I've crossed the line into severe and need to make a decision

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newarrior

Have moderate AS live in Asia
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Brother--how are you adjusting to the new valve psychologically and physically ? Does it feel weird, better or worse than the new valve ? How is the clicking ? Continued best wishes
 

Chuck C

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Brother--how are you adjusting to the new valve psychologically and physically ?
I'm responding well in both respects.
Does it feel weird, better or worse than the new valve ?
There is not really a physical sense of better or worse, because you can't really feel your valve, and I came into surgery without symtoms. There is no pain or anything associated with it and my incision does not cause me pain at this point at all. On a psychological level, it feels much better knowing that the diseased, deteriorating valve is no longer there, replaced by a valve which should last foreverver.
How is the clicking ?
The first few days I could not hear the clicking at all. A nurse told me that this might be due to the inflammation around the valve following surgery, acting somewhat like a sound absorber. By about day 7 I started hearing it, but only when it is totally quiet and I am alone. It does not bother me. I can turn on my HEPA filter in my room, to create white noise when I go to bed and then I don't hear it.
 
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newarrior

Have moderate AS live in Asia
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I'm responding well in both respects.

There is not really a physical sense of better or worse, because you can't really feel your valve, and I came into surgery without symtoms. There is no pain or anything associated with it and my incision does not cause me pain at this point at all. On a psychological level, it feels much better knowing that the diseased, deteriorating valve is no longer there, replaced by a valve which should last foreverver. Ok I feel like I am having symptoms and I am glad to hear you are not freaking out or feeling weird about having a new body part

The first few days I could not hear the clicking at all. A nurse told me that this might be due to the inflation around the valve following surgery, acting somewhat like a sound absorber. By about day 7 I started hearing it, but only when it is totally quiet and I am alone. It does not bother me. I can turn on my HEPA filter in my room, to create white noise when I go to bed and then I don't hear it. I have tinnitus and hearing oss since 1996 so I am trained to keep pink and white noise going to mask it..Trying to mask tinnitus and the ticking seems scary and overwhelming--or maybe not...I am almost always alone at home and have little to no structure in my life so I am afraid it might be more noticeable for me
 

Chuck C

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INR 5.0

Day 14 of recovery

Very happy to report that my INR was 5.0 this morning. Yes, that is out of range to the high side, but keep in mind that we were at 1.6 on Saturday morning and worried that Vitamin K might keep testing the lows. 5.0 means that Vitamin K is likely out of the picture and we are just now dosing warfarin, and the amplifications that amiodarone is giving to the warfarin.

Holding today's warfarin dose and expect that within a couple of days I will be within range and with my home monitor I plan to keep in range.

Everyday I feel a little better. At this point I feel very normal. The exception is that I can't walk upstairs quickly, because the beta-blockers and amiodarone, keep my blood pressure and heart rate from rising appropriately to meet the demand. Looking forward to being off all the meds so that I can start some hill work, upon the doc's green light.
 

pellicle

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Still not a fan of holding doses. Halfing. Or taking 1 mg off - sure. But holding always seems to start a yo-yo that’s hard to settle down.
I have made this point too ... but
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in these circumstances its complex but I'd still put in a mg or so at the least, for we still have the P450 antagonist to deal with in metabolising out the warfarin (he only halved that dose from 800mg to 400mg).
 

Chuck C

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I just updated the sheet (assumes you took 4 yesterday) and my estimation is (with limited and unstable data) that you are about right to be in range ... it will be interesing to see how far out my estimation is
It will be interesting.
I am getting INR tested again at Quest tomorrow, looking like a junkie with all these tracks in my arms at this point. Even if it is still a little about target range, I am inclined to at least take one mg. I had remarkable stability in the hospital before the amiodarone and hopefully those stable days will soon return.
 

Unicusp

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It will be interesting.
I am getting INR tested again at Quest tomorrow, looking like a junkie with all these tracks in my arms at this point. Even if it is still a little about target range, I am inclined to at least take one mg. I had remarkable stability in the hospital before the amiodarone and hopefully those stable days will soon return.
Remember the lag effect. I suggest 2mg.
 

Superman

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It will be interesting.
I am getting INR tested again at Quest tomorrow, looking like a junkie with all these tracks in my arms at this point. Even if it is still a little about target range, I am inclined to at least take one mg. I had remarkable stability in the hospital before the amiodarone and hopefully those stable days will soon return.
I’ve got permanent scarring from 20 years of needle pokes before going to home testing. You’ve got a long way to go!
 

pellicle

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Even if it is still a little about target range, I am inclined to at least take one mg.
I'd advocate that

I had remarkable stability in the hospital before the amiodarone and hopefully those stable days will soon return.
in my mind the amiodarone is the core of the problem, once you can substitue that or drop that you'll be find

this: Amiodarone and Warfarin Interaction

The observational trial included a cohort of patients who were receiving a stable dosage of warfarin when amiodarone was added to the treatment regimen. A total of 43 patients who took the combination of warfarin and amiodarone for at least one year were included in the study. Patients were excluded from participation if they were taking other medications that could affect the INR or interact with either of these medications. During the study, the dosage of warfarin was adjusted to maintain an INR of 2 to 3 in most patients. Amiodarone therapy was initiated in the hospital and titrated down to the standard dosage of 200 or 400 mg per day, based on the underlying cardiac pathology. The INR was measured every week initially, then monthly when the stable dosage was established.
suggests we can work with the two together, we'll just need a few weeks and I'd say if we work on twice weekly measurements we can dial it in in short order
 

