Pacemaker recipients: Looking for support from others

I’ve been trying to think how to post this, but I think it’s important particularly for new members to know I’ve had my pacemaker a year and a half and in that time I’ve been fighting an issue of having trouble breathing every time I move my arms I’ve asked on this site as well as every doctor’s appointments. What could be causing this issue? I’ve had multiple test, including an echo a stress test a heart Cath nothing could be found to cause this issue. My primary care doctor sent me to a pulmonologist. They couldn’t find anything there all this time. My doctor kept having the physicians assistant give me the results of the test saying there was nothing they could do. I finally got a little upset with the physicians assistant and demanded to see a doctor because the physicians assistant told me at my age I probably just have to learn to live with it. I was 75 when I had the pacemaker on planet and now I’m 77 I was not ready to accept that when I finally got to see the doctor. The doctor said they done everything and couldn’t figure anything out, but they would call in people from Medtronic the makers of my pacemaker and see if they had any advice two technicians. Medtronic came to see me in about 15 minutes. They had figured out that it was simply the settings on my Pacemaker. They set the pacemaker correctly and now I have no problems at all to think that I spent a year and a half having trouble breathing and not being able to do the things I wanted to do it’s ridiculous so I’m telling people that are getting a pacemaker today. You have to keep fighting but eventually they’ll get it right and people that are stuck seeing physicians assistance. You have to keep fighting to see a doctor cause eventually, the doctor agreed that he didn’t have the answers and was able to push me to the technicians from Medtronic who worked on the pacemaker to get the settings, right I’m sure there are some good positions Assistance out there unfortunately I didn’t have the right one.

A support group sounds like a great idea. I’ll be a new candited to Pacemaker, hopefully. Glad to join the group

A support group sounds like a great idea. I’ll be a new candited to Pacemaker, hopefully. Glad to join the group

@mauricepower
Got to remember you have a foreign device in our body. Yes over time the body will encapsulate the device and it usually results in less feeling of device and pain, etc.

However when placed below skin (mine is under chest muscle) movement of your muscles from your arm and chest can cause some irritation to the area around your device.

What I did when I first got mine was to remember when I felt pressure, irritation, etc. and what I was doing at that time and refrain from doing that.

I do water aerobics 5 days a week and we use our arms in all types of movements. I refrain from any exacerbate movements of my left arm that cause irritation or pain in the area of my device. I just do something else. I have found I know what is irritating the device or wires and don't even have to think anymore but remember to alter the movement.

I also found that sleeping on my left side put a lot of pressure in the area. I use a pillow to raise my upper body when sleep on my left side. I also use a pillow under each arm regardless of which side to prevent downward pressure onto chest.

@mauricepower
Got to remember you have a foreign device in our body. Yes over time the body will encapsulate the device and it usually results in less feeling of device and pain, etc.

However when placed below skin (mine is under chest muscle) movement of your muscles from your arm and chest can cause some irritation to the area around your device.

What I did when I first got mine was to remember when I felt pressure, irritation, etc. and what I was doing at that time and refrain from doing that.

I do water aerobics 5 days a week and we use our arms in all types of movements. I refrain from any exacerbate movements of my left arm that cause irritation or pain in the area of my device. I just do something else. I have found I know what is irritating the device or wires and don't even have to think anymore but remember to alter the movement.

I also found that sleeping on my left side put a lot of pressure in the area. I use a pillow to raise my upper body when sleep on my left side. I also use a pillow under each arm regardless of which side to prevent downward pressure onto chest.

I was under the impression that the chest discomfort/pain might stop after the pacemaker becomes imbedded. It sounds like that is not case.

@jc76 My pacemaker is very close to the surface as I do not have a lot of fat to pad it. In addition, I am highly allergic to nickel which the pacemakers have from what I understand and I do itch often in that area. They had no choice because they didn't have the leadless pacemakers at the time. I went into complete heart block after my surgery. They had me on an external pacemaker for 4 days but my heart never started so...

I've discussed with my cardiologist and he doesn't like the risk of going in and replacing the pacemaker until it is absolutely necessary.

@snc6007
Have you compared your pacemaker pain to certain movements or pressure on it. I have had one for over 20 years. If I move my arms a certain way I get pain. Sometimes sharp sometimes dull. Your body will tell you when certain movements are the source. It is good to remember you have a foreign device in your body so you are going to feel discomfort if you aggravate the tissues and muscles around it. Again comes from my EP.

If you lay on your pacemaker you can also cause pressure on it and it will hurt. I do water aerobics 5 days a week. Even though I have had a pacemaker for 20 years (on my 3rd device) I still cannot do certain movements of my left arm without causing pain.

The mechanical heart you talk of is the device (heart bypass) that completely takes over of your heart pumping blood throughout your body. When you have any surgery of the heart you can disrupt normal electrical flow of your heart.

Your heart (per my HF doctor) has an automatic pulsing. It will beat at 82 bpm after heart transplants. Never goes up or down as the nerves going to brain are no longer connected. Why your heart would not start is another matter but could be from surgery have no idea as not a medical expert but a question you should have your cardiologist answer.

The biggest threat of AFIB is stroke. The strokes happen because blood will clot in atrium because is not pumping blood out. Then the clot can travel to your brain, lungs, etc. which is life threating not the AFIB. I think your cardiologist was trying to say this but not in a good way for your to understand.

A cardiologist will prescribed a blood thinner or anti clotting medications if you have sustained AFIB. I had AFIB on and off and not until I had sustained AFIB for 4 hours did they put me on Eliquis.