Longest one has lived while pacer dependant?

How long is the longest someone has lived with a pacemaker? And what problems are expected from long term pacing?

From my research, modern implanted artificial pacemakers have only been available for about 35 years (some were available in the 1960s but not very successful) - since the 1970s. I guess I assumed until recently that they have been in use for much longer.

My son is a toddler and got his pacer at birth due to complete heart block (caused by maternal autoantibodies). All the medical professionals have said from the start that he can live a relatively normal, long life with a pacemaker. But now, I am realizing that this can only be an optimistic assumption - that there is no foundation to depend on this, no concrete examples - other than maybe the fact that some other kids paced from birth are now doing well into their 20's. I also have found that there is no regular way to pace a child afflicted with congenital complete heart block - some have dual-chamber rate responsive pacers, some are bi-ventricularly paced, some are single lead ventricularly paced - some have epicardial pacers (abdomen) and some have transvenous(shoulder) even as babies. They tend to have nearly identical heartrates, heart function, cause, and experience. But their pacing experience really goes over a range. I do understand why some doctors feel epicardial/tranvenous placement is better - but there is no general agreement on it.

SO. I really want to know - you won't scare me. I want to know how long someone has lived? How many years/decades? What function problems are most likely, even if rare and unknown? Why might the pacing protocol be so very different for the same exact issues?

Thank you for listening. I have learned so much here. I hope my son will be chiming in here when he is older.

Sterling

9 Comments

My experience

by pacerpacer - 2008-03-10 01:03:15

I have complete congenital heart block which was identified when i was 5 yr old, i lost conciousness 2 times while playing. One month later i got PM. I was also put on few test and doc confirmed that I hv complete heart block at the level of AV node and no branch bundle block so i will hv no problems in future. I always believed that i was given PM by mistake, that believe went when 1 yr ago when even after depletion of battery for more than a year i did not see the doc. Just one day it struc me to find something in internet and i typed complete heart block in google, i was in complete shock when i found how lucky i was to be alive...within few days i had my new PM. Till date i hv never faced any problem even during the 1 yr period without PM. I was keeping regular record of pulse and knew when my PM was gone. But i suppose my ventricals are just too strong and were able to pace at 40-45 ppm without any exception.

I hv completed 25 yrs now. I learnt that slowly pacing can affect left ventrical, but if someone keeps himself fit and do some execise and keep weight under control this situation can be avoided.

All the above msgs are very inspiring. I wish we all beat the life expactancy of normal population.


Thank you!

by slarnerd - 2008-03-10 02:03:25

Thank you for your responses. My son (20 mo) has complete av block, I had always assumed that heart block and av block was the same thing (frank?). My daughter (age 3) has 2nd degree av block. So I am pretty familiar with the condition - though I am still learning and always will be. His atrial rate is about 100 and his ventricular rate is 40-50 bpm. Right now his atrial lead is fractured (probably due to growth) and his ventrical lead is close to being too short (surgery in May to replace generator & leads). So we've already had some minor issues -- but no function problems, thankfully. If that ventricular lead breaks, we may or may not notice a change (lethargy, not eating, blueness). His underlying rate is good enough to not create an immediate emergency - surgery would be within a couple days. He is 100% dependant and has been since 40 hours old and presumably always will be. His heartrate is expected to decrease over time but to what we don't know. Buut his AV block can't get worse, per se. My daughter could progress from 2nd degree block to complete - but is not expected to. She has no symptoms at all.

Susan - I think it takes adults longer to heal and I am sure that it has been scary for you. Thank you for your post - I hope you are feeling better soon. On one hand I am terrified to take my 22 mo old son in for his second pacer surgery and 2 day hospitalization, knowing he won't really understand why he can't eat or why he hurts - aided only by tylenol after the first day, and then restricting his activities. But he has the benefit of avoiding the anticipatory fear, as well as the ability to heal more quickly.

Tracie, Gellia, and pacerpacer - Thank you for your messages. I hope that my son grows to be as confident, well adjusted, and happy as you.

Frank - thanks for responding too. i always read your posts with great interest - you are so knowledgable and explain things very well.

Anyway -- thank you so much. We are certainly so grateful for the life and health that our kids have - we know how very lucky we are. Your positive attitudes and support are invaluable to me.

