Plain old AVR

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PAN

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Happy to answer direct questions as needed. PM me if I miss them (that way I get an email notification)
Really appreciate that. I may take you up on the offer when the time comes. I intend to record every dose and test from day one. From reading yours and many other posts I'm pretty comfortable about AC. No worries :)
 

pellicle

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Really appreciate that. I may take you up on the offer when the time comes.
You'll be welcome to.

I intend to record every dose and test from day one.
Probably not needed, just record your daily dose once at the start of the week, stick to it. Record INR at weekly testing time, and make the decision of dose the for the week in advance. Work and think in daily doses. Fir instance mine at the moment is 7mg daily.
Suggestion:
  • Get a pill box, so you can see you took ir didn't take
  • take your dose at a consistent time, to reduce the chance you forgot
  • set alarm on your phone for drug time
  • Choose a time that's typically a convenient time, say breakfast or dinner doesn't matter
 
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Stevebav

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We used to have a "virtual waiting room" here, and I used to welcome new folks to join, hang around in the waiting room, and ask all the questions they wanted. We are here to help, however we are able. I have been less active for a bit, not for heart-related reasons, though.

I can really understand the mind games we go through. I had over 11 years to torture myself. The folks here taught me a lot about the choices we need to make, the surgery, the recovery and even things about how to control my mind so as to not go crazy while I was, myself, in The Waiting Room. It is difficult, but manageable.

One way I kept track of my own deteriorating valve was to keep an exercise diary. I have been an active gym rat for decades.
Yes, these things usually get worse. The good thing is that the greatest majority of valve patients aren't surprised when it is time for surgery. They can usually feel it coming.
Hi PAN,
from one lurker to another thank you for post -responses prompt me to ask if the 'virtual waiting room' content still exist on here - I do find the mind games take over whenever I let them and have found this (and other similar boards) extremely helpful.
Like many I had my BAV revealed (5 years ago at 50yrs) through a casual 'you know you've a murmur' comment when being checked over for something else. Recently was pointed to this site and have been lurking - many thanks to every contributor - and have greatly improved my understanding of AVR in this time, reaching your 'Plain old AVR' mindset.
I'm now in a position where aortic aneurysm seems most likely to 'trigger' intervention (hovering around 50mm) - the BAV seemingly holding up quite well, and have begun a whole new research journey - BP Meds etc..Your post and responses have given me resolve to exercise above commuter walks to train station and back!
 

PAN

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Probably not needed, just record your daily dose once at the start of the week, stick to it. Record INR at weekly testing time, and make the decision of dose the for the week in advance.
Excellent, that sounds like a good plan. better than chasing your tail with small adjustments through the week. I take a BP med for the valve right now and I'm very used to taking them daily. Take them every evening, recorded on one of the many med apps available. However doubling up with a pill box makes too much sense given the importance of AC. All in good time. TOE before the end of the month, who knows could be a long way off :)

Steve. I know what you mean. I try to keep up with as much exercise as possible. Lately that has felt a lot more difficult and I find myself taking a slightly more relaxed approach. Athletes we are not in this current condition so keep it in mind. I'm trying to eat well, keep moving and enjoy the couple of beers I do allow myself. It'll come around eventually :)

Plain old AVR I lifted from another member but you are right, keep reading about it and it will put your mind at ease. It has to happen, by the time it does it'll be for the better. Bring it on I say :)
 

Protimenow

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One point that Pellicle may not have made as clear as he could have -- do your best to take the SAME DOSE every day. In his 7 mg a week example, that's 1 mg daily - I'm now taking 8 mg daily - 56 mg a week, and it fluctuates.

Fortunately, warfarin is available in a LOT of different doses, and it's possible to be able to create a daily dosage that divides your weekly dose into seven even parts (although it may take a few pills each day to do it).

You may not be doing any damage if you don't take the same dose every day, but when you go to test your INR, the value will fluctuate, based on the dose that you took a few days earlier. (For example, before I knew better, I took 5 mg a day, except for Tuesday and Thursday - If I tested on a Sunday, the result would have been different from my Tuesday result. It's hard not to react to an INR that is near the top (or bottom) of a range, but these can be considered artifacts that were based on the staggering of doses.
 

PAN

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One point that Pellicle may not have made as clear as he could have -- do your best to take the SAME DOSE every day. In his 7 mg a week example, that's 1 mg daily - I'm now taking 8 mg daily - 56 mg a week, and it fluctuates.

Fortunately, warfarin is available in a LOT of different doses, and it's possible to be able to create a daily dosage that divides your weekly dose into seven even parts (although it may take a few pills each day to do it).

You may not be doing any damage if you don't take the same dose every day, but when you go to test your INR, the value will fluctuate, based on the dose that you took a few days earlier. (For example, before I knew better, I took 5 mg a day, except for Tuesday and Thursday - If I tested on a Sunday, the result would have been different from my Tuesday result. It's hard not to react to an INR that is near the top (or bottom) of a range, but these can be considered artifacts that were based on the staggering of doses.

