Bubba T
Member
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)
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)
