Refusing the Pacemaker

Doctors

by FitMomma - 2017-06-20 22:20:31

if you really think you don't need it I would go for a 3rd opinion. Do lots of research yourself and read through the posts on this site.

Holding back on the PM

by Michigander - 2017-06-20 23:08:12

Your case sounds just like mine.  I had Bradycardia and a very large number of missed beats every day for 40 years (up to 30,000 per day).  My overnight heart rate was often 30-40 bpm.  It is quite survivable.  Like you, I have exercised at least 5 days a week and have maintained my physical condition.  I still do at age 70.  Possibly because of that, I have never had any physical symptoms of heart trouble.  I, for example, easily maintain normal blood pressure at 30 bpm, and never am mentally impaired or fatigued.

The Holter monitor revealed this year that my 2nd degree AV blockage (Type I) (which I have had for at least 10 years) had become a 2nd degree AV blockage (Type II), which is more dangerous.  Look the two of them up.  My cardiologist strongly recommended a pacer, which I resisted based on my perception of excellent health.  What he showed me was this:  At night (asleep) my heart rate was as low as 23 bpm.  During the day, I had as many as 11 consecutive missed beats, many times a day.  He said it was too many and too dangerous.

He said that I might live until I was ninety with that condition, but there are two problems:  I could experience "sudden death" at night or I could pass out at an inconvenient time without any warning whatsoever.  Examples would be driving a car, falling down stairs, falling from a ladder, or just falling on a hard surface.

So consult another doc.  Look at your own Holter monitor traces.  If your condition is risky, choose wisely; for yourself and others.

How slow is too slow?

by Adagietto - 2017-06-21 00:49:39

I should have either an ICD or an S-ICD.  Doctor's prefer the ICD so I could be paced which would allow me to take beta blockers known to extend life of heart failure patients.  I'd had a forty-something heart rate in the EP's office which is why he ordered the Holter, saying that if it was in the 40's a lot of the time that was "just too dammed slow."  Well I did have one or two readings in the 40's during waking hours but the majority of the time it was over 60.  I think it has slowed a bit more since then.  If it weren't for the defibrillator issue and ejection fraction issues, I'd hold off until I really needed pacing.  Santiago, it's we, the patients, who have to live with the consequences and it is good to learn as much as possible to be able to make the best informed decision.  It sounds like you want to be sure there will be no improvement as part of your information gathering.  Are either of the two doctors you saw wanting you to have this thing ASAP or do they feel a 2-month wait so that you are more comfortable with the idea is reasonable?

How slow is too slow?

by Adagietto - 2017-06-21 01:09:33

Michigander, you've held off a long time, but it's good you have a doctor who took the time to really explain the present facts to you.  It does sound like the time has come.  If you would have just a pacemaker rather than an ICD, they're smaller and not quite as possibly problematical installing.   At 75 I feel good, have no symptoms and can be comfortable in all positions in bed.  It's hard wrapping my head around the fact that my heart failure is progressive and incurable.  There is some parallel with your situation because I'm not presently experiencing symptoms.  With an ICD I'd become more of a "patient," but the handwriting is on the wall.  I am someone who really, really doesn't want to have an ICD implanted (for the pacing) because at present I have both lack of symptoms and pretty good numbers.   But if I'd been shown the very real numbers you have and heard the doctor's explanation (which I believe is quite correct), I'd be asking, "How soon can you do it?"  Wishing you the best.

How slow is too slow?

by Adagietto - 2017-06-21 01:27:56

Michigander, I now see that you have had your pacemaker implanted and have had a few little blips so far and confusion with the monitoring etc.  One of the reasons I'd rather not be hooked into the system....  Hope all will be straightened out soon and that you'll feel very well again.

Borrowed time????

by zawodniak2 - 2017-06-21 19:23:09

At 65 years of age, I passed out unexpectedly and broke a rib.  Obviously, it could have been a lot worse.  I, too had a left bundle branch block and bradycardia, which I never knew.  The cardiologist also told me I should get a pace maker as my chances of another serious episode and even sudden demise were. much higher than normal  I was shocked and requested a electrophysiology test and a holter monitor test to dig deep into my condition.   No positive conclusions were substantiated, other than what I have mentioned.  This obviously alerted me to pay closer attention  to how I felt becaue fatigue and dizziness can creep up and the body tries to adjust and denial sets in as just a normal condition of aging.  I got a second opinion months later when I requested a tilt table test by a very experienced electrophysiologist.  He confirmed what he said was a "Lazy Heart" and said if I did not get a pace maker then, I would most likely be needing it in the future.  Not wanting to roll the dice, especially since I had some stressful situations which come along in driving a 45 foot motorcoach pretty much full time---I said "Let's do it".  He put in a rate responsive pace maker which adjusts my heart rate to my activity level and never lets it go below 60 bpm.  This was 10 years ago and had the original replaced 2 years ago I am glad I made the decision. Mild fatigue, dizziness and anxiety relative to my condition have deminished.  I seriouly hope I help you make the right decision .  Let us know!!!

