Recovery Time...How do I make sure My PM is set right before I leave?

I am so thankful for this site! I am getting so nervous !!! I go on Friday morning for my pacemaker!

My EP has not got called me back...I have questions about the settings and recovery time etc.

Soo, I am hoping to get some answers from you. I trust what you tell me more than the doctors anyways. If there is one thing that seems to ring true while I read the post in this site....it's that "they do Paint a Rosey Picture".

1, Will I be able to walk go for a walk the next day? Will I be in a lot of pain. I am getting it placed under my breast...so I know it will be more painful....but better in the long run.

2. I want To make SURE that I get my setting set where I want it before I leave....Can't they set it where you want when they put it in?
I ask this because I see so many people post about needing them to change the setting...and having trouble getting them to do so.
I have discussed having mine set at 36 to start with.....I have always had a low HR so....if you blast me to 50...thats what it will feel like. Even at 40....I would be paced probably 70% of the time.
I am active..I run...hike...bike..etc.
I will only be getting a single lead. He was going to do a dual lead and changed his mind. he said he would just use beta blockers for the tach.
SOO..even though he agreed to set it low until I get used to it..and so I don't pace 70% of the time....I don't trust him!!!
He didn't want to set it that low at first...I told him if he didn't ..I wouldn't be getting it without a second opinion..then he agreed. BUT..he keeps saying....we can set it where "WE" want.
I can't get him to come out and say he will set it at that rate.
3. Does the St. Jude tech set it or does the EP?
My EP keeps saying he sets it...and he makes any adjustments needed.
Between this and finding out that if I lose my insurance I will be walking around with a pacemaker with out being able to afford adjustments or replacement.....I have to wonder if I am doing the right thing!
I know I need it.....but ....well I am sure alot of you have been where I am at.
Thank You...........Holly

7 Comments

good luck!

by Tracey_E - 2008-07-22 01:07:11

Mine is under the breast also, you will not regret it. Every female PA, technician or doctor who has ever seen me marvels at how hidden it is and wonders why they don't do all women this way.

1.Yes, you should be able to go for a walk the next day. They tried to keep me on bedrest for 24 hrs after the first implant but I pestered them and was up sooner than that :o) You'll probably be in a sling for a day or two so you don't move the arm too much until the wires settle. I took it easy for 2 weeks, minimal lifting left arm for a month, full activity and back to weights after 6 weeks.

Pain, I really didn't think it was too bad. If having a baby was a 10, I'd say it was a 6/7 in the hospital, down to a 3/4 by the time I went home. They offered me painkillers but I never took more than tylenol after the first night. It probably will feel like you're on fire when you first wake up in recovery, but they're usually pretty fast to load you up on morphine so you'll sleep through it. It was down to a dull throb after that, very manageable.

2. They will set it when they put it in, before you wake up. The St Judes tech will be there in surgery. It's almost impossible to get the settings right immediately, esp if you are active because unfortunately, a lot of it is just an educated guess. They'll set it to what they think will work, but as you recover and get active again, it may need to be tweaked.

I'm no expert, but I'd ask for the second lead. It's no more work to put it in now since you're getting one anyway, kwim? Better to have it and not use it than regret not getting it later. If you're active, it might be a better solution than beta blockers. Beta blockers keep your heart rate down and make it more difficult to work out.

3. The St Judes tech will set it, they're the ones with the computer. The doctor has to approve it, like a prescription. Most of my little changes are made by the tech when I go for a check and he just tells the doctor what he did. Sometimes the doctor has to sign off on a change. I rarely see my doctor, my relationship is with my technician for the most part.

If you need it, you need it, so don't question your decision. Things have a way of working out, don't worry about something that may or may not happen at some point in the future.

I hesitate to say this since your surgery is so soon, but it doesn't sound like you have a lot of confidence in your doctor. Have you had another opinion? Even a good doctor isn't right for every patient. It's a lot easier to deal with health issues when you are comfortable with and trust your doctor.

Getting A PM

by SMITTY - 2008-07-22 03:07:52


Hello Holly,

I see Tracey has already replied tt you. Since I was having to write this offline, and haven't read Tracey's comments, shoud I contradict her, take her word for whatever.

I'll try to answer some of your questions and do it in the order you asked them.

"Will I be able to walk go for a walk the next day? Will I be in a lot of pain. I am getting it placed under my breast...so I know it will be more painful....but better in the long run."

Since mine is under the collar bone, I can't really guess how much soreness you will have in comparison to mine. MY GUESS is you will certainly be able to walk around the next day. I went walking the afternoon of the day I got mine,albeit a slow and short walk because my wife was concerned, not because of any discomfort I was having.

"I want To make SURE that I get my setting set where I want it before I leave....Can't they set it where you want when they put it in? I ask this because I see so many people post about needing them to change the setting..."

