OK, Guys I need some support here :)

I have had my PM for 3 & 1/2 weeks now, Still have about 3 more weeks to go before I can raise my left arm above my head, So I have a nurse's aide coming in helping me with my shower & washing my hair. I am doing everything I have been told to do so the leads wont come loose.
I am only able to sleep on my right side, the Medtronic guy told me last week it could take a year before I can lay on my left side......
I feel like I should be doing more and have more energy than I do, but would like some 'Feed Back'..........of how long it took others to start feeling better, or back to normal, or do we ever get back to normal? I have never met anyone with a PM before, so I would appreciate any feed back and support you can give me.....Thank you so much.

8 Comments

Give it some time

by Theknotguy - 2014-02-17 09:02:16

OK. I had a lot of trauma before I got my PM. Broken rib, cracked rib, collapsed lung. Beat up from CPR. Was in a medical coma for six days. Got a temporary pacemaker then the permanent. My numbers might be a little different than others but it'll give you a timeline.

You shouldn't raise your left elbow above your shoulder for six weeks. Keep moving the left arm though because you don't want a frozen shoulder. Don't lift anything heavier than a gallon of milk (8 pounds) with the left arm for six weeks. You also aren't supposed to use your left arm to help yourself stand up.

Everyone forgets and raises their arm. Everyone forgets and lifts something heavier than eight pounds. Everyone forgets and uses their left arm to stand up. Everyone forgets and stretches their left arm farther than they should. Don't stress out - just don't make a habit of it.

To pull the leads loose you'll have to do something extreme. But if you do anything that would damage the leads it will hurt badly and you'll know you did something wrong. You can't dislodge the leads in you heart. If you could, you'd have a lot more problems than loose leads. Leads next to the PM can be pulled though.

They handed me a three pound bar and wanted me to move my arms left and right. I stretched too far and man-o-man did the PM pocket and leads hurt! So didn't do that again.

It's been four months for me. Finally flipped over on my left side and got about 20 minutes sleep. Then the PM started pushing on my shoulder and woke me up. So theoretically you could sleep on your left side after six weeks but you'll probably be wakened up by the pinching. After six weeks it's highly unlikely you'll mess up the leads just by lying on your left side. What I've done is to put the pillow on the left shoulder and then put my head on that. It's a pseudo left side sleeping but at least you get the feeling you could sleep on your left side.

Depending upon the trauma you had before depends upon how fast you come up to speed. Point being, it takes as long as it takes. Part of the problem is you have two leads going in the heart valve that pushes blood out. It reduces your EF (amount of blood pumped out at each heartbeat) and causes you to be short of breath and sometimes light headed.

What I've had to learn (the hard way, of course) is to take a little longer time to ramp up my activity. Give my heart time to increase the pumping and get the blood pressure up. So where I could jump on the treadmill and go up to speed in less than five minutes it now takes me fifteen. Part of that is due to the PM. Mostly it's due to the heart meds I have to take now.

Because of scheduling problems they started my cardio rehab after eight weeks. Due to the trauma the first week in rehab was a bear. Each week in rehab it's gotten better and at four months I'm better than before the PM. Where I'm not better is with stamina. But as I said above the problem with stamina is due to my meds and not the PM.

Unfortunately heart problems are not American fast food. We think we should get stuff immediately because we live with that. But heart problems go at their own pace. And pushing yourself doesn't speed recovery - it slows it down.

For example, I was up to 3.3 mph on the treadmill with a heart rate of 115 bpm. Doesn't sound like much, but remember I'm on the meds and maximum heart rate is 120. I went into a-fib, the cardio nurse grabbed my arm, dragged me down the hall, and threw me into the ER room. The gave me a cardizem drip for the a-fib. Two days later I could only get up to 3 mph on the treadmill with a heart rate to 110 bpm.

I also had to have a sleep study since I've got sleep apnea. The tech kept my pressure one to two points below what I get with my personal machine. Felt like I was suffocating all night. So I was in hypoxia all night. (Cuss and swear!) The next day was cardio rehab. The best I could do was 3 mph with 110 bpm on the heart rate.

So things that wouldn't necessarily make a difference pre-PM make a difference post PM.

Because of the trauma I had they've told me it will be a minimum of six months before I feel close to normal. It will be over a year before I will feel normal. And the one year mark is considered aggressive.

For the most part, I feel OK. It's only when I start to do exercise and start to push that I don't feel up to snuff.

Hang in there. Life gets better.

Theknotguy

My experience

by Jlynlindsey - 2014-02-17 09:02:31

Had my Boston pm put in a little over a year ago. I couldn't understand why I would be so exhausted by noon everyday after having mine. I would be so tried I would be on the verse of tears. I am now 65 raised 5 kids and always been very active and could not get over the feeling exhausted. A light went off in my head and it occurred it could be a new medication. Sure enough I started taking half of morning and other half at night.....and that helped so much. You should check with your dr. As soon as you can. It took me awhile to feel better but I have other issues going on.

