Update #1 on Exercise Output Data

Get used to it ... I'm going to hammer and hammer on this.

My St. Judes unit uses Merlin to relay data to Kaiser cardiologist, who receives weekly data summaries.

For past 1.5 years, I have been exercising my little heart out, and they have withheld from me the info that they receive exercise relevant data on a weekly basis.

Asked St Judes for a sample copy of the weekly data --- "Go talk to your cardiologist."

Requested sample copy from cardiologist who responded possibly affirmatively ... no response from nurse assigned to task of transmitting a sample copy.

We are each wearing the world's most expensive sports watch implanted, and I'm thinking, we are all being blinded to the data.

Could you each let me know, if you have or have not seen the data I am talking about? If so, who gave you the data?

Could you let me know if you think such data might be useful (I saw "Time at x% heart capacity per day" before the nurse snatched the report out of my view.

OK. ... I get it ... I'm a bit compulsive. But do I need an attorney? Do I need a hacker to gain direct access to my own pacemaker output?

Exercise output in 1.5 years since I died .... 575 miles hiking/walking, 40,000 ft elevation gain, 39 miles swimming.

13 Comments

logs

by Tracey_E - 2011-09-22 02:09:48

I don't think the reports have the type of data you're looking for. They mostly have the technical information- how much battery is left, how much voltage it's putting out, thresholds, what your settings are, things like that. It also says how many times you've beat, how many times you've paced, how much time you've spent in a certain range, how often you bump your upper limit. It's not an ekg, it's a report on what the pm has been doing only.

Reports

by Zia - 2011-09-22 03:09:30

Whether your doc likes it or not, or whether he/she thinks you can understand it or not, under the HIPAA law you have a right to any and all medical information information about your case. In my experience (working in medical records in a hospital) just quoting "HIPAA" acts like magic on those folks.

reports

by Tracey_E - 2011-09-22 06:09:15

Most of the stuff on the report means nothing to me, but my St Judes rep will give me a copy if I ask. I used to carry a copy with me with my emergency information when I travel.

I don't think you need an attorney but I do think you might consider a new dr. Some drs are more responsive and open with information than others. I have one now who will take the time to explain anything to me. He knows I have a good understanding of my condition and want to understand any changes. Ditto my St Judes rep. I've had the same one through 4 devices now and he's awesome. Not everyone understands what they say, some drs think we don't need to understand and don't even try, but I think it's just common sense. I can't tell you how many times I've gone to a dr outside the cardiology field who knows nothing about my condition and it's up to me to explain it, in some cases to point out that I can't have that mri or that med that affects your hr. We are our own advocates, but it all starts with information so for me it's crucial to have a dr who is open with me.

Like Tracey said

by walkerd - 2011-09-22 06:09:20

I dont understand most of it, but if I ask they give me a copy at my cardio docs office, its your information and you pay for it, you are intitaled to it. I for the life of me cant figure out why they wont give you a copy. Where are you from? By your name San Fran, havent read your bio. I have never been denied any copies of anything out of my medical records when Ive asked for it. Dont also think a lawyer will do anygood for anything.

yes, but

by Tracey_E - 2011-09-22 08:09:20

It doesn't say you spent 5 minutes at 150 bpm on 9/22, it will say you spent XYZ beats since the last time you were checked.

TraceyE

by sfbaywalk - 2011-09-22 08:09:58

TraceyE,

"Time spent in a certain range" is a key measure for cardiovascular conditioning.

TraceyE

by sfbaywalk - 2011-09-22 09:09:22

What I saw was a little graphic showing time at 80%+ capacity, time at 60-80% capacity, etc.

That little graphic and the associated numbers is what I am after.

Ditto! St. Judes rep????

by sfbaywalk - 2011-09-22 10:09:08

First I heard of this.

St Judes rep!!!!

by Hot Heart - 2011-09-22 10:09:36

loads of people on here talk about their st judes rep, why havnt i got one????? havnt even got a proper card about my pm, just a bit of paper!

HH

pm checks

by Tracey_E - 2011-09-22 10:09:48

Some drs do the checks themselves, some have nurses do it, some have a representative from St Judes come in and do it. Mine is the latter, it's the same technician who was there during my surgery to test it and do the initial settings. I have a plastic card also, a new one was mailed to me a few weeks after each replacement.

Change your name!!!

by donr - 2011-09-22 11:09:16

To "SFbayBULLDOG!"

Don't give up your fight to see the data & get someone to explain it to you.

Was that graphic a bar chart w/ the bars vertical? I see that thing every checkup when they - w/o being asked - hand me my print out at my cardio's office. I'm doubly lucky - a good bunch of folks in my cardio's office & it did not take much to wear them down by asking to see the printout.

Back to the graph. I have a Medtronic PM. The graph has about 6 vertical bars on it, giving the % of the time my heart spends at each rate between 60 BPM & 120 BPM. No data on WHEN it spends it there. I am bi-modal - meaning I have two peaks - one 70-80 & one 100-110. Always been like that. Apparently, a normal histogram only has ONE peak - at the base HR set in your PM; it trails down from there. If you are an exercise nut, like you say, expect to find a bi-modal presentatioin.

I'd be pretty PO'd at their reluctance to show it to you. Sorta like they are hiding something. Go for the throat!

Don

Why I want the exercise data

by sfbaywalk - 2011-09-22 12:09:28

I've been swimming a lot, and am uncertain about the extent to which I am elevating my heart rate into the cardio zone.

The cardio educator says to exercise at a level of intensity where I can still talk, but can't sing. That rule doesn't work for swimming.

I have my personal spreadsheet notes going back 1.5 years of each exercise activity, duration, speed, commentary, etc.

Now I am disturbed to find that there exists a record of objective data about my exercise intensity, and no one told me, or thought I might find it useful.

Blass you donr!

by sfbaywalk - 2011-09-23 12:09:22

I feared I have been writing in an obscure Romulian dialect.

I am posting to a sub-forum on sports and exercise. Seems self-evident that readers have an interest in data on their time spent in the cardio-zone.

The graph is labeled "Exercise". There is a vertical bar for each day - seven side-by-side

Each bar has about 4+ tiers. While the nurse quickly snatched the chart away from my view, it appears that the top tier shows time spent at 80+% of capacity.

Today I beat my best time for one mile swim time by 4 minutes, 3 seconds. When I got out of the pool, I broke a sweat. That exercise should show on the St. Jude's data output.

You know you're wired when...

You have an excuse for being a couch potato.

Member Quotes

I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.