Replacement pending..

Hey All!

Last year, about February, was the last time I had my PM checked. I was told I would probably need a replacement within the next year.... I moved to Jacksonville in October and have not acquired health insurance through my new job yet :(  so I’m waiting till May (when I will have health insurance).   I feel good, I haven’t felt my PM lately and maybe, just maybe, think the battery is dying.  I know I should go see a doctor and get it checked, but even if they tell me I need a new one right now I can’t afford it unless I have health insurance.  The doctor’s  visit alone is expensive enough without insurance.

Like I said, I’ve been feeling good, not too bad.  Yes, I’ve been getting a little more tired lately...I keep thinking, sheesh I’m 27 and I feel 80 sometimes.  I got my PM cause I was fainting and my heart was stopping, kind of a Neurocardiogenic syncope issue.

I’ve had it since I was 20...March 18, 2004 original implant date.  Any advice? Anybody know how to get a "free" check or maybe a discounted one?

Thanks!

8 Comments

You need help

by donr - 2011-02-28 01:02:32

Why not contact medtronics & tell them your plight. They may be able to help. Also - wander in to the Cleveland Clinic & explain your situation to them - ditto potential help.

A PM needs to be constantly monitored. It's not something you can do at your leisure. Especially if you suspect it is nearing EOL. From your description of how you feel, I'd say it's sending you a message RIGHT NOW. You suspect the same, or you would not have written the post!!! (Am I correct?)

That is exactly how I felt when mine hit the wall & dropped into its survival mode of nothing but pacing & then at only 65 BPM.

Good luck.

Don

A Self Checks You Can Try

by SMITTY - 2011-02-28 01:02:52

Hello Rachel,

I can tell you how to do a self check that stands a chance of being about 10% accurate. That is provided you know what the low set point is on your pacemaker.

If you know that then sit down and relax for a few minutes (10 to 15) and then check your heart rate. If the pacemaker has gone into battery saving End Of Life mode, your heart rate should be a very steady 60 to 68 BPM. I do mean steady, no variations. In EOL the pacemaker has gone into a mode whereby it shuts off some of its features to make the battery last longer. This includes checking your heart to see if it should send an impulse to make it beat. It just takes over like it knows best and sometimes that is uncomfortable, to painful. Another thing you can look or is when you start any physical activity that would normally increase your heart rate, If it is in EOL mode your heart rate may try to increase but you may have discomfort like a very bad arrhythmia.

As for being told you would probably need a new pacemaker within the next year, at best that is a guess. That projection is based on the battery being used up at a constant rate, which seldom happens. My PM was 9 years old and I was told mine had at least 9 months remaining. That was based on a history of my pacemaker pacing my heart about 3% to 5% of the time. It just happened that I requested some changes in my settings during that checkup which made my PM pace at more than 90% of the time. About 6 weeks later it went into EOL mode and had to be replaced. I was very much aware something had happened when it went into EOL. At that time I had not heard of the EOL mode, but the way I felt I knew something had to give and soon.

One other thing, as a last resort, you can always go to an ER complaining of a "heart" problem. I'm guessing that one of the first things they would do is check your PM after they find that you have one. And even if they find that you need a PM I doubt that they would be in rush to implant a new one if you have no insurance. Like I said, I'm guessing but that is what I would expect to happen if I went to the ER complaining of heart problems.

Good luck,

Smitty

Ha!

by donr - 2011-02-28 03:02:06

This comment is for Smitty, really. Been to the ER twice when they did not check my PM. To do so, they have to call a Mfg Rep. Would you believe that most ER's don't even have an interrogator? Would you believe that most hosp's don't have anyone on staff that can interrogate a PM?

I'm lucky - my cardio has several trained nurses who can do a download. They do it all the time. Things go suddenly south for you - call them, go in & get read in a few minutes. It's not planned, but there is usually one of the nurses there who can read it & tell if you have any sort of screaming emergency on your hands.

Don

Please READ

by KatherineLee04 - 2011-02-28 04:02:43

I'm 24 years old and have had my PM since I was a day old. I'm on my 3rd PM now and I'm in the same boat you're in. At 22 I was off my parents insurance so since then I've had insurance through work. I recently lost my insurance and I was told I have 6 months to a year. I wasn't keeping up with my pacer checks but I knew I had to go so I went without insurance and told the lady at the front my situation. She told me regardless if you have insurance or not you NEED to get it checked. There are plenty of programs you can apply for to help you pay your medical bills. She definantely reassured me and was extrememly helpful. And even though I was told 6 months to a year, the nurse told me it could be 6 months it could be a year OR it could be 3 months or sooner. Do you have a transmitter at home to where you can check it over the phone? That helps from having to go to the doctor you can check it from home. You can make a phone appointment. For having a pacemaker my whole life I totally understand your frustration but you really do need to get it checked...The being tired part.. believe you will know when your pacer isn't working anymore. If you have it for the same reasons as me you won't be able to cope if that happens. Literally. I would have to call 911. If you have any questions please ask anytime. Hope this helped. - Katherine

It Is What I get

by SMITTY - 2011-02-28 07:02:04

Don,

I don't know where you get your medical care, but I get mine at a hospital in a Central TX town of about 50K pop. I've been to that ER three times since I got my PM in 2000. One time for A-fib and twice for SOB. All three times my PM was checked out within 15 mixtures after I arrived. This place has around the clock PM technicians.

