life after a pacemaker

hi everyone,
I am wondering how many of us feel that we are totally back to the way of life that we had before the implant. I am doing well but not back to where I was a year before the PM. Am I asking for too much? My EP doctors don't seem to care if my energy is not the same or that I sometimes get lightheaded going up stairs. Should I learn to live with my limitations or keep after the PM clinic. In the clinic we never get the same doctor twice. All are EP trained card. but they spend most of the visit reading your file trying to see what the other doctors in the clinic have found. Just wanted to see if anyone else feels the same way.
Thanks,
Gary

11 Comments

Pacemaker settings

by 1bassfishinfool - 2008-06-11 01:06:13

Hi Gary, I have also had my PM for a year. I have found that there are some people better at setting the PM then others. I tired easily also. My Dr. reset my PM to no avail so I went back and his partner reset it. Man did that help. He adjusted it then had me walk up and down the hall.He then checked it again. We did this several times until I no longer was tiring out. My other Dr. simply set it while I was setting down. I feel great now. Chuck

Life after.........

by ladysmom - 2008-06-11 04:06:20

I have had a pm for almost 13 years now. It, along with some meds and an ablation, did give me my life back. Am I like I was before, no, but then I was never like I was!! I was born with congenital heart defects and 50 years ago, when I was 9, I had open heart surgery. It literally gave me life........I would have died without it.

However, about 17 years ago, everything fell apart. The thinking is that since so much time has elapsed with early heart patients, they can see that surgery as well as saving lives, also created problems down the road. I have an extremely slow HR, always was slow, but became slower, I have AF (constant) which made me have mini-strokes, I have CHF, and more. Some meds helped but others made me feel much, much worse. Trial and error.......

I recall my cardio telling me to go and live life after I got my first pm. I tried, but I still have fatigue which is so hard to deal with. At first I thought who is he to say 'go and live life', how could I? But now, my meds are good for me with no side effects and while he has tried hard to get this second pm working well for me, it is not perfect and it doesn't look like it will be. A new one in a few months time.....But I am so thankful that medical science, with all it's imperfections, has allowed me to live my life, to get to age 59, to be a mother and a wife. As for the fatigue, I am lucky that I am able to have a nap when it strikes. Inconvenient sometimes but......I do what I need to do.....

After reading a lot of people's stories, I am so glad that I have had continuous care with the same cardio and his EP, she is wonderful! I am thankful that I am not passed around to different people all the time. It must be difficult to have continuity of care. I don't know what the answer is, I'm sure you can't just go wherever you want........

I wish you well.......

I am great

by bowlrbob - 2008-06-11 08:06:08

It took about 1 and 1/2 years but now after 2 and 1/2 years i can say I feel back to normal. It took about 6 months to get the settings right then 1 year to catch up. But the last year has been great. Hang in there, if you aren't better soon ask about some possible different setting for your pacer. They took mine from 50bpm to 70 bpm. I guess i just needed more oxygen than i was getting at 50. It has made a world of difference. Bowlrbob

Post Pacemaker

by Pookie - 2008-06-11 11:06:12

Hi Gary!

I agree with you 100%, I do NOT feel any better since my pacemaker. Lost my umph. I am more tired than I have ever been.

I can only speak about my pacemaker clinic and the 5 minute routine check that they do. I know it is their goal to get you in and out as quickly as possible after I have waited at least 45 minutes for my appointment.

I just feel that the techs don't want to go that extra inch to see if they can help you. They always ask me how I feel, I tell them that I am extremely tired since the pacemaker, and then they say "oh, sorry you feel that way!" The next time I go, I am going to ask for them to list EVERY feature that is adjustable.

One day they just might listen, so I'm not giving up.

Pookie

same as you

by sgrozinski - 2008-06-11 11:06:21

Hi Gary,
I had my PM put in June of '07. After some adjustments( I am @ 75 ) and for about 6 monthths I felt better. A few days ago I had a catherization (2nnd in 1 year) because I am breathing heavy and short of breath when I do most anything. I have no blockages . If I am doing nothing I feel fine but any kind of exertion and I'm breathing heavy and short of breath. My cardiologist hasn't said that I should have the pulse setting higher. I think he thinks my problem is in my head. I can't play all 18 holes of golf (riding in a cart) and I can't cut the grass for more than 5 or 10 minutes before I'm out of breath. I would say that I am about 50% of where I was before I needed the PM. I asked my Dr. if I should be able to do what I was doing before the PM and he said yes. I guess You and I are in the same boat. I really thought I would feel better than this. I guess we will just have to adjust and cut back on our activities. By the way, I am 75 years of age and my wife thinks I feel this way b/c of my age...I don't.
Good luck, Gary ... hang in there

