited severe dyslipidemia . My first cardiologist did not like giving me the reports nor did he like going over specifics with me. He reviewed my first echo and told me I had moderate aortic stenosis, but based on the fact that I set the record on his treadmill at 19+ minutes, he expected I would not need surgery for 5, 10 or even 20 years. He also told me not to worry too much about the pressure gradient, as he has patients at 90mmHg who are still doing fine.
He gave me a funny look when I asked for a copy of the report- clearly not something that he was comfortable with. He was of the school of thought that doctors get the reports and then tell the patient what they need to know. It turns out that the echo showed an aortic valve area of only 1.0cm2, which is right on the border between moderate and severe. There is no data in the world which would suggest that a BAV patient with a valve area of 1.0cm2 won't need surgery for 5-20 years, regardless of stress test performance. I eventually fired him and needed valve surgery just 20 months after that consultation.

At my current clinic, all reports are immediately uploaded into the patient portal for easy access. My current cardiologist welcomes a full discussion regarding every detail of my reports and loves to discuss published data in detail with me.
 

Pete81

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My story is very much similar to yours . I had my AVR with On-X metallic in Aug 2019 .
Unfortunate enough I hope that in your case they found out a bit quicker you had IE on you BAV but because you said ‘similar’ I take it took a while for you too. Surgery went all good? What INR target was set for you for your On-X?
 

pellicle

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Hi
This is an interesting back story

The Dr called me to say that it was clear, everything was fine. I asked for a copy of the test results and actually read the whole thing (1 page) rather than just the summary. Buried in the middle it said dilated aorta 4.7cm.
Lucky catch and I'm sure glad you found it. However this is a well known problem and I hope we see more reviews by AI first sooner than later.


Note the date of publication.
 
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pekster11

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In 1983 I think it was , as a 9 year old
I had tonsillitis and the GP picked up a heart murmur...was then referred to the hospital for further investigation.....that's how they found out
Once it was confirmed I was pulled out of the school football and athletics teams :(
 

AZ Don

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Lucky catch and I'm sure glad you found it. However this is a well known problem and I hope we see more reviews by AI first sooner than later.
Thanks. Yes, I think AI would be helpful. In my case the radiologist saw that I had a dilated aorta and put it in the report but for some reason left it out of the summary. I think the Dr's only read the summary.
 

brijeshb

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Unfortunate enough I hope that in your case they found out a bit quicker you had IE on you BAV but because you said ‘similar’ I take it took a while for you too. Surgery went all good? What INR target was set for you for your On-X?
The GP I met first thought it was a seasonal infection and just gave me some oral antibiotics. Two weeks later I met another GP who referred me to a cardiologist who confirmed BAV IE post echo and TEE . I was then put on 4 weeks of IV antibiotics to get the infection out completely . Surgery went all fine and my target INR is between 2 and 3 with 75 mg aspirin also
 

bizinsider

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I was around 25 in the very late 1970s. Standard physical. Murmur, "nothing to worry about."

At the time I was in an HMO in Minnesota. It kind of freaked me out to know something was wrong with my heart. I got a physical every year since I was a kid and nobody ever picked it up. This doctor, who came from a famous family of cardiologists, prided himself in being able to hear them early... a skill, he said, he had picked up in the Army.

That was great, but... I had to fight the HMO to let me get a further diagnostic test. After some time they let me get an echo (2D at the time).

I got the echo, left the HMO and have had it monitored it every year since. It was mostly thought to be a "probable" bicuspid, because my body structure made it difficult to see exactly what it was. A CT scan/MRI or two was more definitive that it was bicuspid.

Over the years we moved to a variety of cities, and multiple times bounced back and forth between the east and west coasts. As a result, I saw a lot of different cardiologists and internists. It wasn't until our final move back west, in 2013, that the head of cardiology at UCSD in San Diego suggested I get a CT to get a base line on my aorta, as well. After all, with that bicuspid...

Turns out I had an aneurism, about 4.5cm. So... we watched it multiple times a year as it grew. But we equally watched the heart, especially the left ventricle... the goal was to make sure it didn't expand – at least not to the point of no return. And, oddly, in later years I was always told that my regurgitation looked worse than it actually was. But nobody knew why.

As time went on the aneurysm grew, I ultimately went on the 4x a year scan plan, alternating MRIs with echos.

Long story short - two years ago as the aneurism was around 4.8-4.9 my cardiologist suggested "lets do it again in 3 months."

But I sensed something changing in my body. I considered myself asymptomatic, but started to feel some pressure when I walked up VERY steep hills. My recovery time was taking too long.

At the time I had consulted with Cleveland several times for a second opinion. In the past the surgeon there said, "next year." This time he suggested we make an appointment and fly out for an in-person assessment.

