Pacemaker questions

[geckley]

Since I now have one of these gadgets in me. Is there anything I should know about them Mine is a medtronics with a St.jude lead and a Medtronics lead. They set it to work at 60 bpm. I got to tell you I don't know if it was the valve replacement or the pacemaker but I am sure alot more alert and awake now. Just want to know if there are any quirky things anyone has experienced.

 

[deek]

Hi Ghon. So glad to hear you are doing well. I have a Medtronic dual chamber pacemaker and I don't even know I have it other than it made me feel better...for a while...now I need my mitral valve repaired. Did you get a intramuscular implant? I assume you did because you're young and wouldn't want it sticking out there. Mine was implanted over a year ago now, intramuscular, and like I said, I don't even know I have it. No problems with cell phones, electronic and such. Again, glad to hear you are doing well.

Dee

 

[mhornung]

I have a medtronic pacer as well. I am on my second one and it works fine. The problem I have is with leads. I fractured them in November and I didn't realize the would fracture so quickly. I am fully paced-100% heart block so I am alert like you almost every beat. I am going to Boston next week to have old set of leads removed. I have been looking everywhere for people in my situation-under 60 and paced. I found this site over the weekend and am excited about finding people with similar stories.
mike

 

[geckley]

I told the doctor that I like to back pack and hunt. I wear a back pack with almost everything I do. But..... I feel the thing in my chest so I don't think it's intramuscular. The cool thing about this site is no matter how bad you feel about yourself there is someone here that has had it tougher. And the attitude of everyone here is so positive. It has been an inspiration to many.

 

[Lynlw]

I have a medtronic pacer as well. I am on my second one and it works fine. The problem I have is with leads. I fractured them in November and I didn't realize the would fracture so quickly. I am fully paced-100% heart block so I am alert like you almost every beat. I am going to Boston next week to have old set of leads removed. I have been looking everywhere for people in my situation-under 60 and paced. I found this site over the weekend and am excited about finding people with similar stories.
mike

Hi Mike, You also might want to check out the forums at the Adults with CHD ORG. http://www.achaheart.org/ Quite a few members are in the your age range with multiple surgeries and pacers.
My son had a pacer for about 6 years, his was implanted in his abdomen, when he was 10 because following his cath before his ER conduit surgery he went into complete heart block for a few months, but then got out of it. He went in a few other times following caths, But for the most part his heart would start working right again. Anyway the point of this is when he was 16 he wasn't being paced BUT his pacer started malfuncting so had to be removed, when they took it out they found his leads were also fractured. Since his heart wasn't in heart block at the time and they wanted to put his next pacer in his shoulder area, they didn't replace it. He'll probably need another one in the future but so far has been doing well, it's been out 4 years and he's had 2 heart caths and 3 surgeries and hasn't gone into heart Block.

 

[briansmom]

Welcome to the forum, there is a wealth of great information and people here.

My son is 18 and is fully paced also. He raced off-road motorcycles before all of his heart problems. Unfortunately, his heart function is not good enough to continue riding motorcycles so now he drives and races an off-road buggy. He recently had his pacemaker and 1 lead replaced because his P waves are really tall and his old pacemaker (1 1/2 years old) could not handle them. They replaced the lead because it was one that had been recalled. Our only worry is him breaking his collar bone. The docs are worried that it would fracture a lead so they are not thrilled that he is an off-roader.

 

[AgilityDog]

Oh yeah, under 50 and paced. And de-fibed. Sports with a pacemaker can take getting used to, and some adjustments to the pacemaker settings.
I gave up bird hunting-can't hit the broad side of a barn anyway, and I've always bruised with a shotgun. Now I don't want to bruise more with the coumadin. But the dogs do the fetching for the hunting buddies, and mostly we just retriever train anyway. Guns are generally unloaded training props. I'm not required to shoot a gun in AKC tests, and I'll just skip the UKC tests. The training involves hiking over cow pastures--it can be rough some days, I'll grant you that.

I also run agility, and the sprinting with a fast dog is a bit of a bother. I tend to run out of air (run 175 yards while twisting, turning, waving your arms and hollering commands at the dog--try it, you'll like it) because my top end HR is just lower than I'd like. But so is my V-tach (starts about 180) so I'm stuck with a top end HR of 155.

My EP says to tap on the pacer a bit before I start, to get the heart rate up.
I have my responsiveness set just one setting below "teenager" and it seems to work for me pretty well.

I'd say you have more problems with the backpack on the pacer and wires than the functionality issue. Do be careful with the leads.

 

[dtread]

Go to www.pacemakerclub.com

Its a forum similar to valvereplacement.com only about pacemakers and ICDs

I also have a Medtronic with St Jude and Medtronic leads. Mine is an Adapta ADDR01 and was originally set for 60 but I had them reset it for 55 and then later 50, which is what its at now, and that works real well for me. Mine only kicks in if my heart is beating too slowly. The pacer I have is rate responsive, and mine only functions about 7% of the time, the rest of the time it is just sitting there idle. Yours may be different. Depending on what your heart rate is, my opinion is that you do not want the pacer kicking in when its not needed. But everyone has a slightly different reason for having a pacer in the first place, so you need to discuss with your Cardiologist if you are having problems or think it may need adjusting. It may take a while to get yours adjusted so it is optimum. You can also go to the Medtronic site and download the manual for yours, and Medtronic has been very responsive whenever I've sent them a question (and I've sent them several).

The pacer has not really been an problem with me, and I pretty much forget about it most of the time. I work in telecommunications, and our telecom equipment uses a device called an Uninterruptible Power Supply (UPS). The UPS unit kicks in if there is a power outage and keeps the power going until the main power kicks back in. There are also smaller versions of the UPS unit that are called "mini-UPS". So I tell people at work that I simply have a "mini-UPS" unit and they smile, knowing immediately how it functions.

 

[c terra]

pacemaker too !

pacemaker too !

I also had to have a pacemaker (medtronics) a week after my BAV replaced.
I had total heart block and had several scary times while in the hospital before my pacemaker. Several times flat-lined which pretty much made a
pacemaker the only way.
It's been 8 weeks since my OHS and things are better now. But was very nervous at first that everything was working ok. Have had and still do have
platations daily and lightheadness. The doctor has checked the pacemaker
3 or 4 times since Nov. and the last time things looked fine. Although, the time before she changed my settings to 80/140 (HR).
I have a questions ? How do know when your leads become fractured ? I too
am paced every beat. Do you get that feeling before you flat-line ?
Don't want that feeling anytime soon !!!!!
Also, how long is it before you don't feel or have pain where the pacemaker was put ? Still having pain and a lot of soreness !

Thanks
c terra
BAV Nov. 5, 2008
Medtronic pacemaker Nov. 12, 2008
Mitral valve leakage waiting

 

[nickm3]

Had mine installed about a year and a half ago when I was 48, it is a guidant dual chamber device that was required for partial heartblock. Since my AVR redo surgery 1 year ago it has been working full time. Had some problem with leads dislodging but probably at least partially my fault by doing too much during the first few weeks. The last revision was to relocate it under the muscle as it looked as though it was going to pop out of my skin. If there were to be a break in the skin it is really bad news a far as possibility of infection especially with a mechanical valve. You can feel when it isn't set correctly but everything is good now though I do sense that I am limited with the upper limit set at 150 bpm.

No problem with electronics, even tried electric arc (TIG) welding with no symptoms. Only thing I have ever experienced was that I sensed a problem when I was in the vacinity of high tension electical wires. As soon as I moved away I felt normal again.

Nick