Cyborg in training

[Protimenow]

It's clear that what I was prescribed was too strong. I discontinued Benazepril on the advice of a nurse practitioner - I'm not 'monkeying' around with it by myself.

I also called my cardiologist, indicating that I may be having a problem with the Benazepril and may want to change dosage. The first time they'll be available to speak to me is a call from the Nurse Practitioner on Friday (I called on a Tuesday).

Also - this cardiologist has, in the past, prescribed about twice the effective dose for most of my meds. I know - in one case he prescribed a medication to be taken four times a day -- when I questioned it (after having a lot of side effects), it was dropped to one a day. I have a long history with him overprescribing for me - perhaps my body just uses the medications more efficiently than others. In short - the dose he wants me to take is twice what I had been taking, and is probably too much.

I'm 'monkeying' around, based on advice of a Nurse Practitioner and past experience with this doctor.

 

[Suckyvalvegurl]

I wasn't using "monkeying around" in a negative sense. I meant that it often takes a lot of adjusting and trying different meds/doages to find what works for any given individual.

 

[Protimenow]

I don't know that I took it as a negative - yes, required dosing varies from individual to individual - it's often done by body weight - and going against the original prescription or choice of medications does require tuning. The 'monkeying around' by my doctors put me in the hospital two weeks ago, after one doctor prescribed a calcium channel blocker and, perhaps unknown to my cardiologist, another doctor prescribed an additional calcium channel blocker, add to this the beta blocker that I was already taking, and I had the formula for a dangerously low pulse and blood pressure. Often, the monkeys, have to synchronize the medications so they work for, instead of against, the patient.

Plus, when it takes nearly a week to get a nurse practioner to call when I want to make a change (as my cardio office wanted to do), making ANY changes, even if they are the right ones, can be difficult or discouraging.

 

[Suckyvalvegurl]

The lack of communication between the care providers is frustrating and dangerous for sure. You would think in these days of email etc. that they could consult each other more.

 

[johnmarkos]

I got my self-testing kit yesterday, and today I connected with a trainer from the service prescribed by my doctor. The machine is a CoaguChek XS, and I got a dozen strips and 16 TestWell Choice safety lancets, too. I was able to self-test correctly the first time, and my INR tested in range. My INR readings have fluctuated within a window of only 0.2 since the beginning of March, BTW.

 

[epstns]

I know that adjusting the medication combo post-op is a pain. If you are aware of what each med does and if you have your cardio's blessing, you can usually figure out the proper mix before they can, simply because you will try something and if it doesn't work as desired, you don't have to wait a week or more to get back to the doc to change it.

Using that logic, for about the first 6 to 8 months post-op, my cardio and I adjusted my beta-blocker dosage from 100 mg/day of metoprolol, to 50 and then to 25 mg/day. With the heavier dosage, I always felt like I was going through the day dragging a sled full of rocks behind me. With the 25 mg dose, my heart rate is still moderated (can't get above 145 BPM, period), but I feel more like myself.

Stay with it, John. It sounds like you're making good progress.

 

[johnmarkos]

I got the go-ahead from a nurse in my cardiologist's office, so I've started running a mile or two in my morning outings. My running ability, as measured by heart rate/pace, does not seem to be any worse or better than before surgery.

Last time I checked my INR, I managed to waste two test strips before getting a result on the CoaguChek XS: totally user error. I need to review the instructions closely before I test again. I think the problem was that I wasn't holding the blood drop to the side of the strip until hearing a beep. To paraphrase a saying from tech, PEBCAC: problem exists between CoaguChek and chair.

 

[Protimenow]

I've only started reusing the CoaguChek XS. I've wasted some strips, too (I'm glad that I bought some that expire at the end of May, but that only cost around a buck apiece). Personally, I've found it easier for me to put the drop of blood on top, near the indentation.

The strip failure has been one of not enough blood.

To get a good drop, you can try Pellicle's method - wrap floss under the knuckle and the blood will collect in the fingertip, making it easier to get a good drop. On occasion, I've used a capillary tube to draw the blood in, and then transferred it onto the strip. So far, the easiest way for me to get the blood onto the XS strip was aiming for the center of the strip.

 

[johnmarkos]

The strip failure has been one of not enough blood.