This was February 2020. After the series of tests there, the surgeon and the cardiologist suggested it was time to start getting serious about surgery. The cardiologist at Cleveland said it should certainly be done by the end of the year. My daughter was having a baby in July, so I said to the surgeon, "Could we do it in August?"

His response: "If I were you, I'd do it now."

Kicker #1: He was far more concerned about my valve, which turned out to be the driver for surgery, than the aneurysm, which was 4.9cm. In fact, he wouldn't have operated if it was just the aorta. But the valve had finally deteriorated to the point that I was facing heart damage if I didn't do it then.

Kicker #2, as I have mentioned previously - it wasn't a bicuspid valve, but a unicuspid valve – a surprise to the surgeon. (I think poster Unicusp and I are in a very slim group that makes it into your 50s/60s with a unicuspid not having been replaced.) I was 67, and the beauty of the heart is that over all those years, it compensated for the valve, by growing larger (not in an enlarged heart kind of way, but as an "athlete's heart.")

Kicker #3: I also had to have a single bypass of an artery in the back of my heart - not one that would kill me if it had become 100% blocked, but one that would have caused angina or a heart attack. I wondered if that was the pain I was feeling as I was walking up hill. The doctors seem to think the pain was the steep deterioration in my valve. (I also wondered how I could have had any blockage since I eat very well. The answer was that if I didn't eat well.... I'd probably either be dead or have had a heart attack. 😱)

Kicker #4: The day we left Cleveland was the day Cleveland was locking down for covid. Had we waited another 3 months for another assessment – or until August, as I had hoped – the surgery likely would have been delayed and/or the entire ordeal would have been personally more difficult for my family.

Moral of the story – reflected by quite a few stories in this thread – is to be your own advocate. I had the luxury of years to prepare, by educating myself via whatever new study was published and/or videos, etc.... even at times challenging my cardiologist on his suggestions. By surgery time, I was definitely in the mindset to get it done. Very glad I did!
 

Croooser

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OK. Warning. Here is a short story made much longer. But since you asked:

In 2002 my Dad died at 81 of 30+ years of cardiovascular disease. His life was extended by a quintuple bypass and later a couple of stents but the last 10 years or so he was a cardiac cripple. His Dad died in 1964 at age 66 of cardiovascular disease and he was a cardiac cripple for many years too. They both suffered multiple heart attacks and persistent angina. When I developed high cholesterol and high blood pressure by my early 40s, I KNEW it was only a question of time.

In mid 2003 I had an annual physical. In the initial interview I updated the Dr. on my Dad as part of my family history. His response was "Well, fortunately, now that's preventable." In a somewhat skeptical tone, I replied "Well, let's hope so." He gave me a strange look and proceeded with the rest of the exam.

At the conclusion of the exam he reviewed the results with me in his office. At the end he said that there was some tests that were used to identify the state of cardiovascular disease but that they were not covered by insurance. The tests were a CT scan to identify calcium deposits (the thinking was that blockage is usually located with/around the areas of calcium deposit). That test was called calcium scoring. In addition, a blood test that indicates the presence of inflammation in the body was performed. The two tests combined were believed to be highly predictive. I agreed to proceed with the testing. Note that by this time I was already on Lipitor. In his words the results were - "you do have cardiovascular disease, but if this was a football game, you are still in the first quarter -it's moderate". He discussed raising my Lipitor dose with me and I decided to do that. I decided that I would assume the risks of a higher dose of Lipitor in an effort to stem the growth of the blockages. So, that's what I did. My belief was that I would still get the family heart attacks (and everything that goes along with long term cardiovascular disease) as the disease progressed, but that maybe, I could stall it and sustain a better quality of life for longer.

An incidental finding of the test reports was that I had what was labeled a "mild to moderate dilatation of the ascending aorta". It was 4.7 cm. With that finding, the Dr. advised an echo to take a look at the valve. That test came back with an AVA of 1.8 cm... and we were off to the races. Over the years, I had periodic echoes and CT scans. For a long time, neither condition changed much. I once asked my cardiologist about that and he shrugged and said "God has a sense of humor".

Fast forward to October 2020. Valve measured .9cm and aneurysm was at 5.0. By this time, I had SOB on exertion but was till able to walk 3 miles/day at 3mph at age 70. But I also was experiencing increased fatigue. My cardiologist suggested we retest in 6 months. We did and I used that 6 months to understand the current state of surgical procedures, potential risks and complications as well as see what I could learn about hospitals and surgeons. The test results were consistent. He said that it was time for a surgical consult. I sent my records to the CC and my surgeon of choice, Dr. Johnston, said that he felt that I was a candidate for surgery and he agreed to perform it.

Postscript. Over the years I continued looking over my shoulder for the heart attack that I KNEW was coming my way. At the CC this year for my valve and aneurysm surgery, my preop cardiac cath showed only one artery with blockage and it was only minimal!
 
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