Cyborg in training

Help Support ValveReplacement.org:

johnmarkos

Cyborg in training
VR.org Supporter
Joined
Jul 21, 2015
Messages
141
Location
San Francisco, California, U.S.A.
If you can find a good deal on a meter during that three month period, and want to self-test, you might consider grabbing the deal, and a few tests just to learn how to use the meter.
So I'll start shopping on eBay. I guess the wait is only in case I want it covered by my insurance, which would be nice. On the other hand, I'm concerned that if I just follow the instructions from my cardiologist, I won't get tested frequently enough, so I might end up going that way.

So with self-testing outside official channels, the user sees the results? And then, I guess, I would report them to my cardiologist?
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,431
Location
California
The meters show the test ON THE METER. You will absolutely see the results. The CoaguChek XS shows the INR - you have to push a button to see the prothrombin time (if that matters). The Coag-Sense shows both.

I've been recording the prothrombin times for every test I've had (if the lab provided it) for the last decade, but I'm not entirely sure why, because, depending on the reagent used, the time may vary somewhat.

Your cardiologist or PCP will be the one prescribing your warfarin -- I suggest that you create a spreadsheet with time, day of test, (in my case, the meter used for the test), if it's a lab test, indicate this, your dosage and anything that may have impacted the test (splurged on salads, took an antibiotic, etc.). If you show THAT to your doctor, indicating that you've got some control of your INR and dosing, your doctor may have little hesitation before prescribing your warfarin.

Your cardiologist probably won't have much interest in adjusting your dosing - he or she may pass it off to someone in the office who is concerned about those things, or send you to a clinic or service. With the resources here (Pellicle is a great resource), you'll be able to properly self-manage your anticoagulation. You'll only need your doctor for prescriptions and prescribing occasional blood draws (if you're interested in comparing the results to a lab - which may get it wrong).

(My PCP trusts me. He knows that I self-test and self-manage, and freely prescribes my warfarin. He also understands that it may take a few different doses to create my appropriate dose. Currently, I get 7.5 mg tablets, 4 mg tablets, and 1 mg tablets. I could probably do as well with 5 mg tablets as I do with 7.5 - but my INR frequently requires a dose of 7.5 mg, so I only have to take one pill instead of two. My doctor had no issues with prescribing multiple doses. You may have to educate your cardiologist or PCP about the reasons for multiple doses, but this gives you the flexibility to create a more consistent daily dose than being stuck with one dose (if a smaller or higher dose would work better) for you).
 

DachsieMom

Well-known member
Joined
Mar 3, 2015
Messages
314
Location
CT
My insurance made me wait three months.
My Inr was crazy after surgery. Took about 4 weeks to rise above 2.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,069
Location
Queensland, OzTrayLeeYa
So with self-testing outside official channels, the user sees the results?
shown right then and there on the machine. Have you read my page here?
you will also need to be on board with your Doctor who will be writing the scripts for your warfarin, so I recommend you have a chat with them before you buy a machine in case there are "head winds"
 

johnmarkos

Cyborg in training
VR.org Supporter
Joined
Jul 21, 2015
Messages
141
Location
San Francisco, California, U.S.A.
I went in for my cardioversion today, and they ran a 12-lead EKG before they were going to do the procedure. It turns out I was already in sinus rhythm! I must have spontaneously cardioverted on my own sometime since my appointment with my cardiologist on the 23rd. Anyway, of course I'm thrilled, and I'm happy to do what I can to stay in sinus rhythm.

My INR was 2.1 at the hospital, so they would have gone through with the procedure had I been in atrial flutter. My cardiologist says he wants me to stay between 2 and 3 for now.

My cardiologist said it was up to me whether I wanted to have up to a cup a day of coffee, too, so I had a few sips after I came back from the hospital. I'm nervous about having any more, so far.

Regarding home INR testing, my cardiologist is supportive, but he wants me to go through insurance, not eBay. So the nurse in his office is looking into getting me set up with home testing. Meanwhile, I'll get weekly testing as my INR stabilizes.
 