The Greyhound Bus ads say "Leave The Driving To US." I say you shoud leave this decision to your doctor. There are a number of things involved in establishing the initial settings for a patient.

"Does the St. Jude tech set it or does the EP?"

The doctor will make the final decision on what your set points will be, although the St Jude Rep. may actually program the settings into your pacemaker. Your doctor will make future adjustments as necessary based on his findings and your input.

Many people need no adjustments on their PM although a few of us do have to have adjustments. It is seldom we need more than one or two adjustments on the original settings.

Routine checkups are usually at 3 to 6 month intervals. Again, your doctor will decide what Holly needs as we are each different.

If you conclude what your experiences may be based on what you read here, let me quote you some numbers. The last time I looked I think there are about 7K members of the PM Club. There are more than 3 million people with pacemakers, so our group is such a small part of the total number, I think it is impossible to say what is seen here is what our experience may be. Getting a pacemaker is truly a case of wait and see how things go, and the odds are everything will be fine.

As for you feeling your heart beat if the PM settings are higher than what you normally have, forget that. My heart beat was in the low 50s, and had been for years, when I got my PM and the low set point was 80. I did not know it was that high until I happen to check my HR. Although I asked for it to be reduced a few weeks later because that just seemed so abnormal for me, I can't say I ever felt the higher rate. And when the setting was lowered to 60 I could not tell any difference.

One last word, yes you should think about getting a PM, but don't worry about it, because as I said earlier, the odds are it being an unpleasant experience are very slim.

I wish you the best.

Smitty

Thank you Kev-o

by LIVE_STRONG - 2008-07-22 07:07:36

I do have severe acid reflux. I take nexium 40mg twice a day.
Which setting would I need to ask about?

So glad to hear you feel so good! I hope I am not tired all the time any more....and the constant confusion is terrible!
I actually have to laugh at myself ! I am blonde! lol

Holly

Recovery Time

by kev-o - 2008-07-22 07:07:51

Hi Holly! I am new to this whole process, but I just had a St.Jude PM put in under my collarbone on 7/11/08. I am a male, 42 years old, and can tell you it was the smartest decision that I have ever made to have the PM installed. I did have some acid reflux issues right after I got out of the hospital due to the settings were too strong. So make sure you let the techs know about all of your concerns, the techs should also come and see you in the hospital after the procedure. Best of luck and Godspeed! Oh and just a side note, I have not felt as good as I do in 2 years!

relax!

by Tracey_E - 2008-07-22 08:07:39

I don't think you really need to worry about the settings just now. Most patients get programmed in the hospital then never need to think about it again. Some of us here have either had problems (minority!) or are just geeks who like to understand how it all works so we ask a lot of questions. (some of us are a technician's nightmare cuz we are both!)

The only reason I even brought it up in the first place is because active young people who are otherwise healthy are more likely to need customized settings than someone inactive simply because we're asking the pm to do more, to function under a wider variety of circumstances. That doesn't mean to imply you are going to have problems, and I apologize if my comments go you worried! Give it a few weeks and see how you feel. Odds are good you'll feel fine, probably better than fine! If not, just know that reprogramming is easy.

TRACEY....it is my nature to worry..

by LIVE_STRONG - 2008-07-22 09:07:28

NO....you did not make me worry. I already knew about the settings....just not how they work.

And I have discussed the low setting being set low from day one as I am very active..they actually thought that may be why I have the slow HR..but decided it was too low and could be the cause of the chronic fatigue and confusion...and other things.

I just did not realize there was a high setting with a single lead.
The doc said he would take care of that with the BB.
So no need to apologize.....I want to undersatnd it the best I can.
I do undersatnd Rhythms as I am a Paramedic...but we don't study pacemakers...just how to indentify a paced rhythm.
ALMOST NO patients remember to tell you they have a PM...I either find it by seeing pacer spikes on the monitor or I see it implanted.

Thank you, Holly

ooooh, fun!

by Tracey_E - 2008-07-23 07:07:38

You get to play with the coolest toys! I took my Girl Scout troop to the fire department and had the best time pestering the nice paramedics with questions about the external pm/defib's they carry on the truck. The technology just fascinates me, it's amazing to me how something that was just a thought 35 yrs ago (the year I was diagnosed) is so tiny and even portable now.

And I'd probably be one to forget to tell you about it! You think about it all the time when you first get it but once it's doing it's job and you get used to feel good again, it just becomes a part of you and you seriously can sometimes forget it's there. Good thing the spikes are hard to miss :o)

See my other post, don't be afraid of the low setting being too high. I never felt like my heart was racing at all, I just felt full of energy.

You know you're wired when...

Your signature looks like an EKG.

Member Quotes

I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.