just got pacemaker
Hi. I am new and sure could use some words of encouragement or support. Just had my PM surgery 2 days ago. I am feeling a little overwhelmed right now and confused because when I left the hospital, the tech tested my pacemaker and said I am 100% dependent and it freaked me out. I have two leads. He said it should last for 7-8 years, but I am wondering how it possibly can when I am 100% dependent. Before I had this done, I had bradycardia but I really didn't have super bad symptoms, and now all of a sudden I am 100% dependent. I thought my heart was going to do some of the work. Also, I have a lot of anxiety and have had most of my life, but now it is even worse. Today I almost fainted. I'm scared if my device fails, my heart will stop. Any advice would be appreciated. Thanks so much.
11 Comments
dependent
by Tracey_E - 2010-02-04 10:02:08
If your hr was lower than the pm's minimum setting, then you are pacing all the time. They call that dependent, but really you're not dependent because if it were to fail (VERY VERY rare!) you'd just go back to feeling how you did before. Your heart will NOT stop,it will beat like it did before the pm.
Pm's almost never fail. In the very rare instance they malfunction, they have a back up mode that keeps you at a steady 60 bpm. You won't feel so hot without all the functions, but you'll be perfectly safe. But the odds of that ever happening are miniscule, pm's are incredibly dependable.
I've been dependent for 16 yrs now. I say dependent because if you turned the pm off, my hr would drop into the 20's and I'd pass out pretty quickly. I feel terrific. I don't even give the pm a thought. I'm active, I have kids (both born after the pm), I work out, I own a business, I volunteer a lot... in other words I rarely sit still! Most people have no clue I have a heart condition, they just see another busy mom. It takes some time to wrap your head around the whole thing, but know that there is a light at the end of the tunnel and a perfectly normal life for you. Give yourself time to heal and adjust, then learn to trust the pm to help you out. You may not have noticed symptoms before, but many of us notice an increase in energy once we get the pm.
Your heart is still doing ALL of the work! The pm just watches. If it goes too slowly, it generates a pulse that causes a beat. Your heart is still doing all the beating, it's just that the signal to beat is coming from the computer instead of you sometimes.
If you almost fainted today, you should ask to be seen and tell them what time it happened. They should be able to interrogate the pm and see what's going on. Odds are your settings just need adjusted. Or were you on pain meds? They can make you feel bad sometimes.
Good luck! Please vent and ask your questions here. We've all been there and we'll do our best to get you through the tough time.
thanks for being here
by Suemarie - 2010-02-04 10:02:31
Thanks SO MUCH Wendy for such great advice and answering me so quickly. I can't begin to tell you how much it means to me right now. I was feeling really sorry for myself and kind of like I wouldn't be able to have fun any more or walk my dog for fear I would faint and things like that. I imaged myself just staying in my home and never leaving. Then people were trying to cheer me up by making jokes about it and I just felt like crying because it wasn't even funny. Knowing there are people here to talk to is a blessing. Thanks for the chins up and hugs (I sure needed it).
Sue
So many of us have been there
by wenditt - 2010-02-04 10:02:56
Welcome friend. So many of us have been in your shoes...some of us still are. Some of us are slowly working on getting to a better place with our anxiety.
This is a life changing event. A lot all at once. A lot to take it. I thought for sure I would never recover from the traumatic stress this unwelcomed new neighbor brought to my life. I am almost 5 months post op and could care less that I HAVE a pacemaker. It's the extra thumps and bumps that the pacemaker brings me that make me nervous. But ya know what? I am friends with "it" now. So it's only a matter of time before I become friends with the thumps and the bumps too.
Believe me...if I can do this...you can do this. A few things helped me along the way.
1. I would constantly asked questions. To everyone...every chance I got. I felt like "if I could just understand then I would calm down." And it's working. I am certainly not as educated as some others on this site but I am finding my own comfort level relax when I get more answers.
2. Use this site. There are wonderful people here who know so much who can help you. They will stay up at night with you and chat when you are in a tough time, they will give you new ideas, they will explain. They will become like family.
3. Find doctors and PM nurses or techs who will be nice to you! They will make all the difference in the world. When you are comfortable with your doctors and they take the time to explain, you will begin to trust them and you will begin to calm down.
YOU CAN DO THIS!!!!!! Chins up Sue. Sending you hugs and then best of luck
Wendy
Don't Be Afraid
by SMITTY - 2010-02-04 10:02:56
Hi Suemarie,
Welcome to the Pacemaker Club.
Just from reading you short note I'm going to guess you may have gotten a technician that started their mouth running before their brain was in gear.
Unless something was done to your heart other than just implanting a pacemaker and leads, if that pacemaker stopped completely --- the chance of that happening is somewhere between zero and none --- your heart rate would simply revert to what it was doing before you got the pacemaker. Of course I can be totally wrong but I base my comment on what happened to me when I got my first pacemaker.
