pacemaker

Have a new pacemaker as of last week. I have to admit I'm a bit intimidated and uncomfortable knowing that my heart relies on this tiny machine to function. I was in A-flutter and A-fib. medication no longer worked and that that had worked in the past was too damaging. SO- here I am, new to this world.

I don't know what to expect, what is normal, or abnormal. I have read the book twice and still have no peace of mind.

This type of anxiety is something I have not had before. I normally just take things in stride and go from there.

Any advice, information, or support would be most welcome and thankfully received. 


6 Comments

A whole bunch of info for you

by Theknotguy - 2019-11-11 14:36:00

Welcome to the club you didn't want to join.  Now to move forward.  

Yep, know all about the afib and aflutter.  Have them both.  Medications didn't work right and I woke up in the hospital after a six day coma.  Glad you didn't have to go that way.  

What they can do for me now is to give me medications that would slow down my heart below the survivable level or even stop the heart, then use the pacemaker to bring my heart up to a "normal" heartbeat range.  Called rate control.  There is rhythm control but that didn't work for me.  So there are two questions to ask your cardiologist/EP - are you on rate control? I assume rhythm control didn't work for you either.  But it's a question to ask.

Second thing, I have a Medtronic.  I have two programs running that work with afib.  One is APP - Atrial Preference Pacing.  Second is Minerva.  APP works about 10% of the time.  Minerva works about 80% of the time.  The pacemaker watches continually.  If I go into afib it will kick in one program or the other. APP raises my heart rate and that sometimes makes the afib stop.  Like I said, works about 10% of the time.  If APP doesn't work, Minerva kicks in.  It will change my pacing and pace me out of afib.  Works about 80% of the time.  The other 10% of the time I'm on my own.  So another question for your cardiologist/EP is if your Biotronic has something like my programs?  If not, what do they have?  Since my pacemaker is six years old, these programs may be out of date and not used anymore.  So don't get excited if they say your pacemaker doesn't have the ability to run the programs.  Besides, there isn't a conclusive finding that the programs help.  Although I would argue that I feel a lot better.  The funny thing is I'll feel one program kick in, then if it doesn't work I'll feel the other kick in.  You'll sometimes hear me walking down the hall muttering, "Would you just make up your mind!!!"

Another thing my EP did was to have me take over-the-counter Magnesium supplement tablets.  I think it's standard 50mg tablets.  They seem to work for me.  I don't have as many noticeable sessions of afib as I did before.  So it's another question for your cardiologist/EP.  Does he know of using magnesium?   Does he know if it helps?  

I'm still taking afib medications.  They do help and I've successfully held off needing an ablation for six years.  It still may be in the offing.  

Critics of the Medtronic system say the afib programs don't do anything to eliminate afib.  So there's no need to use them.  I won't argue their findings, but I do feel a lot better because between the medications and the programs I feel afib free although that isn't the case.  I run about 40% being in afib but the programs kick in so fast I don't feel it.  

I think it was nine months before I finally got out of the car and walked across the parking lot without thinking about my pacemaker.  It was about a year before I finally settled into accepting the fact my pacemaker was going to be there when I needed it.  So your anxiety is normal for a newbie.  It just takes time to get accustomed to the new reality.  

I'm more technically oriented so the technical side doesn't bother me.  Another thing for me was to obtain copies of my pacemaker readings.  Can't read everything on them but they do give some useful information my EP doesn't have time to discuss.  So, for me, getting my EP reading printouts is a great help.  

Last, I can do everything I did before I got my pacemaker.  Actually I can do more because I now have a strong heart beat.  I lead a "normal" life.  The pacemaker isn't a hindrance, it's a help.  Did run into one issue where I had increased my exercise and my pacemaker was set too low.  So I had to have the EP change some settings on my pacemaker to keep up with the demand.  But that's the only problem I've had.  

I hope your adjustment goes well and you settle into your new life quickly.  

pacemaker

by nana judy - 2019-11-11 14:36:43

Thank You!

DON'T BE ANXIOUS

by Gemita - 2019-11-11 15:10:49

Hello Nana Judy,

Both hubby and I have pacemakers and we have come to love our little friend.  I am no pacemaker technician but I believe they are incredibly safe today and if we have a few hiccups along the way, they are usually fixed easily by small adjustments to our pacemaker settings. It may take time to ensure that our settings are right for us but I would be patient and allow your heart to find its feet before changing anything immediately.  

What I would say is keep up a good dialogue with your pacemaker clinic and doctors and get them on your side.  Let them know your concerns and hopefully they will allay your fears and explain things to you.  Understanding our health conditions and speaking up when we need to  are vital to get the best from our treatment.  Doctors like their patients to take personal responsibility for their own health and to be "partners" in decision making on any treatment they receive.

I too suffer from Atrial Flutter and Fibrillation and several other arrhythmias.  They really impact negatively on my life.  I may have a pulmonary vein isolation ablation in the future but for the moment my little pacemaker is helping to pace me out of many of my episodes, or at least episodes are no longer so long lasting or frequent.  My Electrophysiologist has suggested an AV Node ablation at some stage in my future because of the nature of my AF.  Did you have an AV Node ablation Nana Judy ?  Do you know whether you have a single or dual lead pacemaker ?  Mine is a dual lead.  There is so much to learn about pacemakers.  I have just asked for a copy of my last pacemaker check so that I can see for myself what my heart is doing, or at least learn what all the technical details mean.  I expect I will need the help from this forum !!

Are you still taking any medication ?  I was able to stop (or lower the dose) of some of my meds after pacemaker implant (and so has my husband), so that is already a great advantage.

I see you are a great grandparent too.  Wonderful achievement.  We have 6 grand children and one great grandchild.  Good luck with your new friend and please dont worry.  You will be fine 

Bio - Hmm

by AgentX86 - 2019-11-11 21:53:53

I was born in 1952 also (and live in GA) but I'm not 70.  We're kinda slow in our family.  Our grandaughter is only four, so no great-grandchildren yet. ;-)

I've had the works with Afib, from cardioversions (lost count), to a full Cox Maze (on top of a 3xCABG), to three ablations for Aflutter (caused by the Maze procedure), to drugs on drugs, on more drugs.  All failed and all caused other issues (thyroid, kidney, sinus node dysfunction).  My EP had been discussing an AV node ablation for some time when I started haing increasingly long asystoles.  Since I needed a PM anyway, an AV ablation wasn't such a large leap.  I got mine in February of '18.

You don't say much about why you have a PM but it's very unlikely to be fatal if your PM just stopped (and it won't).  OTOH, your PM will most likely make your life a whole lot better with minimal, if any, interference in your daily life.

Welcome to the group and you will get better quickly and before long, even forget you have it for long periods.

 

pacemaker

by nana judy - 2019-11-12 12:12:16

Thank you all for your responses. I did have the AV node ablation at the same time my pacemaker was inserted. My heart problems began in the early nineties. I had CABGx5 in 20002. I have a mitral valve clip. It does the job and did not require surgery; only a cardiac cath. This month I had to have a stent because of a blockage. Followed by my pacemaker. I am feeling stronger but a long way from feeling great. After 17 years having to have just 1 stent was considered a good outcome. My family history is riddled with heart disease and related problems so all this is no surprise. I am just really glad that medicine has advanced as it has and continues to do so.   

AV node ablation

by AgentX86 - 2019-11-12 13:32:15

Yes, this additional information makes much more sense. My family history is similar, both sides. "Glad that medicine has advanced...". Amen, and may it continue that advancement.

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