Settings on impending implantation.

Hello, 

So reassuring to have this forum! However, it also raises many questions I'm not knowledgeable enough to answer, or sometimes even to ask. I'm 74 but previously lived an active lifestyle. I'm scheduled for a ON in Nov for TackyBrady from Sick Sinus Syndrome in response to Metropolol used for AFib.

I asked the EP everything I could think of,but frankly, I keep thinking if new ones. Of those I know who got PM's, they came home and lived. No tweaking. I can now see it can be much more.

I have a resting heart rate currently of 47. At night it goes down to 42. It seems they usually set lower HR to 60. I think I will feel anxious at 60  Do they usually start lower and work up to 60?

For the upper end I've struggled for awhile to get to 130 on inclines during daily walks. Some days it only goes to 85.  I walk alone and am apprehensive of HR suddenly shooting to whatever. If it is set to even higher as the upper end, I think I might faint. My rate does return very quickly. All I know to do is tell the doctor of this concern. 

I met with two EPs and while the first was at a major university and highly thought of, he and his staff were dismissive. I'm Type I Diabetic and when I made suggestions in managing it for the day of implantation, his PA stated they do not have patients dictating the treatment. Ok. I don't have strangers changing 40 years of out of their specialty treatment. Even pleading that I can't risk out of control time when infection is a concern didn't result in our working together.. The second doctor ias open to my suggestions. Of course my Endo was offered to consult.

A big concern is that I live alone so if I come home and am dizzy and/or fainting, I'm not sure what I can do.

I guess I have to trust at some  point. Are these valid concerns or am I too anxious? 

Thank you for reading through this!


7 Comments

Pacemaker upper and lower limits.

by Selwyn - 2020-10-25 14:31:22

Mostly the lower rate is set to 60 which seems to suit most people. Some have a slightly lower rate limit than this ( eg. 50). The battery life is extended at lower rates, though when you talk about dizziness, there is a tendency at the very lower rates to go dizzy on standing or sudden onset exercise as it takes a little while for the rate response of the pacemaker ( that bit of the PM that increases your heart rate on exercise) to kick in. You are unlikely to notice a lower rate of 60 compared to 47 as mamy of us were running lower than this prior to their PMs..

The upper limit is set according to age, fitness, activiy and again is up to negotiation. Mine is set at 120 beats per minute, any further increase the PM just lets the body get on with it. I wouldn't worry about the upper limit unless you fail to get where you want with your exercise. All these rate limits can be fine tuned at reviews with pacemaker staff so you get the best possible lifestyle from the device.

With regard to your Type 1 diabetes, the hospital should appreciate you can control your blood sugars yourself.  This is especially easy if you have a PM inserted under local anaesthetic as you don't need to starve ( nil by mouth for 12 hours) prior to a general anaesthetic that knocks you out cold.  If you have a general anaesthetic you will have to leave your blood sugar control to the medical staff as you will be unconscious!

I am sure when you get home you will be keeping a careful eye on your blood sugars and can adjust your insulin accordingly.  There is little chance of you going dizzy and fainting once you have had your PM inserted- if you are very concerned you can see how you get on in the hospital before discharge. After an overnight stay, I walked down the corridor to the hospital newsagent for a morning paper, walked to get a chest X-ray and when they had had a look at that, I was allowed home. The telephone is always available at home. Surely, you must live with the threat of a hypo and manage that anxiety? That is more than most of us have to bear AND you live alone. 

The way I see it, most of these doctors have fitted more pacemakers in a week than they have had lunches.

Too anxious? Yes and no.

by Theknotguy - 2020-10-25 15:11:51

About the doctors at the universities.  Some of those guys are so smart I don't know how they ever got married and had a sex life. Maybe they don't.  That's why they're so hard to live with.  

The problem with the dismissive doctors is that everyone tells you they're great.  But I really feel they're just royal pains.  If they are going to dismiss you up front, they can dismiss you when you have a real problem.  I've gotten rid of all my doctors who are hard to live with.  I've gone with the ones who will, at least, listen to you.  Maybe they don't do what you want, but at least they listen.  Yes, you as a patient don't dictate your treatment.  But you do make suggestions as to what will make you feel better.  And if they won't listen to you, get another doctor. 

There are standard settings for the pacemakers.  Most doctors have a set of rules they follow based upon what you have.  Then they make adjustments the further along you go.  If they have four options and use up all four options right off the bat, what do they do then?  I was six and a half years out when I had some problems.  My life style had changed - it had actually gotten better and my pacemaker couldn't keep up.  So they made some adjustments.  So it's not always a one time setting and you go with that for the rest of the life of your pacemaker.  One of the usual settings is to set the heart rate at 60 right at the start.  It's amazing how much better you feel when you're getting oxygen and blood to the body.  After the first couple of weeks you usually don't notice the higher heart rate.  Oh, and a lot of people who do get the standard settings, go home and live the rest of their lives that way.  A few of us don't.  I like to think we keep it interesting for our doctor's that way.  