I too got a pacemaker because I was diagnosed with bradycardia. When I left the hospital the low setting on my pacemaker was 80 which meant it was making my heart beat essentially 100% of the time. The only time it got a rest was when I did something that would make my heart's natural pacemaker send my heart rate above 80. Then the PM could get a rest. After a few months the low set point was lowered to 60, I did just fine and my pacemaker was working less than 5% of the time and lasted 9 years.
Now if I can make a suggestion, contact your doctor and tell him/her how concerned you are because the technician told you that you were now 100% PM dependant. In the meantime don't be afraid of your pacemaker stopping, or anything interfering with is operation. Also, as time goes by if you are like most of us you will find that a lot of the people doing checkups on pacemaker don't really know sheep dip from wild honey about pacemakers. They have been taught where to place the electrodes and to press certain keys on the computer, but they do not truly understand what they are doing. They want to feel important, I guess, and they have us that knows even less about pacemakers than they do so their ego starts their tongue flapping at both ends.
Anytime you are concerned about what your pacemaker is or is not doing contact your doctor. As a backup, you can post your concerns here because we do have some people that understand our fears and do know what they are talking about when it comes to pacemakers.
I wish you the best,
Smitty
I can't take the credit
by wenditt - 2010-02-04 11:02:14
Hi Sue,
I wish I could take the credit for my post but really I never would have gotten where I am (and I just still might be an official headcase...LOL) if it weren't for the people here and the path I have had to take to get here.
The first few techs were not nice to me. I was scared, crying and terrified ALL THE TIME. One tech in particular....Martha actually....said to me "Stop crying, your pacemaker is working, get over it already!" Needless to say I found another tech ASAP. And I hope Jesus will forgive me for all the ways I have kicked her *ss in my imagination! LOL...The new one I found takes the time to explain things to me. She actually cares about how I am doing. And I think people who have a hard time adjusting need more people like that around them. If you can't find those people....then keep looking. And know that this site is full of those people. :-)
Tracy is right. Someday....and who knows when...you will forget you even have it. You will be running faster than your dog and wondering why he can't keep up! How fast you get there is all up to you. But I know if I can get "there" or as close as I am now.....than anyone can!
And by the way fainting is no fun. Before I was diagnosed I was 8 months pregnant and fainted in the bathroom. Whacked my head pretty good on the water nozzle thingy. Fainting is no fun. So in a way....at least it's one less thing you have to worry about now!
Two Hugs This Time.... :-)
Good Advice
by timberhitch - 2010-02-05 06:02:52
Hi Sue,
Somehow I just lost my post regarding your PM recovery because my situation is/was very similar to yours except I had no symtoms. Anyway, I agree with what was said above. Things will get better for you as they have for me.
Timberhitch in Wisconsin
Pacemaker Dependency
by pacemaker writer - 2010-02-05 09:02:10
Hi Sue! I'm not a pacemaker person but I write for pacemaker companies (I write manuals and training materials).
100% pacing is a term that means simply your pacemaker is pacing 100% of the time. This number often changes, even over the course of one day. But even if you're being paced 100% of the time in general, that just means your heart's natural rate is lower than the heart rate programmed into your pacemaker.
(For example, I don't have a pacemaker and my heart's natural rate is around 74 beats a minute. If you put a pacemaker in me and set the pacing rate to 80 beats a minute, I'd be paced 100% of the time, too.) So it's not a function of your heart by itself, it's a function of how your heart and your pacemaker are interacting.
There is a term called "pacemaker dependence" but it's really not what your tech meant. It is actually controversial. The experts can't decide how to define it. For some docs, they say you're pacemaker dependent if your heart won't beat at a normal rate without a pacemaker, but other docs say that's not dependence--you would survive without a pacemaker although you'd feel better if you had one.
Hope you feel better! I think sometimes the clinicians do not realize how scary they sound.
Pacemaker Writer (Jo Ann)
Every Day is an Education ~ ~
by Carolyn65 - 2010-02-05 12:02:37
Suemarie, all of us have been in your position. Without the help of all the good members in the PM Club who have put up with "my" stoopid questions/comments, I would not have made this journey through the implant. recovery and post-worries.
I truely can say I have learned more from the PM members than any educated, certificated medical person who I pay for their sarcastic, low mentality attitude. With over 10,000 members in the PM Club, with their thousands of hours of dealing with PM challenges of their own, I will ask them my questions and get their answers BEFORE I go to my doctor. I will have a better answer than the techs/Dr. give to me.
Please, any time you are feeling doubts, have questions OR just want to talk, please sign in to the PM Club. We will always be here for you. Just take one day at a time ~
Take care and Hang in there ~ Carolyn G. in TEXAS
buzz words
by dwelch - 2010-02-06 01:02:16
It is all about the buzz words and clinical terms.