Most of my comments on personal experiences are what I have received at that hospital and until I know better I have no reason to think others are not getting equal or better treatment.

Smitty

What I have gotten is differrent

by donr - 2011-02-28 09:02:44

Smitty: My local hosp in an Atlanta suburb has to call a Medtronic rep. Took three hours for him to get there. He had to drive approx 50 miles. They have just recently been certified for PM planting. Perhaps they will add staff capability soon.

A major hosp in St Louis suburb. Had to call a Medtronic Rep. Took over an hour to get there. I was talking w/ the ER Doc in St Louis. He surprised me at their total lack of capability to support PM's. No one on the staff could do the job, even on a week day. I had called a cardiology practice across the street the day before to see if I could get downloaded in an emergency to preclude the Thousand plus dollar cost for an ER when you go in w/ a cardiac problem. I learned that all the cardiac practices locally had their own PM support staff.

In 2009 I was involved in a major auto accident in a very populated north Atlanta suburb. Got hauled to the closest Level II trauma hosp, luckily only about 15 minutes away at rush hour. They dragged me into the ER, read my necklace that told them I had a PM, nodded & grunted & continued on their way treating my injuries, which included a broken collar bone & somewhere between 8 & 12 broken ribs - on the RIGHT side, fortunately. Obviously, I survived. MY cardio had a cow when I told him after getting sprung from the trauma hosp that I had NOT been interrogated. Not a word was ever spoken about PM's. I never saw a cardio while there. He immediately had a complete office work up done - download; echocardiogram; X-ray to see if there were any damages to implant sites where harpoons were stuck in my Moby Dick. A new angle approach to the echo to check for any aneurysm in my aorta - there was/is, though very slight.

Maybe you have that capability in your hosp because you are a long distance from any other place that has it?

#2 Daughter is an ER Doc in a small, rural MS hosp about 50 mi from Jackson. They have defaulted a lot of specialty care to the major med ctr in Jackson. She is an expert at stabilizing & transporting folks to Jackson. Helicopter transport is frequently used. The professional capability & mentality to stabilize & transport is critical for those in Rural settings. A lot of city ER Doc's have a really tough time adapting to it & some never do, causing difficulty keeping professional staff slots filled. There is not even a cardiologist in her town. I was appalled at that till I realized that there is a cardiac center in a town about 20 mi away - that's how far we have to go just to get to our closest medical support.

Here in metro Atlanta we have at least 7 major hospital complexes w/ cardiac care units. Two of them are across the street from one another. I suspect that the capability has not been included in the suburban hosps because it is located so close and reasonably accessible from the interstate hwy system in the city.

Before you drop your jaw over the hosps across the street from one another, that is not uncommon. In St Louis, MO Baptist is across the road from St John's (Catholic/Baptist). In the Quad Cities complex in Iowa/Illinois, there are two hosps across the street from one another. One established by a religious order, the other secular in origin. And those are just the ones I know about.

Don

Sorry

by donr - 2011-03-01 12:03:31

I rubbed you the wrong way, Smitty. Sounds like you & I are like a pair of blind men trying to describe an elephant. You got the trunk & I got a leg!

Just told you what I've experienced in two major cities of a million plus citizens. I am completely surprised by what I have seen. I guess medical service develops in an area on different bases, depending on the local population density & geography.

I lived in Middletown, Iowa for a couple years. It was not unusual for folks to drive the 75 miles to Iowa City to the Univ of Iowa Med Center for treatment for some things I'd consider routine. MOF, before we left the town, we were doing the same.

Don

Don

by SMITTY - 2011-03-01 12:03:54

Don,

I guess what gets me the most is that while you haven't been a PM Club member very long, you frequently challenge what others post as a comment. Believe it or not some of us do know what we are talking about. One thing for certain is I don't fabricate one word I post here.

I don't drop my jaw at anything I read here. Where I live is 50 North of Austin, 120 mi North of San Antonio, and 150 mi South of Dallas. We are not stuck off in the sticks somewhere. And our hospital doesn't have to call in a rep. as there is at least two (Medtronic and St. Jude) on duty each day, plus the hospital has 11 PM techs that I know of. If you can believe what they tell us, they implant between 1,000 to 1,500 pacemaker an/or defibrillators at Scott & White Hospital each year. I also know they currently have 5 EPs on staff.

Smitty

You know you're wired when...

You have a dymo-powered bike.

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.