60 y/o Female St Jude Mitral valve

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Bubba T

Member
Joined
Oct 14, 2024
Messages
6
Location
New England USA
Hi everyone, I'm joining on behalf of my wife, 60y/o who woke up after mitral valve repair to a ticking St Jude mechanical valve. Never had any symptoms, except a loud heart murmur that started just after covid. Apparently the broken cords were collagen related and the valve tissue was too flimsy to be reliably repaired.
We suspect APS (undiagnosed) along with covid assisting in the acceleration of damage may have played a role in the degradation at an early age. (still researching this, so no conclusions yet)

Its almost 8 weeks since the surgery, completely back to normal now. (First 3 weeks were rough with the warfarin insanity)

My wife still has lovenox bruises on her legs from the issues the visiting nurse had with the INR POC testing. I finally purchased my own POC device (same one she was using, coag-sense) to finally start getting accurate readings. The problem she was having is her sample tubes would not fill to the full 10 ul, so she kept putting in short blood samples and getting very low INR readings of 1.2 and 1.3. Once I got my own POC device, we were not surprised to get a 3.3 reading the same day she got a 1.3. She started using my sample tubes when visiting to get full samples. (maybe they were exposed to moisture and the capillary action is failing) My wife was very happy to be finally off the lovenox shots after 3 weeks.

We recently transitioned to the cardiologist coumadin clinic which is running out of a local hospital. I was surprised to find that they use the CoaguChek POC device for INR testing and reporting. I tested along side the pharmacist and got the same reading with my coag-sense (Whew! I was very nervous before that sync-up test). To date we still have not had a blood-draw test since leaving the hospital, so it looks like POC devices have a high confidence level now, specifically the CoaguChek tester.

Something that made life-on-warfarin easier to control was adding a multi-vitamin high in Vitamin K to our daily pill diet and only testing INR before taking that vitamin. The one my wife takes is Centrum Silver for women, it has 50 mcg of vitamin K (unknown how much is K1). If we are trending low in INR, skipping the vitamin that day increases her INR 0.5 on the next days reading. The reverse is probably also true, but we have never tried to lower the INR using a second vitamin (or half a vitamin, or vitamin K1 tablets). What I don't know is how much her INR drops in the afternoon after taking the multi-vitamin, so we avoid testing after taking the vitamin since we know it will be lower. This one addition to the diet daily gives us the ability to easily adjust the INR number in a very predictable manner without changing the warfarin dose.

I did mention possible APS, we don't know what the diagnosis was back in 1993 when we lost the first pregnancy, but we suspect APS was the culprit and we are still trying to get those records to confirm it. We might just get re-tested but if the INR numbers stay stable (which they are right now) it might be better to keep that an unknown since it will block our ability to do self monitoring and it might become a pre-existing condition if the insurance rules change again here in the states. (some things are better to be kept undocumented)

I was going to join earlier, but I didn;t feel as though I had anything to contribute. The only advice I would give people is to get your own testing device and do your INR testing early in the AM before introducing any vitamin K into your system. We like the consistency and flexibility of using the multi-vitamin to allow us to control the INR range better, although the Warfarin clinic contact didn't like that approach.

I want to thank all the members here who have contributed to this forum, it's been an invaluable source of information. Its given us confidence that we can avoid the clots and bleeding events that are going to be a part of her life forever.

Bubba T (husband)
 
Hey Bubba and welcome

I like your approach.

Its almost 8 weeks since the surgery, completely back to normal now. (First 3 weeks were rough with the warfarin insanity)

Once I got my own POC device, we were not surprised to get a 3.3 reading the same day she got a 1.3.

yeah, my money is on the Roche ...

I was surprised to find that they use the CoaguChek POC device for INR testing and reporting.

I'm not, they're really well established now. The local nursing home uses one too ... I've been using mine for 12 years now

You've probably read it (since it seems you've done a bit of lurking reading) but this is everything on my blog INR related:

https://cjeastwd.blogspot.com/search/label/INR


Best Wishes
 
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yeah, my money is on the Roche ...
Agreed, I would have dished out the extra cash had I done more research on which unit to purchase. This was the same brand name they were using, so it seemed like the right choice. (Actually it was a knee-jerk reaction, we found, we bought...)
 
You've probably read it (since it seems you've done a bit of lurking reading) but this is everything on my blog INR related
I just finished reading all your articles, I found them after posting the first post :)

The 'Article from 2014 on managing my INR would have been very helpful when we left the hospital. I'm suprised I didn't hit it on a google search. (I finally followed some of the links)
 
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Hey Bubba and welcome

I like your approach.





yeah, my money is on the Roche ...



