Pacemaker & ICDs: Introduce Yourself & Meet Others

@walkinggirl
I have heart failure also so have to limit my fluid intake. I have a similar device "Latitude" which is a system used by Boston Scientific.

What I have a ;problem with is when I want to do a manual remote send it fails.

@jc76 I wonder if a phone call to Metronic would be a next step. I found them pleasant and helpful when I first set up the data collector. Look in the box the device arrived in. Usually there are papers including one with a phone number for customer service.

I’ve had my pacemaker just over a year and ever since it’s been in I’ve had trouble with shortness of breath and feeling fatigued. I’ve talked to everyone about it and times I’ve got the feeling that they thought I was crazy. Finally, a pulmonologist ran some test and did a CT scan and has decided the promo is the placement of the pacemaker. She will be talking with my cardiologist this week to determine what my options are to help with the shortness of breath finally, I feel like maybe there’s an end in sight to this problem. It has something to do that. The pacemaker is pressing on something that is causing my shortness of breath. I’m just sorry that it has taken over a year to figure out a problem. I’ll keep everybody posted.

@jc76 I incorrectly read the type of device you have. Do call Boston Scientific to resolve your inability to do a manual remote send. I would think they want customer satisfaction and good workings with their devices. If you have an electrophysiologist, they may be able to help you resolve the issue, too.

@kb49 Welcome to Connect! I am so glad you shared your experience regarding the installation of your pacemaker just over a year ago. We expect the "fix" to solve our problem, not generate a new problem! Your persistence and a pulmonologist (they DO want their patients to breath easily and well), willing to get to the bottom of your SOB (shortness of breath) seems to be a giant step in the right direction. Each medical professional has solved mysteries related to the outcome of care and new mysteries may be developing often. A few weeks after my septal myectomy, I developed dizziness and giddiness and complained loudly. Each time I was examined it was in a sitting or lying position and nothing was found. I realized it happened only when moving about. After a syncope I wore a Halter monitor for a month and pressed a button each time (very often), when feeling dizzy. To make a long story short, I was experiencing many arrythmias. It was a wonderful day when I met Buddy, my ICD. Mystery solved. It would not surprise me that complications happen more often than we think. There are always studies taking place at Mayo - here is one regarding ICDs which probably is related to pacemakers as well: https://mayoclinic.elsevierpure.com/en/publications/implant-related-complications-relevant-anatomy-and-an-approach-fo/ We take it for granted that there is risk involved in just about everything and we weigh the positive outcomes against them. Where do you receive your care? Yes, keep us posted!

2008. I had a triple bypass, and a defibrillatorICD installed. There were quite a few times when the ICD needed to fibrillate defibrillate and it was, yes, it’s a punch in the chest, but it was not earth shattering no mind shattering it just Stopped my fibrillation. And I continued on. I didn’t have to report it the monitor that I have at the house registered and they would call me and ask me if I was OK and I would say yes yes yes that’s fine. Awesome 2020. I got a new defibrillator installed, changed its battery I should say. Now the old defibrillator if I was enjoying rigorous sex climbing hills you know for a Golf walking up mountain trails and that would go off and I would be fine immediately after it went off. I was just fine. 2020 they put a new battery, changed the location and it’s been fine for the six years. I’ve had it. March 30, 2026. This thing went off like an automatic revolver. They gave me a good bang and like always I felt it was going to be the only bang and that I would resume rhythm until it banged me again banged me a third time on the fourth bang it was absolutely body and mind shadowing. I immediately called 911. He gave me two light bangs while 911 was on our way they brought me to the hospital. Dr worked for a few hours trying to unclog a pathway. They created back in 2008. In the process of cleaning that clog out of the way there was collateral damage to the lungs. The lungs would not stop bleeding for a good four days after the hot surgery. They got the lungs to stop bleeding using their miraculous intelligence, and I was left with blood residue in the lungs. It took another four or five days for me to spit up the rest of the blood and coagulant and now I am not spitting up blood. That is the gist of what happened from March 30 to April 14, 2026. The reason I am commenting now is because that fourth joke that I told you that was mind shattering body unbelievable I don’t ever wanna feel that again so I’m contemplating on deactivating the device. And of course I have a fear if I deactivate it I may have a stroke and become a burden on my family, but I really don’t want to feel that kind of a jolt again that was that was extraordinary. It was like I saw the whole skeletal part of my body that was all lit up and reds and greens and yellows and purples and it lasted only a couple of seconds if that long, but oh my goodness gracious I don’t ever wanna feel that again. I’m 73 years old. It took 20 years to clog that artery that they created way back in 2008 and I may not feel that particular thing enough for another 20 years, but I don’t wanna feel it in 20 years. I don’t wanna feel it again so my fear is a dilemma of activation deactivation. Because I had it in for the last recorded 18 years I’ve had three grandchildren born I’ve had my HarleyDavidson motorcycle driven across the countries four or five times for different parts of the country and I enjoyed it. I loved it. I loved every minute of it and I don’t wanna die, but I don’t ever wanna feel that kind of a shot again. So I’m kind of looking for feedback from people who may have experienced similar events I’d like advice ultimately the decision is mine. Thank you for listening to me.

Hi, I'm Jerry. I am currently pre-op. My main concern is measuring what the direct benefit will be for me. Is it
worth the time and disruption to have the thing implanted? Some have commented that they have derived
little to negative benefit from the implantation. My neurologist has identified two (2) areas of infarct in the past
two years. I certainly want to avoid any more instances of that sort. But, when I ask if the implant can prevent
another occurrence, she becomes circumspect. So, I don't have a lot of confidence in the device. It seems to me
that the benefit accrues to the researchers, as much, (or more), than the patient. Please relay your comments
positive or negative.

@walkinggirl
Thank you. Will do. I have called them in past and they have helped a lot.

@manny53 That is a story! Buddy, my ICD, paces, I have not been shocked but that's not to say it will never happen. You are an inspiration! You have done much and enjoyed life even with the "inconvenience " and traumas you have experienced. Between the lines I am reading that the shocks/shots are frightening and yet because it happened, you are in love with your life. Grandkids! Motorcycle trips! No, we would not choose to have a device but at the same time, your words here, your grandpa role and fine times with your Motorcycle buddies is possible because of it. It definitely is ok to ask us to listen because no one truly understands unless they have walked in your shoes. Or rode your bike.

@jc76 I also have a Latitude home Monitor. I have had it for many years. Recently, I got a call stating that my Monitor is no longer working. I’ve had it in the same place for years and years now they tell me I need to move it to a different place in a different socket in a different part of my room and I don’t have that I did move it around. It worked once and now they’re telling me it’s not working again. I don’t know. It’s very strange. You have to disconnect the phone line push the black button on the back of the Lattitude unit unplug it plug it back in push the button again and wait for it to turn from yellow to green it’s a process. I have a woman I don’t know her exact title but she monitors my monitor and I call her and she gives me help but all of a sudden my Lattitude doesn’t work.