Hey thanks pacemaker writer for hanging out here, nice to see someone without a pacer but knows about them and has good answers. Maybe there are some doctors trolling around, they probably cannot legally give advice I am guessing, oh well.
Suemarie, there are a lot of terms to learn, dont get too worked up on what they appear to mean on the surface like dependent or 100% dependent or complete block or words like that. It is not a requirement, but it is in your best interest from a health perspective to try to learn enough of the words to communicate with your doctors, ep, techs, and nurses. I dont expect you to become a cardiologist or anything.
if you are only two or three days into this, here is something you may or may not know depending on what you have read/asked, etc. When you go back to the doctors office for pacemaker checkups, one of the tests they will do, or at least one they do on me (complete congenital (from birth) heart block, dual chamber pacer) is they turn off the pacer and watch how my heart reacts. This test feels really really strange, it may feel like someone just sat on your chest or you cant breath, the test is very short, and rest assured they can instantly stop the test and they are watching you (through your ekg) even if their back is turned. Now the doc may choose to tell you that your natural rhythm is this or that, if not just ask. It will make you feel better about that dependent term and the what if my pacer fails fear.
Pacers are just plain reliable, its not a car or a computer that breaks down or has to be rebooted, think about most of us with pacers have a minimum rate of 60 bpm or more, okay lets even say 50bpm. That is 3000 beats per hour, 72000 per day, over 500,000 per week, over 26 million per year. And thats the bare minimum number you can easily add another 50-75% to that. You would have to sleep or veg out round the clock to get that few beats in a year (with a pacer). I know exactly what it feels like both when the pacer is turned off, and what it feels like when the pacer goes into the 65bpm safety mode the few months before it needs to be replaced. I have had pacemakers for 22 years, about 600,000,000 heart beats minimum. My pacers have delivered each and every heart beat asked to deliver.
it is normal if not expected that you wont pick the lingo up right away any more than you remember every single do and dont post-op. One term at a time, one day at a time, if not at this site, you have the whole internet available to answer these questions. I didnt have that luxury for a long while so had to learn 15 minutes at a time once or twice a year during doctor visits.
It is all about the buzz words and clinical terms.
Hey thanks pacemaker writer for hanging out here, nice to see someone without a pacer but knows about them and has good answers. Maybe there are some doctors trolling around, they probably cannot legally give advice I am guessing, oh well.
Suemarie, there are a lot of terms to learn, dont get too worked up on what they appear to mean on the surface like dependent or 100% dependent or complete block or words like that. It is not a requirement, but it is in your best interest from a health perspective to try to learn enough of the words to communicate with your doctors, ep, techs, and nurses. I dont expect you to become a cardiologist or anything.
if you are only two or three days into this, here is something you may or may not know depending on what you have read/asked, etc. When you go back to the doctors office for pacemaker checkups, one of the tests they will do, or at least one they do on me (complete congenital (from birth) heart block, dual chamber pacer) is they turn off the pacer and watch how my heart reacts. This test feels really really strange, it may feel like someone just sat on your chest or you cant breath, the test is very short, and rest assured they can instantly stop the test and they are watching you (through your ekg) even if their back is turned. Now the doc may choose to tell you that your natural rhythm is this or that, if not just ask. It will make you feel better about that dependent term and the what if my pacer fails fear.
Pacers are just plain reliable, its not a car or a computer that breaks down or has to be rebooted, think about most of us with pacers have a minimum rate of 60 bpm or more, okay lets even say 50bpm. That is 3000 beats per hour, 72000 per day, over 500,000 per week, over 26 million per year. And thats the bare minimum number you can easily add another 50-75% to that. You would have to sleep or veg out round the clock to get that few beats in a year (with a pacer). I know exactly what it feels like both when the pacer is turned off, and what it feels like when the pacer goes into the 65bpm safety mode the few months before it needs to be replaced. I have had pacemakers for 22 years, about 600,000,000 heart beats minimum. My pacers have delivered each and every heart beat asked to deliver.
it is normal if not expected that you wont pick the lingo up right away any more than you remember every single do and dont post-op. One term at a time, one day at a time, if not at this site, you have the whole internet available to answer these questions. I didnt have that luxury for a long while so had to learn 15 minutes at a time once or twice a year during doctor visits.
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Anxiety
by paulb - 2010-02-04 10:02:01
I too have alot of anxiety and i am getting my PM wednesday. Im worried about it making my anxieties worse also. My dr prescribed me some mild nerve pills to
take after the surgery and i started going to a therapist. Do you take any anxiety meds or go to a therapist? Both really help. I trying to look at it like this... With the PM we will be much safer as it keeps us going better. You were living without it and now with it your stronger. Try telling your self that. Also iv found humor really helps - "im stronger now with my back up generator" lol hang in there u will be great and im sure u will get use to the PM and forget its even there. Keep us posted on how ur doing. How do u physically feel?