I'm not, they're really well established now. The local nursing home uses one too ... I've been using mine for 12 years now

You've probably read it (since it seems you've done a bit of lurking reading) but this is everything on my blog INR related:

https://cjeastwd.blogspot.com/search/label/INR


Best Wishes
We are now in the market for one of these amazing little doohickies. Is there a thread you can direct me to that tells me how to find one at a good price? LOL
 
Good morning

Thanks for the kind words
The 'Article from 2014 on managing my INR would have been very helpful when we left the hospital. I'm suprised I didn't hit it on a google search. (I finally followed some of the links)
Google has some interesting biases now. If it's not making money on the reference you don't appear. Back in 2008 when I started my blog I deliberately didn't monetise because I didn't want to seem "owned".

¯\_(ツ)_/¯

Hope you find something here and I'm glad your wife is doing well.

Best Wishes
 
We are now in the market for one of these amazing little doohickies. Is there a thread you can direct me to that tells me how to find one at a good price? LOL
Not really. I'd keep an eye in eBay as they do turn up there cheap, but new is probably the only thing now.

Do not get the Coaguchek S
1728936709806.png




Only the XS and INRange. The S no longer has any strips available, making it a paperweight.

¯\(°_o)/¯
 
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Is there a thread you can direct me to that tells me how to find one at a good price?
I paid full price for mine $ 600 us online. I was actually surprised they sent it after reading the reviews and the rating on BBB. I wouldn’t recommend them but they did deliver the new Coag-sense machine quickly, it actually arrived before the order was marked as shipped. It took an online chat to push the shipping of the test strips. $240 us for 50 test strips.

I’ll use this as my backup tester after I secure a CoaguChek unit. I’m hoping to secure one covered by my insurance after my 90 days is up. I suspect that will take an act of god to pull that off.

Isn’t “for profit insurance” a contradiction in term? I suspect they will be difficult after dishing out the cash for the valve replacement. Max out of pocket was hit early in this journey.
 
As long as the Vitamin K is consistent, it should be okay. However, why not adjust to her diet without the Vitamin K supplementation?

As she continues to recover and gets more active, expect some changes. Because of Pericarditis starting at 8 weeks out and adding Prednisone for 9 months and then Vioxx for a while, it took a while before mine was completely in sync with my normal diet, but now as long as I'm not drinking more alcohol than my usual drink every week or two, it's stable.
 
Isn’t “for profit insurance” a contradiction in term? I suspect they will be difficult after dishing out the cash for the valve replacement. Max out of pocket was hit early in this journey.
Having worked in the industry for over 25 years, mostly on the provider side, but 9 years total on the payer side, that's not really how it works. Valve replacement patients cost pennies compared to transplant patients! Coverage is determined by benefit plan and medical necessity. Last I checked, which has been a while, most self-insured large employer groups and fully insured plans followed the Medicare benefits, which is machine rental and coverage that goes along with it.
 
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As long as the Vitamin K is consistent, it should be okay. However, why not adjust to her diet without the Vitamin K supplementation?
Multi vitamins are good, she takes it daily religiously, especially now that some foods are limited. (Broccoli, coleslaw, olive oil…) We only used that INR jump twice early after release as we trended down toward 2.0 to keep out of lovenox territory. She was on Lovenox shots for 3 weeks while we worked through the testing issues.

She’s been stable between 2.7 and 3.3 for about 4 weeks now eating mostly the same diet we ate pre-surgery.
 
My wife works for the health care company that owns the insurance company. We hit max out of pocket long before entering the hospital for the surgery.
My point is that they don't usually and shouldn't look at spend to determine benefits. Look at the plan documents to see what's covered. If it's a covered benefit and the doctor says it's medically necessary, they shouldn't deny it. Again, they might approve a rental, but not an outright purchase and you still might have to pay for the strips. I have owned two home testing units over the years, the first before Medicare covered it and my plan also didn't cover it. The second was after, but because I worked at a hospital with very strict benefits and testing was available at the hospital, they wouldn't pay for the machine. I have crappy veins and am tired of the veins in my hands being blown so avoid lab draws as much as possible. I use money from my FSA for the strips.
 
I'm not, they're really well established now. The local nursing home uses one too ... I've been using mine for 12 years now
The Coumadin Clinic associated with my doctor's office was using a Coaguchek in the late 90s. Unfortunately I had to change doctors when I changed jobs and had to go to LabCorp for all bloodwork. I put up with it for a while, but then bought my first machine, the now defunct Alere INRatio, in about 2005.
 
now that some foods are limited. (Broccoli, coleslaw, olive oil
To echo Lisa's comments, these foods should not be limited due to warfarin. I eat all three of those foods on a regular basis- in fact, I had some cole slaw with lunch, some olive oil on my salad and will have broccoli with dinner tonight. Best to dose the diet, not diet the dose.

Is this a diet restriction her doctor has given her?
 
I see now that I've confused INRange with INRatio ... I had no idea this other product existed


Alere is now Abbott, but this particular machine no longer exists. It's defunct.
I was merely wondering what you meant, because I don't assume every person knows the meaning and uses every word correctly.

However reading that TGA link all the way through I find this image

1729048336494.png


never knew it existed, and I'll be sure to check that people are using INRange and INRatio as I thought that was just some error.
 
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