Thanks Protime, I was pretty sure what pellicle was getting at but never hurts to reiterate for any newcomers. Though he does say he is on 7mg daily. Not to worry though :)

So the take away is to treat each week as a block in time. Calculate daily dose required and stick to it to give best chance of consistent results. Adjust on a weekly basis for the same reason. Seems straight forward :)

Steve , as for the content that was once contained within the virtual waiting room. I'm not so sure, somebody may be able to help you out :)
 

pellicle

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Hi
So the take away is to treat each week as a block in time. Calculate daily dose required and stick to it to give best chance of consistent results. Adjust on a weekly basis for the same reason. Seems straight forward :)
that's my approach. By keeping data on a spreadsheet which can be made to automatically make a graph you can see immediately if you're trending one way or another and choose to do something or not. I often say that its best to keep a steady hand on the tiller, but I wonder if anyone now days understands what that means.

Try not to over adjust because that just acts like pushing a pendulum around and next thing you know you're all over the joint.
 

Protimenow

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I understand 'steady hand on the tiller.' It's a good expression that indicates how INR management works - a slow change yields somewhat delayed results - just like a change in dosing.

I haven't steered a boat in decades, but the expression is clear to me.
 

PAN

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Hi,

A short update, not much has changed, still in the holding pattern.

Echo last year showed the usual BAV results i have been seeing for the last few years. Pressure gradient had definitely increased (65mmHg peak) so signs things are going down hill slowly or maybe quickly :). TOE performed which confirmed now in the severe range for regurgitation.. however function of LV remains good, EF is acceptable and ascending aorta is holding around 4.1.

I have avoided any prolonged cardio sessions since January, I have proved to my self that it is the source of the light headed feelings I had been living with. If I stop running things greatly improve. I went through 4 periods of rest and then returning to light cardio and my theory seems to hold. However I still have a constant, slight sensation of light head and slight head ache that I cannot escape. Annoying. So to combat the reduced cardio i have tried to alter my eating pattern, stick quite close to a 20/4 eating pattern, sometimes 18/6 but who's watching. It has helped a lot. Fat loss , maintained weight and no real drop in calorie intake either. I started some kettlebell training during the lockdown, even that seems to be getting tougher.

I think the plan is to address this pretty soon but the risk with covid-19 also needs to be taken into account. The valve will decide for me no doubt. Cardio consult in the next few weeks and we go from there.

Hopefully this might help someone experiencing the slow decline associated with aortic regurgitation.

Sun is shining, nearly time for a beer :)

P
 

Protimenow

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I'm not convinced of the danger of going to the hospital for essential heart issues. I was in the hospital four times since late March. Each time, before I was admitted (and sometimes while I was already in a room) they took my temperature, asked about symptoms (to rule out COVID-19 infection) and moved me to a pretty quiet non-COVID-19 floor.

I was told that these floors are unusually empty - people with problems who don't have COVID-19 aren't going to the hospital as much as before, so beds are unused and the patient population is down.

In a time like this, aside from fears of contracting the virus in the hospital (probably fairly unlikely because the floors are well isolated), it may be a better time for procedures than when things are 'normal' and there are many more patients to care for. Further, I don't think COVID-19 patients require surgical interventions - so operating rooms and surgical support may actually be more avalable, and better, than usual.
 

Protimenow

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Wow. You wouldn't have called this thread 'Plain old AVR' 30 years ago. It was the same surgery, but there were far fewer surgeons with the training or experience to do this 'plain old' surgery.

Things have certainly gotten much better for those who need an AVR now.
 

PAN

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In a time like this, aside from fears of contracting the virus in the hospital (probably fairly unlikely because the floors are well isolated)
I would be inclined to agree. In a few more months it'll no doubt be busier and in the absence of a vaccine the risk will probably be higher. An interesting little addition to things.

Wow. You wouldn't have called this thread 'Plain old AVR' 30 years ago
I think I may have read the "Plain old" part in another thread. Just the valve and hopefully nothing extra required. Possibly the simplest repair work they do now. i just try to remember that things can be a lot more complicated and have read about so many stories here. your own included

Imagine where we might be in 10 or 20 years :)
 

Protimenow

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I took 'plain old' to mean fairly routine. I didn't think about it in comparison to other repairs that may be necessary in addition to the valve replacement. However, your statement that an AVR is 'possibly the simplest repair work they do now' underscores my point.

It takes a long time to get FDA approval of new devices - it's probably not inconceivable that new technologies developed today may not see widespread use for another 5 or 10 years (with the exception of, perhaps, some rushed vaccines for COVID-19). But, yes, new valves made from different materials are being tested, perhaps new valves can be 3-D printed at some time in the future, perhaps there will be a procedure to modify a bileaflet valve so that it becomes trileaflet - or other things that only exist in the minds of researchers will become available within the 10 or 20 year timeframe.. I don't think I'll be around long enough to see any of those developments, but perhaps future generations will be able to take full advantage of them, the concept of anticoagulation will become a distant memory -- perhaps even a punchline, and heart issues will become more easily manageable by then.
 

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