I managed to do the test successfully on the first try today. I don't seem to have any trouble getting a good sized drop. In fact, the drop keeps getting bigger for a few minutes after the test is complete. I get enough blood from a single finger stick to do three or four tests if I wanted to.

 

[Protimenow]

An important point to remember is that the test requires that a drop of blood be deposited onto the strip within fifteen seconds of making the incision. Although you may be able to get many drops of blood of appropriate size for testing, it's only that first drop, quickly applied to the strip, that gives an accurate test. This applies to both meters.

After 15 seconds, the blood has already begun to clot - even if it can be freely squeezed (or drips() from the finger.

 

[johnmarkos]

After 15 seconds, the blood has already begun to clot - even if it can be freely squeezed (or drips) from the finger.

I'll keep that in mind when I do tests in the future. I wasn't timing it, but I'm pretty sure I did it within 15 seconds.

 

[pellicle]

I get enough blood from a single finger stick to do three or four tests if

I should redo this video but ...

 

[pellicle]

My running ability, as measured by heart rate/pace, does not seem to be any worse or better than before surgery.

given all the parameters I'd call that a win

best wishes

 

[Warrick]

All us self testing sea dogs started out wasting strips with error 5 and the like, I seemed to find the prick that doesnt give u a big enough drop is the one thats still bleeding 10 minutes later... think Iv had one error 5 this year.
Just remember 15 seconds is more than enough time to get a drop on and 3 minutes is enough time to boil an egg and stab all your fingers... never boiled an egg while testing but have stabbed every finger whilst panicking..
Self testing is simply the best thing, I spent last week 6 hours drive away from home and an hour from civillisation and still tested my INR on friday.

 

[pellicle]

seemed to find the prick that doesnt give u a big enough drop is the one thats stills bleeding 10 minutes later...

Ken Oath

 

[Protimenow]

When I was in the hospital, and it seemed, when I had dozens of calls from pharmacists, nurses, and others, all were amazed that I self-test and self-manage my INR. They're so used to sending patients off to clinics that I was apparently the FIRST person that they encountered who took the coagulation issue into his own hands.

I'm amazed at how rare it must be to find a self-tester and self-manager. And, meanwhile, the clinics and services are getting rich on the others on warfarin.

It doesn't seem to matter that the time in range is best if the INR is tested once each week, but they're working using old algorithms or only care that they get results that they can pass on to a patient's cardiologist to mismanage.

 

[johnmarkos]

Three more strips in the trash for one successful test today, and I watched the video, which I should have done before I started. Excellent -- thanks! I've got my rubber band ready for next time.

I should redo this video but ...

 

[johnmarkos]

All us self testing sea dogs started out wasting strips with error 5 and the like, I seemed to find the prick that doesnt give u a big enough drop is the one thats still bleeding 10 minutes later...

This is me, now.

Just remember 15 seconds is more than enough time to get a drop on and 3 minutes is enough time to boil an egg and stab all your fingers... never boiled an egg while testing but have stabbed every finger whilst panicking..

I stabbed every finger on my left hand today (not the thumb), and finally got a good drop from the index finger of my right hand.

 

[Protimenow]

I've wasted some XS strips, too. Some were just because it was a bit challenging to get the side of my finger onto the strip; some were that I couldn't drop a good drop of blood onto the strip.

I found one thing that helped reduce the number of wasted strips -- I have extra capillary tubes that were made for the Coag-Sense, but work for the XS, too (and you can buy capillary tubes on eBay) - the blood is drawn into the tube, and then deposited onto the XS strip. The tube probably collects more blood than the strip requires, so the risk of having too little blood practically goes away. The transfer tubes come with the strips, and I was able to get some extras when I bought some strips from a liquidator (I have no idea how the liquidator got them), but, as I mentioned, there are other tubes that should work well for the XS - and may save money in the long run if it keeps you from wasting strips.

 

[johnmarkos]

Pellicle's rubber band finger tourniquet works! I'm regularly getting a good sample after one try now.

In other news, I've been running 5K 4-5 times a week at a pace similar to what I was doing before surgery.

I never finished cardiac rehab -- they cancelled it in March due to COVID-19, and by the time they started up again this month, I was running 5Ks. My cardiologist said it was up to me whether I should go back, so I decided to eschew working out in an indoor gym with other people around.