Check with your health insurance to see if they'll let you go to heart rehab.  Due to all the trauma that happened to me I was able to go to heart rehab and that answered a lot of the questions you have.  You can also check with your EP and see if either they or the hospital you go through has some kind of heart rehab too.  You have to remember the cardiologists and EP's see hundreds of patients per year so it's standard and ho-hum for them.  They do minor tweaking for most of their patients and most people get along fine.  

You can also get the home service that allows you to push the panic button and call for help.  I think, fairly expensive.  

Post pacemaker, most people feel a lot better so the problem with fainting goes away.  Like I said, your pacemaker is making sure the heart is working and your body is getting more blood and oxygen so you usually feel better.  

If you had and active life style pre-pacemaker, you usually go back to an active life style post-pacemaker.  I went back to walking four to six miles a day, and working at a wood shop where I was moving 4x8 foot, 55 pound sheets.  No problem as far as the pacemaker was concerned.  And my diabetic medications worked a lot better because the blood was getting pumped around my system.  

Some people like to know more about their pacemaker and what it does.  You can do research and educate yourself.  I always get my pacemaker report when I go in and have a pacemaker reading.  I can't read everything that's on it, but it has helped with the questions I had.  Last time I was in for a checkup the medical staff remarked at how much I knew and was aware of what was going on.  So that can be a help too.  

Finally, the pacemaker is a help and not a hindrance.  Most people go back to their previous life style with minimal changes.  So keep that in the back of your mind too.  I wish you the best and hope you adjust very quickly to your new life with a pacemaker. 
 

Thank you!

by Pharnowa - 2020-10-25 15:20:13

Thank you, Selwyn, for your response!

I will be "sedated" and apparently it's the type where I will not be aware  My concern was that I was asked to cut dosage in half the night before of the long term nsulin. I know from previous procedures that doesn't work and I run very high the following day. My concern is the hospital staff seem to apply set amounts to lower BS. I can barely handle 5 units with a dinner. I've had them try to give me 15 units with no meal when BS high in ER. I could well die if I got that amount. The second doctor seems to respect my warning. The first did not. I have had a doctor in the past write in large print on the chart, "Listen to her." I'm trying to help and save my self from those who don't know my history. I will not be staying overnight.

Thank you Theknotguy!

by Pharnowa - 2020-10-25 15:30:35

Thanks for the thoughtful comments and support!

My retina doctor is hopeful my recent vision decrease will improve with pacing as she thinks I may not be getting enough oxygen. It IS exciting to anticipate many potential improvements.

Don't worry

by AgentX86 - 2020-10-25 15:31:14

It's way too soon to worry about settings.  Concentrate on healing completely.  There is no need to even think about settings yet.  It's not even relevent at this point. 

Your EP will likely setup your pacemaker with pretty conservative settings.  What is considered "conservative" depends on your condition.  Going by what you've said, I'd guess that they'll set the lower limit fairly low (50bpm) to try to get your heart to do as much of the work as possible.  What the other settings are would be even more of a guess and like I said, not really relevent now.  They'll change them down the line based on how you feel and what sort of demands you place on your heart.  No two of us are the same.

BTW, my EP is at a major teaching hospital, as was my thoracic surgeon, endo, and vascular surgeon.  My cardiologist works for the same hospital group but that's more of a financial thing.  Of all of them, the only one who was a bit abrasive was the thoracic surgeon but I really didn't care.  I wasn't there to have a beer with the guy and only saw him twice.  Once before and once after (my wife said there was another time but I was kinda out of it).  The rest have been great people with an unbelievable attitude. The admin types have been completely incompetent, however (forgetting to reserve cath rooms, forgetting lab requests, you name it).

Thank you AgentX86!

by Pharnowa - 2020-10-25 18:17:34

Thank you for the insights! You have endured, survived and thrived from so much! 

I do know this is minor and I hope I can tolerate it as well as you and others here have!

Insights

by AgentX86 - 2020-10-25 18:32:57

Bradycardia is the simplest thing for a pacemaker to fix.  It's what they do, after all.  A pacemaker will rarely do anything for Afib or any other arrhythmia.  Sometimes a pacemaker can out-pace some of these but it's not the usual case.

A pacemaker will allow your EP to increase doses of beta blockers and/or antiarrhytmics and it can compensate for side effects of these drugs.  That was my EP's original plan but I didn't want to go there until he tried everything else.  Reality had other ideas.

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