Diaphragm Pacing

With pacemakers, some things you learn to live with....

by Grateful Heart - 2017-08-10 12:04:14

...and some you don't.  That needs to be fixed.  Have they taken X-Rays of your leads and device to see if the lead moved? 

If lowering the voltage hasn't helped they may have to do a lead revision.  I had a revision about 16 months after my device was implanted.  They will cap off the lead and replace it with a new one.  You will have the same precautions at first until the lead imbeds.  It's not very common but it does happen.  You will feel better once this is fixed. 

Grateful Heart   

Diaphragm Pacing

by Many Blessings - 2017-08-11 00:25:49

Hi Heartbeats,

I too, had diaphragm pacing when I first had mine put in. Luckily, the PM rep was able to fix it before I left the hospital. I was warned I might have to learn to live with it if it ever came back, but luckily, turning down one of the leads worked for me.  It did take a couple tries, but they were able to get it to stop.  I had a couple of episodes where it happened again, but it never stayed.  Hopefully, yours will get better too.  I'd ask your PM rep again, if there is anything else they can do, to try to fix it.  Good luck! 

Thanks

by Heartbeats - 2017-08-11 05:23:57

Thanks to the both of you. I'm going TI anwser both of you in the same message. 

They never have taken a X-ray of my pacemaker and leads. I don't think they want to do a lead revision. I have problems with my pacemaker since the day I got it (almost 2 years ago). It works the opposite way; so at rest it can go pacing to the higest rate; 140 and during exercise it will stay at my lowest rate; 80. They even had Biotronik coming from Berlin to try to fix that, but they couldn't and told me I needed to live with it. They also told me that it was better not to exercize; only slow walking for me. If they say that I need to live with this pacemaker that doesn't work correctly I will think they will say the same about the diaphragm pacing..

Mine never did it after placement. I have mine for 2 years now and this issue is something of the last 0,5-1 year. So they can also turn off the lead? Is this possible too if you are paced 100% in the atrium and 100% in the ventricle? (they removed my sinusnode, burned the atrial rhythm, removed the AV-node and the his Bundle). I was told the diaphragm pacing is propably caused by the atrial lead. Is it harmfull to turn off that lead if you need it?   (I don't want to risk dropping more in heartfunction)

I have my appointment today, so I'll update you guys tonight.  

Defective Device?

by Grateful Heart - 2017-08-11 09:42:29

Apparently, it is not something that can be corrected with progamming, as you have tried that with the tech from Berlin.  You should not have to live with a defective device that works backwards.    

If you need to be paced 100% with both leads, then turning one off is not a solution and obviously harmful to your particular needs.  

None of this sounds right.  I don't know the health care system in the Netherlands but you need someone to advocate for you, possibly within the medical profession.  Would you buy a refrigerator that doesn't work but keep it anyway?  This is your heart and safety.

It appears you have a device problem and then maybe a lead problem.  

I hope you get some help today.  You need some answers and not to be told to "live with it".

Grateful Heart   

Lead Turned Off

by Many Blessings - 2017-08-11 09:52:31

Wow! Your's is a totally different situation than mine, so I'm not sure what they can do as far as shutting off one of your leads, or if that would even help, since you have other things going on with your PM. It sounds to me too, that you need a new PM, not just a setting change. Even if they can turn down or shut off the lead causing your diaphragm to pace, you have way bigger problems than that.  Why won't they change it out, did they say? That is not okay!  Is it an insurance issue? Or, does the PM company just refuse to do it? 

As for your leads, I'm 100% dependent as well, and have 3 leads. I know there is one of mine that can be shut off, but there is one that absolutely cannot be shut off (escape rate is too low). I'm not sure about the third.

The one that was causing my diaphragm to pace, was only turned down, not shut off.  I have another lead that they had trouble with during placement (due to over scarring from previous open heart surgeries). They anticipated trouble with that lead, and told me if I started having problems with that one, they could turn it off, but I would feel horrible. After an AV Node like both of us have had, you cannot shut off the lead that is working in place of the AV Node. I've heard some people here say you can, depending on what your escape rate is, but for me, I cannot.  

I'm anxious to hear what they have to say after your appointment today.  You have a very unique situation.  I haven't heard of the reversing rate problem before. I'm so sorry you have to live with that. Hopefully, others out here can help give you some advice on where to turn to get help so you can force the company to change that out for you!  

They lowered it even mor

by Heartbeats - 2017-08-11 12:00:17

Hi guys! I'm back from my appointment. They lowered the voltage even more. It's now set at 1,0 V. They tested how low they could go and I believe they said that at 0,6 V my pacemaker wouldn't pace my atrium anymore. In my mind I'm thinking About the safety, aren't we too low since it was a 2,4 V at first.

We aren't sure if it's solved now, because each time they changed the Voltage it stayed away for a few weeks. 

Since Biotronik told me that I had to deal with the way it is now (the opposite working rate respons) they leave it this way. I tell them everything that is races when i'm at rest and doesn't do anything when i need it. They always end up saying; I'm sorry. I guess that they don't want to change it because they don't know which pacemaker would work for me and because of the risks at complications. Maybe it also has something to do with my age? I don't exactly know their reasons. They just keep saying that I have to deal with it. 

I wish I could turn back the time, than I would never agreed with getting me  pacemaker dependent. 

I do have a second opinion with another hospital, I don't have the date yet. But I hope they think the same About this situation as you guys. I'm young and want to live a normal life, had to stop with my study because it was too hard physically. 

Second Opinion is good

by Grateful Heart - 2017-08-11 16:19:22

Tell them EXACTLY what you told us and bring medical records if you can.

Also, let them know it is interfering with everyday life and studies.

Bring someone with you if possible to hear things you may miss.  Write down your questions in advance, it's easy to forget important concerns at the doctors appointments.

Grateful Heart

Good Job!

by Many Blessings - 2017-08-11 23:30:29

Hopefully, turning down the voltage again, will work for good this time! It makes a huge difference, doesn't it? 

As for the actual PM reverse rate issue, I'm so excited for you to get your second opinion! Like Grateful Heart said, take someone with you, and make sure to write down all of your questions before you go.  That way, you won't get distracted by what they may say, and forget one or two things. Starting right now, write down everything you can think of, and let them know how much this is negatively affecting your life.  Let them know this isn't just a minor inconvenience, this is truly affecting your daily routines, studies, and nightly sleep patterns, which can't be healthy.  If possible, get a copy of the PM interrogation printout from your appointment today to take with you, just in case they see something that wasn't caught or mentioned before. 

I wish you the very, very best of luck!  I really hope and pray they figure out some way to help you, even if you need a new PM. I really think they will!  You will feel so much better when all of this is over!  I can't wait to hear back from you!