Is there any manual?

Hello my dear pacers. I'm now on my 28th day with a pacemaker. I've visited my doctor twice for settings. During the first 4 days, my electrophysician set the pm to 80BPM. I could not sleep as my heart poundered inside my chest. I asked him to slow a bit. He set to 75bpm and a fuction that I did not know of, which is a rest mode. He set such rest mode to 55bpm so that I could sleep well. Funny, I didn't know that such pm could be so "intelligent", but, of course, forgive me, friends, because I cannot be pm expert in a month. However, I've read here some codes like VV, VA, R-R and my St. Jude Medical pm does not informe much about them. Is there any manual or book or site which could help me and other pm receipients to understand more about the device that we will have to live with for ever?
Unfortunately, in my specific case, my new pm has just helped me do cope with bradycardia. It has not helped much to treat a flutter which is still present. After taking a considerable amount of Amiodarone cloridrate, we'll try to deal this flutter with cardioversion in the end of this year. But I can say that my life is a little better with my pm than without it.
I live in Brazil and I still haven't found a site like this. I will be in eternal debt to the creator of this site for such wonderful information that I have found so far. My very special thanks for you all.

13 Comments

Manuals

by donr - 2013-07-18 11:07:02

Go to top left column on home page. Come down list under the word "Clubhouse" to second section "Information." Benmeath that you will see "Web Links." Click on that & it will lead you to a place where you can see a manual for your PM.

The best to you w/ the manual. it will tell you everything you ever want to know - and more.

If the manual generates questions, come back & ask us - I'm sure one of us can help you out.


Don

Angry also

by Duke999 - 2013-07-19 02:07:52

I agree with Cabg Patch. I was not provided with the manual neither. Everything I learn about the PM is through this site, not from my EP nor PM tech. They teach me NOTHING about my PM. I didn't even know there's such thing as settings for my PM. I'm angry as heck because they didn't even tell me a single piece of basic information like what my low and high setting is. I really don't get these people. Why don't they inform us about anything until we have to ask about it? I really don't get it.

Add

by golden_snitch - 2013-07-19 04:07:08

In Germany the cardio would definitely not be allowed to give the device manual/programming guide to a patient. We have consumer protection laws here that are very strict when it comes to the whole medical field. There were times when I called my device manufacturer, and the first thing the rep told me was that, legally, he is not allowed to give me information, I need to ask my cardio, and then if the cardio doesn't know, he, the cardio is supposed to call the manufacturer. What we do get here after the implant is a patient brochure about the device, and of course the identification card.

Inga

Manuals

by golden_snitch - 2013-07-19 04:07:58

Hi!

I'm not sure which manuals you are talking about. There are implant or device manuals, and unless you're a cardio or bio-engineer or something like that, you'll have a very hard time understanding all the information in these manuals. I do occasionally look into them online, if available, in order to look something up; I know exactly what kind of information I'm looking for. If I'd imagine reading the manual as a pacer newbie, not knowing what exactly I want to know about my pacer, that manual really isn't much help. It's made for professionals. I checked the one for the Medtronic Adapta (and some other models): It has around 200 pages! Yes, it does very well explain every single setting, every parameter, every mode, but even though I'm someone who really wants to know all the details, I'd say this is too much information. Like I said, I check those manuals when I have a specific question, but I'd never ever read the whole 200 pages. Anyways, if you want to have a look at a manual, go to Google, type in your pacemaker model (manufacturer and model name) and add "manual". If there is one available online, it'll show.

Also, we need not forget that there are in fact quite a lot of patients who do not wish to know all the details, and there are also patients who never experience any problems with their pacemaker, so that there's not really a reason for them to learn what their settings are. If I were a cardio, I wouldn't try to teach all of my device patients what their settings are; I'd explain some basic settings or those that are causing trouble to those patients who ask me. I think what would be nice to have for those patients is a information sheet that briefly explains those settings that you can find in your pacer report. I agree that, if you ask, the cardio should provide you with information. However, I do not agree that everyone should be confronted with all those details, no matter if they wish to learn about them or not.

I consider it to be a part of my job as a patient to ask questions and also educate myself. It's my experience that when I keep asking questions or tell my cardio/EP something that I read about, he knows that I'm one of those patients who needs the details - and so he'll explain them to me. If you, however, feel fine and do not have any questions about your device, that's okay, too. People often come here asking "What should I ask?" Honestly, I don't like these questions, because, hey, obviously you're doing well and if you cannot figure out any questions yourself, then why have others tell you what to ask? I don't understand it.

Best wishes
Inga

Informed consent

by Harrie - 2013-07-19 05:07:45

Here in Australia we have a thing called "informed consent". Basically it means that before undergoing any medical procedure a patient who is competent to make an informed decision has to be fully informed about the risks, benefits, alternative treatment options, possible risks, side effects and benefits of treatment. If there is a patient manual I'd suggest that informed consent would require that manual to be placed in our hot little hands to do with what we will. If there isn't a patient manual then there should be! We have a foreign device implanted in our bodies and wires into our hearts - a minor procedure according to the medical profession, but as this forum clearly shows not minor to us. We shouldn't have to prove to our medical providers that we are capable of understanding what the devices are doing. My tech and cardio discuss what they are doing as if I'm not there.