Sterling

Note of optimism

by Robin Branda - 2008-03-10 04:03:53

just a quick note of optimism. Every year that goes by marks new research into pacemakers. Just imagine how good they'll be in ten, twenty, thirty years as you son grows older. They are even researching ones now that never have to be changed - they run off the body's energy. good luck

robin

Hi Sterling,

by Gellia2 - 2008-03-10 09:03:03

I too had congenital third degree heart block - discovered long before pacemakers were around. My first pacemaker was implanted in 1975 when pacemakers were still relatively new for the general population. I have been totally PM dependent since. Got my first dual pacer in 1982, again when they were first new to the general public. It has now been 33 years of continual right heart pacing with, I must admit, relatively few problems. I've had wires scar over and wires break, and a few episodes of electrical interference that caused a nasty complication called "cross talk", but other than that, my PM has been a blessing.
I recently had my 7th surgery for a battery replacement and this has been the best yet! I plan on another 33 years!
My very best to you and your son.
Gellia

My experience

by Pacing13 - 2008-03-10 09:03:05

Hi Sterling - Not sure I can answer all your questions but I can tell you what I know my from experience.
I have complete gongenital heart block with a dual chamber pacemaker. Mine is and always has been located in my left shoulder. I was 13 years old when I hit the floor in gym class and woke with a hr of 26 beats per min. Pacemaker implanted 4 days later. I started with my pm being on demand( when needed) and at age 28 when having my third implant I started using it 100% of the time. I have lived a normal life and half the time forgetting that my pm is there. I am now 35 and will be having implant #4 within the next couple months. My father also a pm patient and has his dual chamber for 32 years and going strong! He has had implants in stomach and currently in his shoulder pacemaker.

If you have any questions you think I might be able to help with you can send me a Private Message (top left of page under CLUBHOUSE) and I would be happy to try and answer them for you.

Pacing13
Tracie :)

Getting things in perspective

by susanspurs - 2008-03-10 10:03:43

Hi Sterling
I am five weeks into my first pacemaker and things aren't going too well. But reading your posting about your baby son has made me feel guilty. Yes - it is still quite swollen and sore, yes - I am quite breathless and tired but these things pale into insignificance after reading your posting. What a hard question to ask!

My first baby, a daughter, 35 years ago had to go into intensive care when she was born and it was touch and go for the first few weeks. So I can feel a little of the worry you and your family are going through.
Wishing you and your family all the best for the future.
Susan



Life expectancy with a pacer

by ElectricFrank - 2008-03-10 12:03:49

Hi,
As you can see from Gellia's post you can live a long time. There really isn't anything about the pacemaker that should shorten life. Here is a list of things that could affect longevity:
1. The original problem that required a pacer. The pacemaker only works around the problem. It doesn't fix it. If the original problem was a progressive disease then that will limit the outcome, but the pacer can only help.
2. Pacemaker or lead failure. Over life time this is always a possibility and if the heart simply doesn't beat without it then a failure means death in a minute or so. Keep in mind that the term Heart Block is meaningless. It usually, but not alway refers to an AV block which interrupts the main pacing route from atrium to ventricles. This would normally stop the ventricular beat, but there is a "fail safe" mechanism built into the ventricles that will sustain a low HR (usually in the 25-40range). Depending on the individual this will usually sustain consciousness.
3. An otherwise non life threatening failure could result in passing out while involved in an activity where this results in a fatal accident.

As far as failure of the pacer itself, the modern device is quite reliable. It may seem scary to think that our life hangs on the operation of a computer device, but keep in mind all of our lives hang on the operation of the computer in that new automobile, and the airliner we road in last week. In the new jets there is nothing but a computer between the controls in the cockpit and those flippers on the tail
.
Finally my thought fo the day: We are all born with a terminal condition, go into remission, and some day it comes back to get us. It is only a matter of when.

cheers,

frank

Complete Heart Block vs A/V block

by ElectricFrank - 2008-03-12 01:03:32

The problem with Complete Heart Block is that it doesn't describe the problem. I have talked to quite a few people at parties that are scared that their arteries are completely blocked and that their pacemakers are keeping them from having open heart surgery.
I won't let my cardiologist even use the term with me. He tied to scare me with it when he wanted me on statins. He got this worried look on his face and said "you know you have complete heart block". I smiled back and suggested he learn what A/V block is. I told him that heart is quite healthy, that my sinus rhythm is great, and that all I need is my pacer to get the message to my ventricles and all is well. He hasn't brought it up since.
My take is that it is a marketing term used to scare us into compliance with doctors orders.

frank

30 years with complete A/V block

by jfrez - 2014-09-02 03:09:44

just take care about the heart enlargement. When you grow up using a pacemaker, th heart will increase it volume in some areas..

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