Pacemaker programming

Hi everyone! I'm 66 and had a Biotronik bi-ventricular ICD pacemaker implanted on 11-3. I have non-ischemic severe heart failure and a left bundle branch block causing my ventricles to contract unevenly. I read on the Mayo Clinic site this pacemaker is programmed by a rep of the pacemaker manufacturer. I never saw one, and when I asked they said it had been programmed during the procedure. They discharged me the same day, and I was re-admitted through  the emergency room an hour later because of severe dizziness and nausea. The next morning a rep from Biotronik came to my room and programmed my pacemaker 4 times until the cardiologist on call was satisfied. I can't help but think they discharged me hours after the procedure with incomplete or no programming. This is a very scary thing. 


7 Comments

Severe heart failure

by Gemita - 2022-11-07 11:58:29

Jessie, first of all if you are in any way dissatisfied with the treatment you received, you should write to the hospital for a full explanation of what might have happened and expressing your genuine concerns.

The problem is you do have severe heart failure, and any intervention like a pacemaker implant can take a heavy toll on your health, so it is hard to say whether your symptoms were a direct result of anything they did or didn’t do.  I would think it highly unlikely with your severe heart condition that they would have discharged you without carrying out certain safety checks although I can believe the settings you were sent home with may not have been fine tuned for you.  Do you feel better now?  It may take a while for everything to settle down and there may be more fine tuning of your settings needed in the future too.

I see you have an ICD, presumably for your heart failure and/or a dangerous arrhythmia.  Both heart failure and an arrhythmia may cause dizziness and nausea and other symptoms.  I am glad you have a bi ventricular ICD pacemaker to protect you and I hope your heart failure improves.  I wish you well  

You can extract all of the operation notes via a formal access request

by crustyg - 2022-11-07 12:47:56

If I understand you correctly, you're thinking that either your device wasn't programmed at all, or not programmed correctly.

You can determine the truth by making a formal request for your medical records which will include all operation notes.  If your device was programmed then a) someone will have made a note to that effect, and b) have produced some sort of documentation and lodged it in your medical/operation notes about the post-programming status of your device.  If there's nothing there then your unhappy thought will be proved correct.

More and more patients request their health records, and most civilised countries have legislated to enable this - this covers all records, devices, PM/ICD settings etc.  It doesn't necessarily mean that you're reaching for your attorney (although some docs might feel otherwise): for many of us, knowledge aids understanding aids acceptance.

I can't advise you, but for folk with severe heart failure you may feel that you have better/more productive uses for your time.  It depends on how angry or frightened you are.  I don't envy you the decision, but if you are losing or have lost your trust in your heart team, you need to move on ASAP.

 

Thank you

by jessiecostanza@gmail.com - 2022-11-07 13:13:20

Thank you both for your responses. There's more to the story. It was too late in the day when I was discharged after surgery to get a prescription for pain meds filled so they called in a prescription to the only pharmacy open in the area, but they called it in wrong and the pharmacy refused to fill it.  I went back to the hospital in a panic, had this dizzy/nausea spell in the hospital and was re-admitted. I was discharged the next day with a written precription for a drug not even available at any pharmacy but the one who refused to fill it the day before. The only other time I've experienced such dizziness and nausea was almost 3 years ago  when I had a non-ischemic heart attack. I've been very stable on medication, just no energy. I don't currently have any lethal arrhythmias but the potential for them is there; it was implanted more for the ventricular resynchronization. No, I don't feel better.  I've had more dizziness in the last few days than ever in my life.   

Dizzy Spells

by Mad Hatter - 2022-11-07 15:18:17

I have a Biotronik, not the same issues or model as you, but have had dizzy spells.  Just posted this on JSNE's post:

I am three months in on a Biotronik Edora 8 DR-T dual lead and had a follow-up 11/1/23 which had been rescheduled due to a conflict in the EP's schedule.  I had adjusted well to the pm except for having dizzy spells on rising from any position with my head down (pulling weeds, looking under a counter, kneeling down to pet a dog, etc.).  I mentioned this to the pm tech on my first check a week post pm but she said she didn't see any events and I didn't see the EP on that visit.  Now three months in the EP says getting the settings right is like tuning a Stradivarius and may take some back and forth with the tech.  The tech then consults with the manufacturer rep and changes my settings from DDD-CLS to DDDR.  She said the former was more for older people who are not very active.  This was interesting because I had told her on that first visit that I am an avid runner and wanted to get back to running as quickly as possible.  Interestingly, the former settings did not affect my running as I completed a 10K a week ago with no issues.  I have no idea what the settings mean, but the new setting seems to have worked with the dizzy spells.  I've been very disappointed with my EP and tech in terms explaining what the pm is doing and the impact of lifestyle on my settings.