Condition after implant

by ElectricFrank - 2008-06-12 01:06:06

Gary,
There are so many factors that affect how we feel after the implant. One important consideration is how long we went with the condition that required the pacer. In my case I had the pacer just a few days after I developed the AV block so my body didn't have time to deteriorate from poor blood flow.
The other is the effect of meds and pacer settings. Be sure and get a copy of the pre and post programming sessions.
I have been very aggressive in "managing my own case" as the docs call it. I am not on any meds, and have insisted on having the settings not be restrictive even if it is slightly more risky. As a result I feel great. I am 78 and hike in the desert a lot. Last summer I hiked at 13,000ft. Obviously at 78 I'm not the person I was in my 20's.

frank

Life the way it was??

by gldoble - 2008-06-12 04:06:10

No, life will differnet, but it will be better. You may not be able to walk as fast and find yourself getting out breath faster. But in time, with some exersise and the meds you will feel fine.

How you define "your life", will make the determination as to whether or not you like what yo have become. Cause you know what you will be better. Me it took no time aside from loosing 20lbs and changin my diet to get my colletive S#@$ back into a single sock. I suppose that the hardest part was overcoming and still trying to overcome what has happened.

So I take each day as it comes, good, bad or ugly.
I don't really like the ugly ones but they as all things are part of life.

So enjoy something new for a change.

Greg

Post-PM Life

by richan - 2008-06-12 10:06:44

Hi Gary,
As you can see, there are a wide variety experiences post-PM.
I got mine back in March 2005. I have had (and still have) a wonderful relationship with my PM people. They worked with me for about 1.5 years doing a lot of "fine tuning". They would only make one or two changes at each visit. I guess if you make a lot of changes in one visit, you won't know with any accuracy which change helped. My measure has been comparing how I did swimming work-outs pre-PM verses post-PM. I am doing pretty good - clearly not as well as pre-PM.
Looking at the big picture, like many members, I would not be here if I did not have my little gizmo.
It is OK. I will keep at it - chasing and sometimes catching the younger members in my swim group. Every day is a good day!
Hope things go well for you.

Richan

Jogged my memory

by bambi - 2008-06-13 11:06:01

What Chuck posted reminded me of the trouble I was having with my settings about three years ago. I was actually in the hospital when a new St. Jude rep came in to try to help me. My Dr. would listen to my complaints of SOB and fatigue with a bored expression on his face, look at the latest print out of my pacer interrogation, and tell me the pacer was working just fine. I was waiting for him to check his watch and start tapping his foot in impatience! This St. Jude rep asked me to demonstrate what I was actually doing when I felt short of breath. I showed her, and her eyebrows raised and she said, " well, I can see exactly what you're talking about. Let me make some adjustments." She changed a few settings, explained how and why she was doing it, and then asked me to repeat the activities. I immediately felt better and she encouraged me to keep in touch with her if I had any more problems! I believe you should demonstrate to the best of your ability, what you do when you feel bad. It might make all the difference!
Good luck!
Bambi

Fine Tuning

by shockbox340 - 2008-06-30 09:06:56

Bambi and Richan both bring up excellent points. These devices are complicated machines that sometimes need some intricate tweaking to get it right. You don't want to change too many things at once, because you could easily go from bad to worse and have no idea which change caused it. Pookie mentioned a 5 min appointment, which may be OK after all these tweaks are done but is not sufficient to address issues. In situations like this, the squeaky wheel usually gets the grease, so don't be afraid to speak up early and often! Most (but not all) of the time, those fine tuning adjustments can lead to some dramatic improvements in the feelings you are describing, but they take time and brainpower on the part of the person pushing the buttons!

FINE TUNING

by vtlaney - 2008-07-06 08:07:21

Hi Shockbox340...this fine tuning is quite interesting to me....I had my pm inserted on June 4th and have no adjustments thus far...Am certainly not feeling very well...very lightheaded, and kind of foggy since the beginning...am seeing my doctor this week...am curious as to what adjustments can be made besides the range in your heart rate. I have had two uti's as well in the last two weeks which is not helping the situation and have had trouble controlling my bp...not good all around...but am still hopeful that all will be better shortly.. Have learned so much from this site ...you are all great!!!!Thanks...vtlaney

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