Chuck C

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Remember the lag effect. I suggest 2mg.
I will probably do 2mg if I am in range. With the effects of amiodarone and its interference with Cytochrome P450, 2mg warfarin = approximately 3.3mg, which was about the dose which kept me in target range in the hospital. They found alternating between 3mg and 4mg was the right balance to keep me 2.9-3.1. If I am above range from tomorrows INR reading, I expect that I will take 1mg, unless it somehow is above 5.0, which I think unlikely. Anything above range, but below 5.00 and I will probably take 1mg The Coumadin Clinic may disagree, as they were talking about me holding for 2 days, but I can override them. The last thing that I want to do is swing under 2.0 again and I would rather a gradual decline than to risk cutting too much.
 

Chuck C

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suggests we can work with the two together, we'll just need a few weeks and I'd say if we work on twice weekly measurements we can dial it in in short order
Agreed. And, actually, I'm only scheduled to be on amiodarone for another 6 weeks. 2 more weeks at 400mg/day, then 30 days at 200mg/day.
 

Chuck C

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Still not a fan of holding doses. Halfing. Or taking 1 mg off - sure. But holding always seems to start a yo-yo that’s hard to settle down.
I think it will be somewhat of a yo-yo ride regardless as long as I am on amiodarone, which interferes with warfarin clearance. 6 more weeks on amiodarone, although I will ask in Thursday's follow up appointment if we can discontinue use sooner than that. I believe frequent home testing will allow us to keep the yo-yo swings reasonable. I'm mostly concerned with staying above 2.0 and believe that I can probably manage to stay under 4.5. Of course 2.5-3.5 is ideal, but I'd be happy with 2.0 to 4.5 for the next 6 weeks and I have a feeling that this will be achievable. Although this range is a little wider than target, the bathtub shaped events graph, which Pellicle has posted many times, suggests that this is still in the low risk category. There is a decent amount of margin beyond the target range before one gets into the high risk area. When I was above 9.5 and below 1.7 I was in an uncomfortably high risk zone, but those levels will be a thing of the past with good management, I expect.
Eventually, the amiodarone will be out of my system and I expect to be in range the vast majority of the time with home testing.
I always try to look at the positive that comes out of trials. In this case:
1. Home testing is far safer than depending on others. Depending on other to draw my blood put me in the danger zone when I encountered an incompetent home visit nurse who did not know he was supposed to fill the vial to the blue line or Quest would reject it.
2. Although I will be diligent all my life to stay in range, I learned that there is no need to panic if one gets a little out of range, say 4.5. Going to 9.7 is not a death sentence, especially when the stay at that level is brief.
3. Vitamin K works amazingly well to get INR down within 20 hours. In the future, should I ever need to use vitamin K, I will use far less than this last time. It worked a little too well. And, I will always keep 2.5 mg of vitamin k on hand.
 

kevanndo

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Going to 9.7 is not a death sentence, especially when the stay at that level is brief.
Indeed, though I test my daughter at home weekly, I call in her results to her clinic. One of the nurses who ran the clinic several years ago told me that a large numbers of patients fail to test regularly, and they'd even had one patient had an INR of 18 and suffered no ill effects from it.
 

Unicusp

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Agreed. And, actually, I'm only scheduled to be on amiodarone for another 6 weeks. 2 more weeks at 400mg/day, then 30 days at 200mg/day.
Wow, still a long time to be on Amiodarone. Thought it might be 30 days total. It shall remain challenging for awhile then.
Have you discussed/challenged the Doctor about coming off sooner with risks/benefits?
Hang in there!
 

Chuck C

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Wow, still a long time to be on Amiodarone. Thought it might be 30 days total. It shall remain challenging for awhile then.
Have you discussed/challenged the Doctor about coming off sooner with risks/benefits?
Hang in there!
My follow up this Thursday, with my cardiologist and then my surgeon. I plan to ask if I can come off of it sooner.
 

Chuck C

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INR 3.6. Very pleased!

Taking 2mg of warfarin today and tomorrow and testing again Thursday.

Got my first Covid jab today. I was a little on the fence whether to get it while I am still in recovery from surgery. But, if I don't get it now it could be awhile, because they are about to open it up to everyone 16yrs+ in about a week in CA (note that is CA as in California, not Central Australia) and they will likely be inundated inundated for weeks. So, got the clearance from my cardiologist that it is not a problem having it this close to surgery and went for it.
 

newarrior

Have moderate AS live in Asia
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"Then there is the fact that something like 50% of the population on warfarin are failing in their taking it" As in simply not taking their meds everyday ? I understand even in developed countries compliance in regards to meds, exercise, diet, screenings, etc etc is poor
 
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