I see you are close to my age and active, so I mention this to encourage you to be more persistent than I was about asking questions and getting your settings adjusted.  Also, there is a Biotronik app that apparently lets you monitor some information your pm is recording, but I have not gotten it to work.  After registering I get an error that it can't communicate with the server.  The Biotronik people tell me it's something in my phone and they can't help me with it.  Very frustrating.  But I'd be interested to know if you or anyone else has success using the app.

Good luck and God bless.

You need a good heart failure team to do well

by Gemita - 2022-11-08 02:02:42

Jessie, it may take some time to notice any improvements with resynchronisation therapy (biventricular pacemaker) so don’t expect overnight results otherwise you might get disappointed.  It may take up to 3 months to notice results and even longer in some cases.  Unfortunately it has to be said some patients do not benefit from this therapy alone and will still need medication and other cardiac support to help with their symptoms.  

With heart failure, you should be under a heart failure care team who can support and advise you on meds, pacing difficulties, any troublesome symptoms you are getting and answer all your concerns.  They can refer you to other support teams, if required, like cardiac rehab, to help you pace yourself and manage your daily activities better. If you are not under a care team, I would respectfully ask about this.  My sister who was diagnosed with heart failure (ejection fraction initially found to be 16%) is now doing much better and sees a heart failure nurse frequently.

I would try not to focus on negative things since you need all your energy to stay well by the sound of things and you may well succeed.  You look lovely in your pic by the way.  

Regarding your increased dizziness, I would definitely let your doctors know about this and get a few additional checks.   Are you keeping well hydrated?  After an implant, we may experience some unwanted heart rhythm disturbances and these can lead to dizzy spells.  I did for a few months until my heart got used to pacing and the implant trauma.

Thank you for completing your Bio and Interests.  That is helpful. 

Dizzy spells

by Teegee - 2022-11-08 10:23:48

Very informative comment  MAD HATTTER and GEMITA.I recently experienced dizzy spells too. Had the pm settings/ mode changed.

Best wishes !

( I'm new to the PM Club. Just getting the hang of 'Comment making')

Adjusting

by jessiecostanza@gmail.com - 2022-11-09 23:47:02

Thank you so much Mad Hatter, Gemita, and TeeGee! Everything all of you have said makes so much sense. Since my original posts things are changing on a daily basis. Now that the initial pain has turned to mild discomfort and soreness, I'm able to walk up 10 stairs without being winded at all. Gemita, you are so right. It feels sometimes like my heart is rebelling against the pacemaker. I was kinda proud that I had removed many of the stressers that would cause arrhythmias, and had very few PVC's. I do believe our hearts have to adjust and "learn" to play nice with the invader!  Fast movements, getting up too fast, even standing over the stove too long getting a little warm  seems to trigger dizziness and some ectopy but it doesn't last  long.  

Hang in there TeeGee, it appears dizziness is common, and knowing that makes it way easier to deal with if your in good medical hands. Gemita, I don't have a "care team" per se; I'm a patient at Piedmont Heart Institute in Atlanta that is part of Piedmont Hospital. I know I'm in for a lot of follow up visits which is fine with me.   . 

Have any of you ever felt like your pacemaker might be set too high? I know not everyone's being paced 100% of the time like mine, but I can be sitting still and all of a sudden I feel like I'm having a hot flash; I start sweating and fanning and it just feels like they've set the "resting" rate too high. I have an appointment in 5 days with my surgeon and yes Mad Hatter, I have a lot of questions about the programming.  I actually analyzed Holter monitors for 20 years and know quite a bit about pacemakers up till the mid 90's, and although the technology is light years ahead, they still basically operate the same. I have no knowledge of the "new" pacemakers and really want to understand what "makes them tick" because I feel like it will make the adjustment easier.

Then there's the meds I'm sure we're all on. I'm on Lasix, metoprolol, entresto; all cause dizziness. I've completely adjusted to the medication induced dizziness, I suppose the same principle applies to a new pacemaker.   

Thank all of you for responding! It really does help to ease some of the anxiety. Just knowing there are many of us out there sharing the same experiences. Stay well my friends!!!

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The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.