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ICD monitoring


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  • ICD monitoring

    I posted some time back about the bills we were receiving from Cleveland Clinic for downloading data from my husband’s ICD. I have some other questions now, and am hoping for some more specific information and other people’s experiences before my husband heads to Cleveland for his yearly check up - which is now about 2 months later than it should be.

    He has the remote monitoring set up. It uploads info every week at some point in the middle of the night, then every 3 months the info is then downloaded and sent to Cleveland for review. Shortly thereafter, we receive a nice bill for their trouble. : ) We assume everything is OK because we’ve never heard otherwise. I guess they’d only notify us is there is a problem? Will they talk about what the ICD is reporting during his appointment?

    The next big download is scheduled for the one year anniversary of my husband’s last visit to Cleveland for his follow-up appointment. So the data will be sent, then not quite 2 months later, he’ll be in Cleveland. Do they download the data again there? If so, can we skip this upcoming download and wait till his appointment? It’s about $400 every time they do a download, and while we’re not paying for all of it out of pocket, I’d rather not pay for an extra download if we don’t need it.

    Finally, what determines how many times the ICD info is downloaded? We’d like to ask for fewer next year...4 plus whatever they do at the annual visit seems like a bit much, and once again our insurance deductible is going up next year so more will be coming out of our pocket than has in the past. I know this is something that my husband will have to discuss with his doctor, but again, we’d just like to get an idea of what the pros and cons of doing fewer downloads would be, and what seems to be typical of HCM patients.

    I did try to talk with someone at the device clinic earlier today, but she was less than helpful...my first bad experience with someone at the Clinic. I’m hesitant to call again.

  • #2
    Re: ICD monitoring

    Assuming you will be charged and owe a co-pay for your visit to Cleveland Clinic, and I'm sure you will, you should NOT be charged for a remote transmission that close to his visit. Since the interrogation will be included in his visit, your co-pay will be the same for you whether there's an interrogation or not. You are paying an extra co-pay unnecessarily. And the norm is that most people pay for no more than 3 remote downloads per year -- the fourth is their in-person visit. Some people pay for fewer remote downloads than that (the remote monitor sends a special report if there's something alarming, regardless of the download dates, so those downloads dates can vary). And -- some people are not even charged a co-pay for remote downloads. Maybe that's going to change, but right now, there are people who are not charged co-pays for remote monitoring.

    And honestly, I think you're being over-charged and under-informed at the same time, which seems especially aggravating. You are owed, and have every right to receive, a full copy of each every interrogation, whether it's remotely downloaded or in person. Heavens, you're paying (and so is your insurance) quite a hefty sum for it. Some people don't care about reading the full interrogation request, but they can request a phone call instead. The fact that you're not receiving a report, a phone call, or even a form letter that says "your results were all normal" is out of line.

    The Cleveland Clinic's too big -- they won't change until you are clear that you want specific information about how many interrogations total you should be charged for, and that you want a report (from the CC) about those downloads. I believe you need to speak up -- both to your doctor and to the device clinic.

    Good luck!


    • #3
      Re: ICD monitoring

      I took a look and my remote monitoring is much cheaper than what you describe from Cleveland. It was $49.50. (This was the health insurance negotiated rate.) I have one visit with my EP annually and then 3 'remote' visits.

      I actually had a full workup (echo, ekg, stress test, etc) at Cleveland last year and noticed they charged about 4 times as much as it had previously cost at my local hospital. They are a great facility but certainly charge premium prices.

      I'd suggest still having the important stuff done there - like a yearly visit with your doc. However, for the remote monitoring it probably makes more sense to just work with your local facility. It will most likely be much cheaper. I like the peace of mind the remote monitoring provides and don't think it's worth it to skip it if you can get it done more affordably.

      I asked the EP at Cleveland if he was OK with doing the implant but then having me visit a doctor locally and he was fine with this.
      Last edited by benjamintr; 07-08-2013, 09:39 PM.


      • #4
        Re: ICD monitoring

        I have 2 insurances - A HMO though my ex and an PPO though my work. My HMO insurance found out about the other insurance and said I to either forfeit or go with them. Frankly, My PPO payments are like yours and Its every 6 months (with a couple of doc visits that cost way more). I've decided to go with the HMO for "maintenance" and only see the PPO EP (on the sly) when there is a specific need or problem. Also, I'm due for a power-pac exchange within a year so it'll be much cheaper for me.
        BTW - The actual device manufactures are not keen on releasing this info to you. (its can be very technical). I always talk with the tech's and they mention if any rhythm issues or watch & wait episodes (usually with a caveat to discuss with the doctor). Your EP should take the time to tell you in detail the status of that report and can also, give details on your prior data dumps.
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .


        • #5
          Re: ICD monitoring

          Congrats on being a proactive consumer for medical services. Too many people are just lemmings doing whatever they are asked without question.

          I get a download four times a year. I have to initiate it by doing a download to a device then sending it to the clinic. I get a call the next day from a nurse who goes over the results and answers any questions that I have. I then get the report faxed to me so it will be available for my local doc. I would be less than satisfied with any thing less.

          Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
          Graduated to obstructed HCM by Dec, 2008.

          Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping


          • #6
            Re: ICD monitoring

            I decided to do a bit of research on the policy of the CC device clinic. First, I asked about how many times per year should be charged for remote monitoring, and the answer was 3 or 4, "depending on when the in-person appointment is scheduled." I take this to mean that you should simply request that your 4th download be made at the in-person appointment -- that way you can get a copy of the report and ask questions more easily since you're right there, AND you'll save a co-pay.

            I also asked about their policy on reports. CC is so big that I'm sure their policies are typical for the bigger places (me, that's why I prefer my local EP, with an annual visit to a specialist). In any case, the CC device nurse wrote this:

            "We tell the patients when they are enrolled in remotes that we will call them if there are any issues (we also encourage my chart sign up) but that they are free to call us about their report at any time. We do not call on normal reports at all. We handle requests for a [report] individually."

            The "MyChart" she refers to is an online website at CC --she also wrote that Medtronic and St. Jude have "good" websites -- but unfortunately, this is not the case. (Perhaps it's wishful thinking.) I signed up for "MyChart" when I had surgery at CC, only to find out that they don't post your records there at all -- you have to write (via snail mail) to request those, which then arrive (via snail mail with a bill attached). The Medtronic and St. Jude websites are similar. They give almost no information -- I think it gives the date of transmission, and that's it. It's really too bad that these websites are such an empty shell.

            ANYWAY, the upshot, as I see it, is this: you do have to be proactive and call the device clinic and ask for your results. They will send you a pdf copy via e-mail of your interrogation if you ask (you should quote the comment above).

            The head of the device clinic at CC is named Elizabeth Ching, and she's an authority on remote monitoring who writes articles in big journals and presents nationally -- clearly very good. Also, though, she focuses on the technical side of remote monitoring -- a recent article doesn't even mention communication with ICD-ers. (To me, that's sort of the dilemma of this device, so much technology with so little communication, but that's off-topic.) But, heck, if you call CC and get someone on the line who's not informative, ask for Ms. Ching! She is the big honcho.


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