I don't like..

by Duke999 - 2013-07-19 09:07:34

I don't like my PM tech nor EP. At times, I think they don't know what's going on with or how to program the PM which is scary. Each time I see them, they rush me out of the door. I didn't really know any better because I'm still kind of new to the fact of having the PM in me. Anyway, with so many options to program the PM, I really think the PM tech has no clue to learn it all, so it is up to us to tell them what we want for our settings in order to make us feel better. I think they either don't really care or they just have no clue what we're going through. This is just my thought.
Many of you on this site are more knowledgeable, more caring and concerned for each other than my own EP and PM tech. I thank you all for your inputs, knowledge and advice on this site.

different

by goldenoldy - 2013-07-19 12:07:24

We are all different, some just do not want to know a thing except that its working and doing its job. Others (like me) want to know everything, appreciating the technology and soft ware that works away mostly unfelt. I ask, fortunately the techy I have is great and talks me through everything she does and what the download shows. Maybe it varies from country to country?

I got my manual

by KAG - 2013-07-20 01:07:04

I went to the Medtronics site and was able to download the Clinician Manual, 330 pages, for my model PM with no problem. I agree with Don that I think it's just a company policy. They probably don't want to overwhelm folks who don't want that much detail. As a retired engineer that's not me. I know on other research I've done when they really don't want patients getting medical info they have a requirement for a Drs password to get into the site.

I recently was able to sit down with not one but two Medtronics techs and go over detailed questions with them. I even had them move the chair so I could watch the monitor they use to do the PM interogations. They seemed thrilled that I actually wanted to learn about my device and were very happy that I actually got the manual and we could talk modes and settings. It was a great experience. I wish everyone who wants the details could do it.

Kathy

Patch

by golden_snitch - 2013-07-20 03:07:38

I changed the username.

Here, you get the patient brochure which is, depending on the manufacturer, more or less detailed. It tells you things like how the heart works, what the pacemaker does, what you're supposed to stay away from, what to watch out for (signs of infection etc.). The manual with all the different parameters, setting options etc. is intended for the physician when he programs the pacer. Nevertheless, some manufacturers make these manuals available online. You often have to pretend that you're a medical professional to get them, though. Usually a window pops up asking whether you are a professional or patient; if you click on patient, you'll only get the basic information. That applies to the U.S. websites, too, I have checked it. So, I guess there is some kind of law in the U.S., too, that these detailed information are not meant for the patient.

Best wishes
Inga



Discussions with techs and adjustments

by Harrie - 2013-07-20 07:07:16

It's great that you were able to discuss your settings etc Kathy. Makes me laugh though. The manufacturers of these devices are moving steadily towards minimising patient contact with health care providers. That's what home monitoring is about. Read the blurb - less face to face visits is touted as one of the great advantages of home monitoring. Don't get me wrong - it's amazing that my info gets downloaded every night and sent off to Germany. It's great to know that if there's a problem my clinic here in Australia will receive an orange or red alert and call me in. It's comforting to know that theoretically at least they' ll review my data every 3 months and again, call me in if here's a problem. But... This isn't really conducive to adjusting settings according to my needs which may change over the course of the next 12 months. More about the technical functioning of the device. Of course I do have their phone number if I have any problems....

Manuals in the US

by donr - 2013-07-20 09:07:46

Inga: I just checked the Web Link line on the PMC home page. Went to the whole family of manuals for my PM & was able to down load them & could print them out if I wanted.

I have a Medtronic Versa device.

If there is a US law about restricting their distribution, Medtronic is breaking it. I suspect it's more a company policy against wide dist of the documents - but it is not really enforced.

The more you tell me I can't read something, the more I WANT to read it!

The manuals they give you when you leave a US Hosp absolutely SUCK!

I read mine & decided that were I to follow it, I'd become a cripple it was so restrictive. So, I tossed it & went off on my own figuring out what I could & couldn't do.

Don

Medtronic website

by golden_snitch - 2013-07-20 12:07:30

Hi Don!

Well, I tried the Medtronic website, and you do not get the "real" manuals from their patient website; you get it from the health care professional website:
http://manuals.medtronic.com/manuals/main/region
The site states that they are intended for health care professionals. That is a restriction. I guess that's the only thing they can do, if they want to make manuals available online. Having every professional who should ever wish to read a manual register or something like that would probably be too complex. Who knows, maybe the manufacturers are not allowed to publish those manuals on their patient support websites. We cannot rule that out.
When you go to the German Medtronic website, and wish to enter the health care professional section, a window pops up explicitely stating that this website is ONLY intended for health care professionals, and that patients find information at... To continue you have to click "OK". They do not or simply cannot check that you really are a professional. The thing is as a patient, if you want to enter, you have to pretend that you are a professional.

Also, U.S. laws might not be as strict as within the EU with regards to drugs or medical products. In Germany you are not allowed to advertise for prescription drugs; in the U.S. you switch on any TV channel and you'll see loads of these advertisements.

Inga

Professional Manuals

by donr - 2013-07-22 03:07:11

C

You know you're wired when...

Your signature looks like an EKG.

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