                                              Good luck,

                                               Rodger

Refusing the Pacemaker

by Santiago - 2017-06-22 12:34:13

Follow-up to my original post: I have decided to wait before getting a pacemaker. My cardiologist has agreed for me to come in for an EKG on August 1, 2017 to see if there has been any change in my second degree AV block. If the follow-up EKG shows any movement to a third degree block, or I have symptoms (fatigue, shortness of breath, chest pain, weakness or fainting) before the 8/1/2017 exam, I will op for the PM implant.

Thank you all for your suggestions, comments, and person experiences with pacemakers and treatments.

too slow

by dwelch - 2017-06-23 02:08:24

We used to think my slow rate was from being athletic, nope complete heart block (being very atheltic may have helped sure).  Was still very athletic after the pacer.  The pacer just gives you a better chance of surviving.  30 years ago now, pacer number 5, probably wouldnt be here otherwise.  The pacer is not going to change your ability to be an avid runner, might make it easier with a better operating heart.

Symptoms are not necessarily required to need one.  Some folks sure, a number of folks symptoms are why they went in and a heart issue is what was found.  For some of the rest of us though, pure accident, one doc hears something, sends you to a cardiologist for an EKG, EKG shows something else, maybe an echo, lather rinse repeat, time for a pacer.

The thing to be worried about is not getting one.  I think the questiions you should be asking unless you already see them in these forums, is to ask the questions related to why you are resisting, where do those feelings come from, what do you think you are going to give up, what is life really like with one, etc.

Note was pre-teen when the EKG showed I had an issue, was 19 when my first one went in, we watched it for a number of years, doc told me not to do the active sports things I was doing, couldnt play soccer unless it was goalie, he must not have understood what BMX racing was like, did get upset that I went on a half centry ride cold turkey (BMXer, worked at a bike store, borrowed a bike and rode a half century.  People in your condition have died from a stunt like that.  Anyway, I/we (parents) had a number of years to grow into the idea, my heart finally got large enough and/or thick enough mucle walls that it was time, and I didnt resist.  Will never know the what if I didnt...

tolerate the EKG's, echos, and a holter here and again, develop a trust with this doc or find another and develop a trust there, when they say it is time....its time.  Between now and then read or ask questions here...

Use your time wisely

by Gotrhythm - 2017-06-23 16:03:28

You said, "Has anyone else gone against the doctor's recommendation of getting an immediate implant, but waited to see if the condition worsens?"

Yes, I did, and it did. :-) I wound up getting an emergency pacemaker.

Once I had the pacemaker, it turned out I needed to know a lot more about them than I did. And it turned out that I could not rely upon medical personal for explanations. If I had it to do over again, even if I knew the outcome, I still might wait. But I would use the intervening time to research everything I could about my condition so that I would be clearer about how the heart's electrical system functions and what exactly a pacemaker does to correct problems. I'd understand that heart rhythm problems do not get get better. I'd have a better understanding of what troubleshooting a pacemaker entails. I would be ready to be an advocate for myself.

Everything I now know about pacemakers I have learned from my own research and the help of the Pacemaker Club.

Refusing the Pacemaker

by Santiago - 2017-08-01 20:42:45

As I mentioned in my 6/22/2017 comment, today (8/1/2017) I visited my cardiologist's office for an EKG to see if my AV block has gotten better or worse. It has gotten better. Instead of a 2nd degree block, I now have a 1st degree AV block. Also, I will not have to go back for another exam for another four months. It still remains a wait-and-see situation. If I develop any symptoms of a severe AV block, like fainting, shortness of breath, chest pain, weakness or fainting, I would definitely be a candidate for a PM. Every since my original diagnosis of an irregular heart beat in June 2017, I have not experienced any of those symptoms.