PAN

Active member
Joined
Oct 17, 2019
Messages
28
Location
UK
That's brilliant news John. You must be so relieved.

Think a few sips of coffee must be allowed. Just ease into and see how it goes :)

Good news also on the home testing. Why it is not started at discharge i do not know. keep the official visits to the lab for clinical monitoring and train with the meter over the first couple of months. Makes too much sense. That is what I aim to do.

Hopefully you have a smooth road ahead.. keep us informed :)

P
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,431
Location
California
That's great news. I won't advise you about coffee - you can try increasing your 'dose' and see if it causes you any problems.

I hope your insurance pays for your meter and doesn't lock you into a service that will cost you quite a bit of deductible., If this is the only way your doctor will give you warfarin refills, of course, you'll probably have to go with it - until you convince the doctor that you can handle it on your own.
 

Bryan B

Well-known member
Joined
Jan 16, 2004
Messages
1,885
Location
NC
I had AFlutter in 2010 as the dilation in my aortic root began to accelerate (had Ross Procedure in 04, they first noticed dilation in 07, had Bentall procedure in 2011). I ended up having an ablation and have not had any problems since. I was admitted early in the morning, had some blood drawn and a MRI. I had the ablation that afternoon and was discharged the next morning.

Ironically as a life long golfer with a single digit handicap I played the best round of golf in my life while in AFlutter (4 under 68)...in the middle of the summer in 90+ temps. I remember that period of time well where my resting HR was ~120...sometimes higher. In retrospect I'm not sure if playing golf in the summer heat while in AFlutter was the best idea I've ever had, but that 68 still stands as my lowest score ever. :LOL:

Great to hear that you converted back into sinus rhythm on your own!
 
Last edited:

johnmarkos

Cyborg in training
VR.org Supporter
Joined
Jul 21, 2015
Messages
141
Location
San Francisco, California, U.S.A.
The surgeon drained 650ml of liquid from my pleural cavity, using a needle through my ribs in back. It looked like a craft brewery's red ale, a resemblance enhanced by the somewhat antique-looking glass container that held it. I was given a shot of local anesthetic beforehand, so the experience wasn't painful. I'm told it's possible but unlikely that I'll need to come back for another draining, knock on wood.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,069
Location
Queensland, OzTrayLeeYa
The surgeon drained 650ml of liquid from my pleural cavity, using a needle through my ribs in back... I was given a shot of local anesthetic beforehand, so the experience wasn't painful.
that's a relief

I'm told it's possible but unlikely that I'll need to come back for another draining, knock on wood.
*knocks on head*
 

Freebird

Well-known member
Joined
Sep 27, 2019
Messages
63
The surgeon drained 650ml of liquid from my pleural cavity, using a needle through my ribs in back. It looked like a craft brewery's red ale, a resemblance enhanced by the somewhat antique-looking glass container that held it. I was given a shot of local anesthetic beforehand, so the experience wasn't painful. I'm told it's possible but unlikely that I'll need to come back for another draining, knock on wood.
Do you feel any better since the procedure?
 

Freebird

Well-known member
Joined
Sep 27, 2019
Messages
63
Not really, although I wasn't really feeling bad before it. I wasn't having trouble breathing. I'm hoping I'll be able to get a larger volume than yesterday when I use the spirometer today.
No fever anymore?
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,431
Location
California
Hey, John -- speaking for myself, I get irregular heartbeats occasionally (or, according to a holter monitor in 2018, a few times a day - just one or two beats at a time), and I that others on this site also get them. For me, they usually last a few minutes - and are really unrelated to other issues. Beta blockers are supposed to help - I'm taking a really low dose of Bisoprolol - every other day (I don't like the side effects), and this MIGHT help regulate the heart rhythm.

Your cardiologist may be able to handle your arrythmia chemically.
 
2
Top