Home testing

[Emmapenny]

My son has been on warfarin for about 8 weeks now.

He is going away on Wednesday for 2 nights on a school geography trip.

I asked the team last week if we could test the day before he leaves so I could send him with the right dose and then test again when he’s back - assuming he’s in range obviously.

The nurse reacted quite dramatically about it all and made me doubt whether he should be going. Telling me what will happen if he’s going out or range and why can’t he test himself while he’s away etc etc. It was a really frustrating call and I felt really unsettled about it all.

I said if he was out of range then I wouldn’t let him go anyway but why are we panicking about something that hopefully won’t happen.

So he had to test again today and I spoke to a different nurse. I broached the subject of my call on Friday as I wanted some understanding of why the lady on Friday was so negative about it all. She was slightly less dramatic but was clearly privy to the conversation I’d had on Friday and tried to explain why she’d said what she said.

Cut to the chase and the reason I’m posting tonight they’ve said he must take his machine with him ‘ incase he has a bleed event so he can test himself’

Is this normal? He doesn’t take his machine with him everywhere he goes so I can’t help but wonder why he needs to take it with him. They don’t want him to test until Friday when he’s back and his INR was 2.5 today.

If he had a bleed event while he’s away he’d be off to the local hospital not faffing around at the youth hostel doing a test.

He’s 15 and I just don’t feel it’s necessary taking the machine with him.If he was going abroad or away for more than 2 nights then I could understand.

Sorry for the long winded post - guess I’m just wondering if everyone takes their home testing machines with them everywhere

 

[Chuck C]

It seems that testing before he leaves on the two day trip and the day he returns would be just fine. I recently went away for 7 nights and was on the fence about taking mine, but ultimately just tested before I left and when I returned.

If it were me, the real concern would be if he forgets to take his medication, which should be easy to mitigate. I'd send him off with a pill box, which has the specific dose for each day in it. I might follow up with a text or phone call to confirm that he took it.

Other than that I would let him enjoy his trip like any other kid and not make a big fuss about his situation. Going away for two days is no big deal and no reason why he should not be able to participate like his classmates.

 

[Emmapenny]

It seems that testing before he leaves on the two day trip and the day he returns would be just fine. I recently went away for 7 nights and was on the fence about taking mine, but ultimately just tested before I left and when I returned.

If it were me, the real concern would be if he forgets to take his medication, which should be easy to mitigate. I'd send him off with a pill box, which has the specific dose for each day in it. I might follow up with a text or phone call to confirm that he took it.

Other than that I would let him enjoy his trip like any other kid and not make a big fuss about his situation. Going away for two days is no big deal and no reason why he should not be able to participate like his classmates.

Thanks Chuck

I’ve bought him some travel pill pots and put the right dose in for the day and he’s got an extra day incase he drops one or something unforeseen! Also will get him to text me when he takes it and the teachers are going to check as well.

I felt really comfortable with it all until I spoke to his team.

Like you said I’d really like him to just go and have fun with his mates and not thinking about looking after the machine or if he’s bleeding trying to test himself!

 

[Chuck C]

I think you are going this well prepared, with safeguards in place to make sure he takes his warfarin.

Like you said I’d really like him to just go and have fun with his mates and not thinking about looking after the machine or if he’s bleeding trying to test himself!

He should be able to go without worrying about testing himself. It is just 2 days. In the very unlikely event that he has a bleed, they will get him medical care and I fully expect the place of care would test his INR in such event.

 

[pellicle]

Hi

why would you test him if he's bleeding? I can't see that scenario unless you're talking about something *very* unusual like blood in the urine.

I felt really comfortable with it all until I spoke to his team.

I feel this is an unfortunate side effect of how most clinics act. Lets assume that they are either well meaning or simply neutral. I would say that noone in the clinic is actually on warfarin, and so they have no personal knowledge, typically they don't have any knowledge of you or your son. Additionally they are more often actually concerned about "blow back" on themselves. This essentially makes them all into organisational idiots. (*be aware that I have the view of idiot stemming from the same word as idiomatic comes from; meaning something about the self. They are concerned fundamentally about themselves and have not placed themselves in your position when advising)

From this position they are mainly concerned with patient compliance. They have few methods of managing that aside from the usual blunt instrument of generating fear. They are trained into thinking that instilling fear will ensure actions. As you can see its a bad strategy.

