Medtronic mycarelink
- by katz
- 2020-05-27 12:52:57
- General Posting
- 2741 views
- 10 comments
Hi Guys , my pm is going to need changing in around 6-9 months had it 7 years, I have 100% heart block, went for my check up today & they sent me home with a machine Medtronic my care link, the nurse said it was to save me coming to hospital so I could send my reading from home & told me to keep near my bed but not why , I'm rather nervous about trusting this machine when I'm due to use it , personally the more I think about it I would rather be checked at hospital for peace of mind , anyone else use one pls ?? Also is it doing something else if it has to be at side of my bed ?? Any advice help ..thankyou
10 Comments
Medtronic mycarelink
by katz - 2020-05-27 13:24:44
Thankyou for your reply , nobody has mentioned registering it to get emails , I've just plugged it in at side of bed , can I ask why is it at side of bed does it monitor me while I'm asleep ? Thank you
Medtronic mycarelink
by Gemita - 2020-05-27 14:26:56
Hello Katz,
I no longer have a Medtronic mycarelink connection with my pacemaker clinic but I did for three years when I had a Reveal Linq implanted device.
I recall my clinic had an automatic download set up every night (around 0100 hours), so that my previous 24 hours of heart irregularities could be assessed and if anything serious was seen, they would telephone me. You really don't have to do anything, just make sure that the telephone monitor is on (!) and functioning from time to time.
If on the other hand you are unhappy to be monitored in this way, I would tell your doctors that you would prefer to go to see them more regularly for checks, if this is what you have been doing (although in the present climate you might be safer with a home monitor until things settle).
My monitor was at the side of my bed since it has to be within 10ft of our pacemaker to pick up a good signal and to successfully send/download the data to your clinic. The monitor display will warn you if it is not receiving a cellular signal in which case you can move your monitor to a better position (always though no more than 10ft away from your pacemaker). A better position could be closer to a window for example. My monitor was placed on my bedside table. My monitor would connect to my pacemaker at 0100 hours each night while I was asleep (or often awake) and automatically download all the data for the previous 24 hours. When that was done, the monitor would just stay quiet unless I woke it up to do a manual download at any time since I had a patient assistant monitor to use in case of any difficulties
Questions
by AgentX86 - 2020-05-27 16:16:10
There are some questions you should ask, like what the box is going to do? How often? Why? Mine doesn't do anything unless I tell it to. I'm supposed to send them a record twice a year (see them twice, for four "interrogations" a year). That's all. I have to put the puck over my PM to get it to work. Other than that, all it does is aggravate me when the (very bright) lights start flashing in the middle of the night (if I bump the nightstand the puck gets loose on the cradle and it goes crazy). II've thought it was lightning.
It's also useful if you feel something strange, you can capture it on the box and send the PM state and EKG to your doctor. That's under your control, too. Some here just unplug it, throw it under the bed, and forget it until they need to use it.
OTOH, some are constantly monitored and the box, and PM, are querried once a day to see if everything is alright. It all depends on your condition and your EP.
Medtronic mycarelink
by katz - 2020-05-27 16:54:14
Thank you all who have commented up to now I appreciate it , all I was told was it was instead of coming back to hospital for a check up so I could do it myself in 3 months time , nothing was said about phone hook up or emails or it working daily to monitor me , that's why I wondered why I had to keep it at side of bed .
Katz
by Gemita - 2020-05-27 18:01:58
As you can see, each one of us has had a different experience, depending on our need for monitoring and the monitoring equipment we have been given. I am guessing here, but it looks as though you only need to transmit your data once every three months and you have to physically do it yourself - it won't happen automatically.
I would make a note in your diary for three months time and store your monitor wherever you wish in the meantime (unless your clinic wants you to download anything worrisome on an as needed basis?). If this is the case, then you could keep the telephone monitor beside your bed.
You will get used to it and soon be in complete control. Good luck
home stretch
by dwelch - 2020-05-28 02:44:56
It is all about the home stretch. The estimated life is always bad even when you get to months. What they are looking for is to see if you go into safety mode before the next visit. Safety mode lasts months but not 6 necessarily so if your device switched over on the way out of the building that day, would it make it to the next 6 month or 1 year visit? Not.