More info

by Jonny - 2014-02-17 11:02:48

Welcome June. You don't tell us the background to getting your PM so difficult to give much feedback. Is it just the PM or do you also take meds? See you also live in the USA where drs seem to be so over cautious - scared of being sued if anything goes wrong I assume. Fortunately here in the UK we take a far more practical approach.
Following drs advice I showered myself from the beginning, being careful not to get the wound wet for the first 48 hours then not having the water from shower head directly on the wound for 7 days. So after a week everything was back to normal. I was told not to lift the point of my elbow above shoulder height for 4 to 6 weeks, which means you can lift your forearm to your head to wash your hair, and dry it. The PM techs told me that after a couple of weeks the leads should be reasonably secure already, from then on it is more that we shouldn't use extended reach or move the arm quickly upwards for another 2 to 4 weeks. I think the advice about not sleeping for a year on left side is rubbish. I actually found that after about 2 or 3 months I woke in the morning on my left side "by mistake" with no problems, so just continued. From then on I sleep which ever side I desire. On odd occasions I must just get in the wrong position and get an ache near the PM but this goes as soon as I move.
Can't comment on energy levels as for me I was fine within 10 days, but I had no other issues or any medications. I'm sure that for all of us the trauma of becoming bionic makes us anxious and maybe over cautious in what we do to begin with, later you forget that you have the PM at all for most of the time. Best of luck. John

Normal

by gleesue - 2014-02-18 01:02:44

You know it is actually simple. Putting in a pacemaker does not traumatize the heart so it does not need a lot of recovery. The issue are the connection of the leads and the pacemaker pocket. I went back to exercising in a couple of days. I just did my exercycle at first then progressed to light weights in two weeks, but nothing above the shoulders. Played golf in a little less than 6 weeks and tennis in 7 weeks.

You do not need to baby yourself. I am a left side sleeper so sleeping on my right side was not very comfortable. I tried my back for a while and back to my left side in about 2 weeks. Not a full left side though, kind of at about 45 degrees. It will take way less than a year.

As far as energy, some of the medications can really slow you down so you need to watch those and ask questions of your doc. Also, you may need a few tweaks on your PM. I had to have a couple in the first several weeks before the got the right settings.
You mention you have never met anyone with a PM before. You know thousands of us now.

As far as being normal. I'm not sure any of us are!

Jerry

Not long

by Ravenflight - 2014-02-18 02:02:48

They gave me a sling and all the usual warnings- The first night home after my PM surgery I woke up to find both arms over my head, I was about to stretch further when I remembered. I was sleeping on both sides by week 3. I was jogging by week 6. PM was put in Dec 2012, so it's been a year and 3 months. I still know it's there. I get occasional chest pain and tightness, which I never had prior to PM, but on the plus side I can now sleep soundly which I have never been able to do my entire life. I don't think I will ever feel 'normal' but I was back to my job of climbing telephone poles and pulling up 100+ lb manhole lids after 7 weeks. I started an exercise routine after week 1 of walking, pushing further every day. After 2 months I added sit ups starting with 10, now at 50. Now I can easily walk/jog 6 miles, though my normal hike thru the local hills every week is about 3 miles. Hope that helps- Good luck

Support

by Rog - 2014-02-18 12:02:46

On my first pm all seemed pretty good and it was a small ICD. It took about 5-6 weeks before I really tried any stuff that required physical strength. Went with that for 2 years, then my heart went into another mode and I needed the bi ventricular Boston scientific. I was told this was the size of a Mason jar lid. This took 3 weeks for me to get used to. I was told not to raise my hand etc. At 3 weeks I forgot and reached up and yanked the shower curtain. I never felt such intense pain! I thought maybe I pulled a wire, but I didn't.
On both pm I had, I have the Lattitude System- the monitor
box by the bed. The box and pm send reports to DR and BS.

Mod

by Mod - 2014-07-07 05:07:55

Reading these makes me feel great! Most are so positive. Had my implant on June 28th, went to work on July 1st for a few hours and still doing that each day. Not much pain. Mostly at night while turning back and forth from one side to another. Left arm and hand turned a little purple and ached, but it's going away more each day. Know nothing about pacemaker, have a lot to learn. Have a CRT-P. Have first follow up Dr appt tomorrow. No meds prescribed when I left the hospital.

Thank You For All Your Feed Back.

by JuneBug - 2014-07-07 07:07:21

I just wanted to thank everyone for all the Feed Back......I didnt even know I had any Feed Back, until I got an email today July 7th from 'The Pace Maker Club'.letting me know I had a message......So when I clicked on the 'Link' I seen I had 7 comments, some as far back as Febuary......I am so sorry I 'never' seen them until today.........I'm not so sure I am that Happy with the way this 'Pace Maker' Site doesnt let me know when I have a mesage or comment........other Site's I belong too are not like that.......Anyway with that being said, I do appreciate your feedbacks......... check out Face Book......WIRED4LIFE.......a wonderful Site for people with Pace Makers...........

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