Introduction

If it's any consolation...

by Theknotguy - 2019-09-10 18:25:41

If it's any consolation it's taken me six years and I still don't understand all the settings.  That's why the EP's get paid the big bucks.  And I just found out there were differences between what I thought my settings were and what they actually were.  Nothing bad, just a lot of technical details that were different from what I thought they were.  There are also settings that won't make sense even when they do explain them to you.  

You can, of course, ask your EP - if you're working with an EP.  Whenever I go for an appointment I write down questions ahead of time and make sure I stick to the script when I'm there.  If I don't I'll get distracted and go off on a tangent.  Then after I walk out of the office I'll wish I did ask the questions.  

If you have a good pacemaker tech, they can be a source of good information too.  I always ask for a report of what they found about my pacemaker is read.   I don't understand everything on the report but I do get some good information and I always have the report to refer to in the future.  

Some people say they've gotten good information from their pacemaker company website.  Most of the answers I've gotten have been, "Ask you EP." And, of course, that doesn't help much.

Another area of good information is this forum.  

The main thing is if you are feeling good and are leading the life you'd like to lead.  If so, you're in good shape.  If not, start calling your doctor's office.  

For me, I was able to do what I wanted and felt good.  Then after six years I started running out of breath after walking down a 950 foot hall.  Was also running out of air while mowing the lawn.  So I called the doctor's office and said, "Hey! Something isn't right here."  They did some tests and determined I needed some pacemaker tweaking.  That's when I found out some settings weren't what I thought they were.   But they made the changes and I feel a lot better.  

After four weeks you can start doing exercise.  You really need to take it easy at first and listen to your body.  Don't push it too hard at first.  There is some additional healing that goes on under the skin and you need to make sure you don't push it too hard.  However when you finish your exercise you should feel tired and not hurt.  If you hurt, that means you have to back it off for a little longer.  

I had a lot of trauma before I got my pacemaker so it was nine months before I could even think of doing any exercise.  I volunteer at a charity woodshop so I toss around a lot of wood.  I'd be OK while I was working but the next day it would usually feel like someone had wrapped my pacemaker with sandpaper and had scrubbed it around in my shoulder.  Now, at six years out I can do the exercise I want.  

Hope this helps.  You can have a good life post pacemaker.  I hope you have a good recovery  

Welcome to the group

by AgentX86 - 2019-09-11 09:03:56

Your new pacemaker will take care of your SSS easily enough but it's unlikely to help the Afib at all. It would be good to understand more about you. Managing Afib can be a real problem. Afib, itself, won't kill you but it can make you miserable.  Some treatments can be even worse. Learn as much as you can so you can direct your medical team. You really have to take charge.

A lot of us have been in your shoes for some time. For the Afib, you should also check out stopafeb.org. There are a lot of really knowledgeable people over there.

What you need to know

by Gotrhythm - 2019-09-11 13:07:27

If you even know your pacemaker has "settings" you're ahead of the game. That's more than I understood, when, like you, I got a pacemaker seemingly out of the blue.

Here's what you need to do about settings. When you have an interrogation, ask for a print out. The settings will be shown. There will be a lot you won't understand, but some of it you will, and someone here will help you with any questions.

Don't take no for an answer. Gently insist they give it to you. If nothing else, asking for the printout puts the doc on notice that you do not intend to be a passive patient. Be aware that settings are arrived at by guesswork. Educated guesswork, but sitll... Your pacemaker team may need input from you to get the best settings for your best quality of life.

Also, go ahead and learn all you can about how the heart's electrical system works. When I was at your stage, I'm not sure I understood that the "plumbing" and the electrical system were two different things. You can have problems with one but not the other, or both. 

A written explanation of how all those chambers and valves and veins and arteries work just confuses me, but I have found Youtube videos that show animations of the heart's workings, both plumbing and electrical that I can understand.

Exercise. I don't know much about afib, and there might be other reasons not to exercise, but there's no reason to think just having a pacemaker limits you at all. People with pacemakers do every sort of exercise, some even compete. 

Welcome to the club.

Welcome to the club

by CyborgMike - 2019-09-11 23:58:11

Heidi,

Welcome to the club. I've also got a dual lead St. Jude. SSS and an arythmia (not Afib). You can choose to be as active or passive a patient, as is right for you. A lot depends on your lifestyle, your goals, and how engaged you want to be. Since you are young(er), I'd encourage you to learn as much as you can, get the tuning right for your lifestyle, but then forget about it as much as possible. In a short time it will fade into the background of your life. They are wonderful devices. 

Are you on any meds for the Afib?  I'd encourage you to learn about some of the basic settings like rate response, min/max hr settings, sleep setting, and ask your doc if you are just pacing on top (sinus pacing) or also on the bottom (v pacing). A high % of v pacing is not usually good and/or it comes with additional annual screening. 

You are in good company!