Cyborg in training

[johnmarkos]

Hey, John -- speaking for myself, I get irregular heartbeats occasionally . . .

Your cardiologist may be able to handle your arrythmia chemically.

Good to know! I'll mention it to my cardiologist during the week. Given the brevity and lack of tachycardia during the episode, I don't think it warrants a weekend call. I'm currently taking 12.5mg of Carvedilol (Coreg) to lower my heart rate, and that's a beta and alpha-1 blocker. Nevertheless, if this keeps happening (it's still early days, and arrhythmias are common soon after surgery), I will definitely work with my cardiologist to treat it. Thanks for the advice and support!

 

[johnmarkos]

I’ve been admitted at CPMC Mission Bernal in San Francisco (formerly St. Luke’s) for AFlutter and tachycardia. Maybe cardioversion tomorrow. INR is currently 2.5.

 

[PAN]

Hey John ,

Sorry to hear you are continuing to have a few problems. You are in the right place. Really hope they can sort your rhythm out soon.

Best of luck!

P

 

[Suckyvalvegurl]

Good luck with the cardioversion. Fingers crossed.

 

[johnmarkos]

Apparently, I cardioverted without a shock overnight because of Amiodarone, and I’m back in sinus rhythm again, knock on wood. They have me on an Amiodarone drip, and I’m wondering if they can take me off it. I’m nervous that I’ll go into AFlutter yet again.

 

[johnmarkos]

They have me on an Amiodarone drip, and I’m wondering if they can take me off it.

I’m told I’m going to be on Amiodarone for a while (a month or two), to prevent a recurrence of the arrhythmia.

 

[johnmarkos]

Still in the hospital for one more night. Finally, some good news! I had a post-surgical echocardiogram here in my hospital room, and apparently, my left ventricle has already returned to a normal size. My ejection fraction is 58.5%, which is normal and significantly higher than it was the day of my surgery.

 

[johnmarkos]

INR was measured at 2.9 today, so they’ve dropped my dosage back down to 5mg/day. One nice thing about being in the hospital is getting these frequent INR tests. I’ll get another test outside the hospital, later this week.

 

[pellicle]

INR was measured at 2.9 today, so they’ve dropped my dosage back down to 5mg/day. One nice thing about being in the hospital is getting these frequent INR tests. I’ll get another test outside the hospital, later this week.

are you self testing yet? If so it would be a good time to do reference testing and see if and by how much INR varies with their test (and I guess now's a good time to ask if they're doing vein draw or finger stick)

 

[johnmarkos]

are you self testing yet? If so it would be a good time to do reference testing and see if and by how much INR varies with their test (and I guess now's a good time to ask if they're doing vein draw or finger stick)

Unfortunately, no. The wheels are turning slowly, and the nurse at my cardiologist’s office is “looking into it.” I don’t know how long it will take. I mentioned the eBay option to my cardiologist, but I don’t think he liked it.

They’re doing vein draws, both here at the hospital and at the lab I go to in town.

 

[pellicle]

They’re doing vein draws, both here at the hospital and at the lab I go to in town.

Short term that's fine, long term its going to cause vascular damage (scarring)

 

[Suckyvalvegurl]

Glad things are going much better!

 

[Catie]

John, they started me on Amiodarone in the hospital and over several weeks the dose was gradually reduced. Was on it about 3 months total. I know it's an onerous drug, but my EP doctor said it's the most effective rhythm drug on the market. Best wishes to you!

 

[johnmarkos]

are you self testing yet?

I’m still at the hospital — going home today, I think, and I met with my cardiologist this morning. He says the nurse at his practice will get in touch with me in two days about self-testing.

 

[Astro]

Hope the AF has finished for good. Disconcerting experience but you are still on track to have an excellent long term outcome.

Thanks for sharing your experience.

 

[johnmarkos]

I'm home now, and I did talk to the nurse at my cardiologist's office about self-testing. He said that the company that arranges it should get in touch with me about it.

 

[pellicle]

I'm home now

good to hear ... I hope you get to stay there now ;-)

Best Wishes

 

[Protimenow]

Hey, John:

It's good to read that you're recovering well.

There's one thing that concerns me.

You mentioned that a company that arranges monitoring will contact you. I've seen some issues about the monitoring companies - Dick0236 complained about them a year or more ago - before he took anticoagulation management into his own hands.

(I'm not speaking about all companies - yours may be different). It seems that there are only a few companies doing this (and I won't name them here). Typically, they'll send you a meter, and possibly someone who can instruct you on how to run a self-test. They'll send you strips. They may also send incision devices.

You'll self-test weekly - or at whatever interval your doctor prescribes. A new meter can send your results, over your phone, to the 'service.' If you don't report your INR on schedule, you'll probably be nagged to test. When the 'service' gets your results, they inform your doctor.

For the privilege of providing you with a meter and supplies, and making a phone call that you can easily make by yourself, they charge your insurance a LOT of money, and your deductible may also be very high. If you're on Medicare, Medicare will be charged a LOT of money, and you may still have a high co-pay.

You can buy your own meter - either with a prescription by your doctor, you can buy it from a medical distributor - or you can buy your own. I think that a lot of people on this forum (including myself) get them on eBay. These are devices that are designed to run and run and run without problems; the strips have quality controls built in. I've never bought a defective meter on eBay (although I DID get a POS InRatio meter, but the meter worked as it was supposed to -- ALL InRatio meters were recalled -- but eBay wasn't to blame for this crummy meter).

If you DO choose to self-test with your own meter, wait a couple months until your anticoagulation dose becomes pretty stable. If you decide to self-manage, there are lots of resources here (especially Pellicle) who can help you to do this.

I've been self-managing since 2009, and I'm sure others have been doing it for even longer than I have.

So -- check out what this 'service' will be charging your insurance, what your co-pay will be, perhaps how much the Government has to pay for having you supplied with meter and strips and faxing your doctor for you -- and see if it still makes sense.

 

[johnmarkos]

You mentioned that a company that arranges monitoring will contact you. I've seen some issues about the monitoring companies . . .

I'll try it out and see how it goes, and if it's not working well, I'll complain to my cardiologist and ask for a different way to do it. He seemed skeptical of the eBay route, so maybe I could ask him to prescribe me a meter as you suggested.

If you DO choose to self-test with your own meter, wait a couple months until your anticoagulation dose becomes pretty stable. If you decide to self-manage, there are lots of resources here (especially Pellicle) who can help you to do this.

That sounds ideal to me, but I have to work with my cardiologist to set up a system we can agree on.

So -- check out what this 'service' will be charging your insurance, what your co-pay will be, perhaps how much the Government has to pay for having you supplied with meter and strips and faxing your doctor for you -- and see if it still makes sense.

I have private insurance through my employer, but nevertheless, I do want to pay attention to the total costs, along with my co-pays, and keep them reasonable.

 

[johnmarkos]

Short term that's fine, long term its going to cause vascular damage (scarring)

How long is long term?

I found an "anti-coagulation clinic" that I might be able to go to until I get set up with self-testing. The problem is that my primary care doctor is with medical group A and the anti-coagulation clinic is part of medical group B (not their real names). It seems as though all the specialists I see (including my cardiologist) are with medical group B, because they have some kind of deal. Nevertheless, I get sent to an independent lab that medical group A works with for my PT/INR tests, despite there being lots of medical group B labs in the city, not to mention an anti-coagulation clinic. The independent lab does vein draws; the anti-coagulation clinic does finger sticks.

I'm considering changing to a primary care provider who's with medical group B, but I don't want to have to change cardiologists, so I have to navigate that. It's just part of the bureaucracy of my recovery!