QOL Decision re pacemaker

You might be amazed...

by Pacemaker_Sally - 2019-12-21 15:55:24

I couldn't tell from your post if they are proposing a single or dual lead pacemaker. 

For most people, the procedure is not a big deal. Implanting a single lead pacemaker is more straightforward than a dual lead pm. 

I am 56 and have had my dual lead Medtronic pm now for 8 weeks and am amazed at how much more energy I have.

The effects of arrhythmia can become gradually worse over time. In my case, it just felt like I was "getting old and slowing down". It is life changing to have enough heartbeats in a day!

Making a choice

by Bean - 2019-12-21 17:54:55

Thank-you Sally - that is a good description of what is going on. Also, even though I am a morning person, I am not as bright eyed these days! I was not very explicit except for the one question, Swangirl. Any feedback as to how folks made a decision to pace or not, in the case it was not immediate necessary would be appreciated. Perhaps I needlessly fear there is a downside I don't know about! I am hoping I have a response like Sally has had. One concern I have is about the trades required to be able to enjoy higher activity rates such as working out or hiking on uneven terrain (both up and down) with an accelerometer based pacer. I believe it was Tracey_E who commented that she had to trade being out of breath climbing stairs for being able to have vigorous activity levels. I do not understand the settings well enough to understand this trade, and would appreciate an explanation. I am trying to learn enough to ask good questions when I see my EP, and do not know the specific model he has in mind yet.

_Not just QOL

by Graham M - 2019-12-21 18:24:27

I am only four months post PM implantation for Type 2 AV block, but my echocardiogram showed a mild aortic regurgitation and supranormal LV function, so there seems to be something wrong with my aortic valve, but the cardiologists did not seem think it was a major problem.

Like you, I am active, but not sporty and I have to agree with Pacemaker_Sally in saying that you might be amazed.  My QOL is much better than it was 4 months ago, but I am also aware that my PM is keeping me alive.  It's not just a matter of QOL, it's a matter of life and death.

Sorry to sound morbid, but that's the way it is with heart disease and I am very happy to be kept alive by my little electronic friend.

Graham.

Thanks for encouragement

by Bean - 2019-12-21 19:59:37

In general I actually feel grateful for the a congenital goofiness because I am unable to take my health for granted and have come to enjoy taking the best care I can of it. At the end of the day I am increasingly finding I am healthier and able to do more than folks who are able to slide into taking their well being as a given. Still, transitioning from years of the various imaging routines into new issues popping up (frequently as of late!) and actual procedures is taking a little time to adjust. The ethos of my CV practice is very much to get their patients back to their lives at their full potential, and to involve them with the choices. Still, I don't see other patients and am glad to have found this helpful group. I already feel the reality that there are plenty of folks doing well with a PM.

What PM did for me

by KonaLawrence - 2019-12-22 02:57:26

Aloha Bean,

I noticed that you mentioned that you had an ablation for afib in August this year.  I haven't had an ablation, but I often read that it may take 6+ months to completely heal.  If your heart is still healing I think that might affect your QOL decision.

About a PM.  I used to have a resting heart rate of about 45.  I've had diagnosed afib for 10+ years and it's well controlled by flecainide.  I developed SSS about 3 years ago.  Daytime resting heart rate mid-30s, night-time mid-20s and 3-5 second pauses from an intermitent LBB (block).  Got a Medtronics PM 2 years ago.  Immediately I had more energy for everything routine, like just walking around the house.  During the first 6 months, with the help of the PM my Sinus Node decided to quit completely so I became 100% PM dependent. I also became chronotropic incompetent.  So I needed the PM to stay alive and I needed it to accelerate my heart rate when I needed acceleration.     Right "out of the box" PMs seem to be set to keep you happy as long as you aren't to active.  Maybe play some golf once a week.  I am a 71 year old competetive canoe racer, an amateur athelete. The standard settings weren't good enough for me to have a hard 1+ hour workout every day. 