If you did not have a way to check from home then this is to save you coming in every one or two or three months. I am 33 years with pacers, first chunk of that no take home box then started getting the phone ones with the magnet (still have both of them, they didnt want them back), somewhere on device number 2 when I moved and got a new doc. Once I passed some number of years or dropped below some voltage (for any of my devices, all of the docs) the annual checks became every 6 months. The phone checks would increase if insurance was willing to pay for them. The current EP, bumped it up to monthly as we got closer to the end, by this time they could do the checks themselves and were willing to pay for the increased rate even if insurnance wouldnt. They dont use the phone checks any more. Device number four was cut short 3-4 years in to replace with a biventrical it did not have a modern take home box I still used the phone/magnet box. I refused the take home box with number five so my punishment is 6 month visits, I dont get to go annual. Will see what they do with me in another 3-4 years when this one gets closer to end of life.
Katz
by Marybird - 2020-05-29 21:51:52
Your situation sounds somewhat similar to my daughter's. She had a Medtronic dual chamber pacemaker implanted in January 2012, and is coming up for a generator replacement later this summer. She was given a home monitor when she got the pacer, for manual transmission use as needed, though she has had routine in office checks every six months or so. She got an updated monitor when she changed doctors, and now that her pacemaker has reached close to its "end of life"or whatever they call it, she has instructions to send a manual transmission every three months.
If your doctor/clinic gave you a monitor so you can send pacer tramsmissions to them, they should have given you specific instructions on how to use it, and how often to send those transmissions. You could also ask them if they notify the patient in any way (either email, phone call or other notification) if everything is ok-for sure they will notify you if it isn't. And you can call them any time you have a question.
Generally there is an indicator on the monitor (my daughter's has a check mark indicating the transmission was sent and received) showing your transmission was successful. But if you use it, and are uncertain whether the clinic received it, you could call them and ask about it. As you use it, you will probably become more confident that it's doing what it should and all is well.
Though others have mentioned the use of automatic (ie, wireless ) monitors, including the Medtronic MyCareLink which is an app used with a smart phone. , it sounded (as Gemita mentioned) from your post that the monitor you got is intended to be used manually by you to transmit your pacemaker reports to your clinic. It may very well be that your 7-8 year old pacemaker does not have the wireless or bluetooth capability to automatically transmit your pacing results to a transmitter. So you have to do it all manually with the "paddle" you put over your pacemaker, to the transmitter, and send it manually to your clinic. That's how my daughter has to do it.
I imagine when you get your new pacemaker generator this year, it will be paired to an automatic transmitter (which could be a nightstand model or a phone app, depending on the pacer model and your preferences. I personally think the MyCareLink phone app is as cool as can be, my sister has one with her Medtronic pacemaker. I wish I had one, but I have a St. Jude dual chamber pacemaker and its paired with a nightstand model automatic transmitter (talk about having no idea when transmissions occur) and there is no app available for that pacemaker.
In any case, in your shoes I'd contact your clinic with any questions or concerns you may have.
just got a call
by dwelch - 2020-05-30 11:48:10
They are sending me one as well. I didnt put up a fight, whatever. I still think the primary reason for you is you are in the home stretch, but at the same time with coronovirus any way to keep your number of office visits down is a good thing. I was due for an in office checkup which I canceled, their office is in a hospital, not worth the risk right now. So they are sending me a box...
Reading forums here for years, some places dont have in office visits (well before COVID-19) unless the take home box indicates a reason. I suspect that COVID-19 is going to push a lot of us into that mode.
Good luck, be safe, you likely dont HAVE to have it on all the time, just periodically or during scheduled checks.
just got a call
by AgentX86 - 2020-05-30 20:50:13
I got a call about two weeks ago telling me that the device clinic was closed (they're in the cardiologist's office, not a hospital) and to send them a remote on the day of the appointment. I have to go in twice a year to get my clock changed (DST/ST) and this was one of the times. Good thing they screwed it up last time and left me on DST. ;-) I'd rather have my rate throttled back 11:00PM to 5:00AM than 1:00AM to 7:00AM.
I don't like remote interrogations because I don't get the data. I just get an "everything is peachy" letter. I'd rather have some specifics, as well as discuss the current settings. The next appointment never seems to get made when I do a remote.
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Member Quotes
Yesterday I moved to a new place in my mind and realized how bad I felt 'before' and the difference my pacemaker has made.
carelink
by new to pace.... - 2020-05-27 13:12:26
not to worry have mine by the bed and it does what it is suppose to without my feeling anything. Medtronic ssnds me an email to let me know transmission was succesful. You just go on line and regrister with them. Can also send notification to another person of your choosing. In the begininng they sent me a schedule of when these take place. Put it up on the wall by the bed.
At first i to had concerns, but now do not worry. They walk you through the set up.
One of the others said hers is under her bed.