No quality of life post pacemaker.

Indication?

by PacerRep - 2018-02-28 08:06:51

What was the reason the pacemaker was implanted? What are you current settings and pacing percentages in the Atrium and Ventricle?

No quality of life post pacemaker.

by DeeDee - 2018-02-28 11:03:47

Thank you for responding.

PM was for sinus brady cardia. Pulse in 40's and sympotomatic.  I will obtain settings today from doc. 

DeeDee

Time to move on

by Gotrhythm - 2018-02-28 15:00:00

Like you I was not a hypochondriac, had rarely been to a doctor and as a result was fairly naive about how medical system in the US worked.

Something is wrong. You know that, and you're not getting better. It may have to do with your pacemaker, or it may not. But your doctor isn't helping.

If there's one thing dealing with a pacemaker has taught me it's that if a doctor doesn't know what the problem is or how to find out, going back to them isn't going to make them any smarter. No blame. Nobody knows everything. But if you have some problem that's unusual or outside the scope of what your doctor is used to treating, another average local cardiologist probably isn't going to know any more. It's my guess that the cardiologist who refused to see you was tacitly admitting it.

That said, a local doctor isn't your only choice. Today, travel is easy. Go to a major medical center, somewhere that rare, unusual or complex problems are regularly seen. Looking at your profile, I would think one associated with the University of Arizona is probably close by, but by plane, Mayo Clinic and other creme de la creme centers are not out of reach.

Ask for a referral or you can also refer yourself. In my experience you'll be seen in about the same amount of time either way.

Hope this helps.

Pacemaker Settings

by KonaLawrence - 2018-03-01 15:01:45

Aloha,

I apologize in advance for such a long message.  I'm certainly not a doctor and your situation is probably very different than mine, but I believe it may be helpful for you to hear about my experience with similar problems.

I agree with Gotrhythm, above, that you need to see a specialist, preferably an Electrophysiologist.  That's a cardiologist who specializes in electrical problems of the heart. You probably also need to see a VERY experienced pacemaker technician.  

I had my pacemaker installed Dec 18, 2017, so I'm very new to this process.  I'm 69 and a very active amateur athlete.  At least I used to be, before the onset of Sinus Node Dysfunction (Sick Sinus Syndrome), which causes low heart rate.  Most of 2017 was very difficult for me.  The last few months I slept a lot and I could hardly do anything other than walking!  

The first few weeks with my new  pacemaker were pretty good.  More energy, more alertness, less fatigue.  I was looking forward to getting back into my daily exercise routine.  I tried to "study up" about pacemaker settings so I could ask for a few little changes.  At 4 weeks I had my first pacemaker "interrogation".  That's where the pacemaker technicial (expert) looks at all the data since the last "interrogation" and decides what if anything needs tweaked.  Since I felt ok and my pacing was good (99% Atrial pacing, 1% Ventricule pacing), I didn't need much.  I asked him to enable the Lower-Rate Night-Time function, reduce the daytime rate from 60 to 55 and increase the maximum rate from 130 to 145.  Nothing too significant.  My progress with my new pacemaker continued to be good.  Two weeks later, running on a treadmill at the gym I fainted and hurt my leg.  I also got scared.  I didn't think that should happen with a pacemaker.  Granted I was pushing myself really hard, apparently too hard.  Back for another check on pacemaker settings.  This time I had a different technicial (who didn't know how to read or change the settings very well), but he did get the Rate-Drop Response function turned on.  Sounded good, but a big mistake.  What followed was two weeks of bad news.  That tech couldn't figure out how to get the Rate-Drop Response function set to work correctly, so he changed a number of other settings.  Including turning off the entire Rate-Response function!  That means that no matter what I did, walk, run, bike, etc. my heart-rate stayed in the 60s!  I was dead tired all the time.  Also sleeping 10-12 hours a night.  I called and easily got another appointment with a VERY experienced pacemaker technician.  (I'm pretty sure the senior techs know there are problems with the inexperienced tech.) 

Anyway, a week ago I saw the senior tech.  He tweaked many things, including turning the Rate Response back on.  (He even asked me why some settings were set by the previous tech.  I had to say "I don't know, I didn't ask for those changes".  He was visibly disturbed about some of the settings.)   I feel like a new person.  I can get on the treadmill and my heart rate is averaging in the 120s, I walk and it's in the 90s, same for everything.  I'm sleeping 7-8 hours and feeling good.  It has really taught me that I am bionic now.  My pacemaker settings are HUGELY important.  It turns out most doctors don't know much at all about pacemaker settings.  They decide what type of pacemaker is best, but don't worry about the 200 or so settings in the software.  Afterall, that's the job of the factory technicians (Medtronic, Biotech, etc.)!  Of course, pacemaker technicians are just like any other kind of service people and different people have different levels of expertise.  Whether remodeling your kitchen, fixing your cellphone or modifying your pacemaker, you need the best available!

I don't know if your problems are pacemaker setting like mine, but be sure to see an experienced technician to have them checked.  AND have them explain to you what the settings are and how they are changing them.  It's your body, it's your paemaker and it's your data.  I think it's very good to find out all you can about all of it.

Ok, that's my rant.  I hope some of it is helpful...

Pacemaker settings

by DeeDee - 2018-03-02 23:15:41

Thank you this was helpful. I am ready to find a  electro physiologist. I am also surprised by all new PM members with similiar problems. This is weird, but there is always something to laugh about.  Since the PM my finger and toe nails are growing rapidly!!?? So something is getting more oxygen.