Instead of the "standard" annual adjustment to my PM settings, I asked and got 8 adjustment appointments in the first 9 months.  I finally got the settings so I can compete.  During a routine practice I can workout for an hour (paddling) and keep my average heartrate in the 130s.  In a race I can maintain it in the mid-140s.  That's great for me!  Partly this is because my PM is set to the highest sensitivity to movement which is great for working out.  When I just sit and watch TV, no movement, it drops to my set minimum 55 and if I get up suddenly I'm a little dizzy.  Just walking around the house my heart rate goes into the 90s!  But, it's all ok since I can still maintain my exercise routine and racing.  It is certainly not as good as the original equipment, but it keeps me alive.  Whatever your exercise routine I expect the PM could be set to make you happy. 

Good Luck, Lawrence

PM Benefits

by Bean - 2019-12-22 06:09:45

Hey Lawrence,

You are right about the ablation. I feel as though I am past the post-ablation  tiredness but realize that the aFib is not 'cured'. Just thankful I have not seen a return so far since in my case it really dumps me physically and leaves me very foggy headed. I am simply not a candidate for beta blockers. I was presented with the option of rhythm drugs plus a pacemaker to manage my long QT interval (basically low heart rate). For various reasons, I find myself somewhat adverse to taking additional drugs, so I took the ablation route. I have been instructed in how to use flecainide while traveling should it be needed. 
      I appreciate your description of your process. I am getting the impression that I am progressing down the path of a less robust electrical system. It has been confusing because I wonder if it's aging or heart issues that can be helped. Now I am clearly told I am capable of more than my electrical system is providing, but the PM is not required at this moment if I am ok with my status. I will ask for an honest judgement of my prognosis as I might as well try for better now if a PM is coming fairly soon anyway.

       I really enjoy getting on the river kayaking though I don't race or even aspire to the type of kayaking I used to do. My hour plus workout is important to me because my other active times do not provide the continuos aerobic conditions that I find so helpful. Lately I have to limit my activities if I want the energy to do the workout and my heart rate has dropped during the workouts even though I am breathing hard. I am limited by how lightheaded I am willing to be. I am a retired physicist but still am hands on the farm so can't just elimate my other activities in favor of a workout without impacting my husband which is already happening. (Don't know how we ever managed demanding jobs plus the farm.) The generous folks on this forum are helping me realize that I am fortunate to have a gentle path into a PM, but that I don't have to lose health unnecessarily before choosing to go ahead. I now feel confident that if you (and others here) have found suitable settings for being active, so can I. Understanding more re how PMs work is next!  Thank-you.

A Fiss-a-cist huh?

by KonaLawrence - 2019-12-23 02:36:57

Hi Bean,

Fiss-icks!  Yikes.  My original BS was in Math & Physics.  I taught at university level for a few years, then turned to the "dark side"...software.  Spent my career in Silly-con valley.  Anyway, I might guess that like me you have a bit of the engineer mentality and want to know how things work.  I certainly did on my PM.  I went to the Medtronics website and downloaded the manual for my PM.  200 pages, but the section on rate response (speeding up your pulse) was only 10 pages or so and very helpful.  I understood the options available to the techs when they were tuning my PM and was able to speak their language....helped a lot.

manuals.medtronic.com/content/dam/emanuals/crdm/CONTRIB_244793.pdf

You also mention your rate sometimes dropping into the mid-30s during light exercise.  That's what happened to me.  If your rate is into the 30s during the day, it may be in the 20s at night.  That's potentially dangerous.  If you haven't already worn a Holter Monitor, I suggest you ask for one.  It's a 3-lead EKG you wear for 2-3 days (yes all day long).  You stick the three wires to your front and put a little box on your waist.  When an "event" happens you push the button and it saves all the data.  That will give your cardiologist more information than is possible during a short office visit. 

Your situation is different than mine, but I put off the PM for way, way too long.  Trying to convince myself that my problems were due to age and over exerction.  I figured that If I just cut back a bit I would be ok....wrong! 

I felt way, way better almost immediately after getting my PM.  It's not just a slow pulse and shortness of breath.  If your heart rate is 10-20% slow 24 hrs/day that means all your organs, including your brain are getting 10-20% less oxygen than they need!  And our 3 lb. brain uses 20% of the entire body's oxygen.   I felt much more alert and just "smarter" after I got my PM. 

Good Luck, Lawrence