For two nights I would NOT take my Coaguchek on a road trip. Even if my INR was not in range or I was concerned that it was heading out of range. I'd test no sooner than 3 days after the previous test (IE if I tested on Saturday, I'd test again on Tue or Wed to see what happened).

So I think your strategy of giving him his doses is a good one. I'd keep it in the pill box and send that, I believe strongly that a day labelled pill box is an import tool because it provides feedback that you didn't take a day when you go to take and find "oh, yesterdays is still there".

Send me a PM if you like and we can discuss this a bit more.

 

[Protimenow]

You wrote that he's 8 weeks post-op. It's supposed top take up to 90 days post op to truly get a good handle on dosing.

It also takes more than two days to form a clot - if the INR is TOO LOW. If his INR is fine when he goes on his trip, I can't see much chance that it will change drastically enough over that time to cause an issue.

If he's careful about activities that MIGHT cause bruising, or deep cuts, he should be okay. And if he doesn't want to do nude rock climbing, this will give him a good excuse.

I see no need to pack a meter - especially if he's in range before he goes.

(Of course, I'm not a doctor, so these are just my views. Plus, by the time you read this, he's probably done with his trip anyway).

 

[Superman]

It’s two days. My senior trip was to Washington DC for four days about three months after my first valve replacement. I went to Canada for three weeks about seven months out. Home testing didn’t exist and my parents weren’t with me either time. I tested before I left, brought my meds with, then tested when I got back. I don’t even recall giving it much thought.

If he’s in range for a couple tests in a row before he leaves, I can’t fathom what would cause a massive change in two days that couldn’t be adjusted for back home. Even if he isn’t in range, adjust the dose per guidance, enjoy the trip, come back and see if the adjustment worked.

My wife and I did a rim-to-rim Grand Canyon hike in August. Gone for a week. I tested before we left. Left the machine at home. Tested when we got back. And I enjoyed some tasty local brews and Navajo Tacos are really good! I even ate a wedge salad (salad!?!) when we completed the 14 plus mile hike out because I didn’t have the appetite for much else. That was a brutal hike! The next night I had a side of brussel sprouts with dinner. I live dangerously.

 

[Superman]

If he had a bleed event while he’s away he’d be off to the local hospital not faffing around at the youth hostel doing a test.

You’ve got it. The only thing I’d suggest is maybe a medic alert bracelet or necklace that would alert any first responder that he’s an AVR (aortic valve replacement) patient and on warfarin. Just in case he’s not in a position to self advocate somewhere.

 

[Chuck C]

I enjoyed some tasty local brews

I even ate a wedge salad (salad!?!)

The next night I had a side of brussel sprouts with dinner

Nothing short of a miracle that your still alive

 

[pellicle]

The only thing I’d suggest is maybe a medic alert bracelet or necklace that would alert any first responder that he’s an AVR (aortic valve replacement) patient and on warfarin

If they miss the scar and ticking, keep away from their "assistance"

 

[ATHENS1964]

I always have a pill case with a few doses with my keys,
I might lose my luggage, I might be out of the house for a trip or work and it might be time to take my pill. Also, I always have 1-2 doses of antibiotic with me on the trip in case of injury to avoid endocarditis.

 

[Emmapenny]

Thank you everyone for responding and your words of wisdom.

It’s nice to have people to check in with to check what I’m thinking.

 

[carolinemc]

It seems that testing before he leaves on the two day trip and the day he returns would be just fine. I recently went away for 7 nights and was on the fence about taking mine, but ultimately just tested before I left and when I returned.

If it were me, the real concern would be if he forgets to take his medication, which should be easy to mitigate. I'd send him off with a pill box, which has the specific dose for each day in it. I might follow up with a text or phone call to confirm that he took it.

Other than that I would let him enjoy his trip like any other kid and not make a big fuss about his situation. Going away for two days is no big deal and no reason why he should not be able to participate like his classmates.

I have to use one that has 7 days and slots for morning and evening, for I take several pills in the morning and several at night, for heart and diabetes. It works great.

 

[TGM]

My son is 20 and has been in Warfarin for 15 years. I tend to agree with you that in the event of a bleed, he’d be at a hospital being tested and treated. On the other hand, if he’s a little out of range, the machine and supplies can be sent with him in the event he needs to test while away (assuming he is independent with it). Whatever you decide, be sure to send more Warfarin with him than just the dose. You never know what can happen. I never wanted to limit my sons ability to participate in “normal” school activities and applaud you for allowing him the opportunity to go. I hope he has a great trip