Pacemaker recipients: Looking for support from others

Hello, I'm shortshot80 and I have had a pacemaker (medtronic) for almost 10 years now, am due sometime I think in the next six months. Perhaps I am fortunate, as have not had any problems with mine. I send a report by phone every three months. So far no problems with it. I however have several other problems. I found out a year ago last January that I have lung cancer in both lungs. Plain lung cancer in the right lung and mesothelioma in the left lung. I just found out last Thursday that both had grow some. My pacemaker is the least of my problems. I also fond I have kidney disease. So I can't leap any more buildings. I just turned (84) yesterday. Everything seems to be a little more scary and I can't make any difference in anything I do. Just visit with my church people and my maker. Have a great day!!!

@kanaazpereira

Thanks you!

I'll go back to the ER if I really have to, but it just feels like it's a waist of their time. Twice for chest pains after the second surgery, both time feeling completely different. They have truly been wonderful to my wife and I. I will never forget how much they have helped me through this all, and I know I would not be here without their help!

I'm new to all of this, so other than posting now sure how to contact someone.

It's a dual chamber Medtronic pacemaker.

Hopefully they'll get me in sometime today. Maybe it really nothing.

I've read so many different things that it's hard to tell what's actually fact, versus fiction.

Hello @canammick,

Welcome to Connect; thank you so much for taking the time to share your history. What a journey you've been on!

You mentioned that, "I'm so sick of going to the ER. Just feel like it's waisting their time."
Canammick, I'd like to emphasize that feeling like you may be "bothering" your healthcare team, or the ER, could have serious implications, especially with some symptoms where it's difficult for us to know whether they are serious enough or not to need review by your doctor. You are the best advocate for your own health.

While we wait for the other members in this group to join in, I'd like to tag one of our Mentors, @cynaburst, as she may have more insight for you.
You may also be interested in this information from Mayo Clinic, about pacemakers and complications that may arise: http://mayocl.in/2n6AE6y

@canammick, what type of pacemaker do you have?

Bless your heart ,you have really been through the wringer. I'll put you on my prayer list, even if I don't know your name. God knows you and cares about you. May you look back on this one day and laugh!

First, I was so happy to find this last night that I didn't get to sleep till after 4 this morning! Read every post time and time again.? It's comforting to be able to see what others have gone through, and are dealing with. My experience with my pacemaker.

Two days after I turned 62 February 2017, I was admitted to the ER for a slow heartrate, upper 20's and lower 30's. Talked with the Dr the next day and he explained that I needed a pacemaker. Thursday morning, had the pacemaker implanted, and was released the next day. Other than being sore, I had more energy than I had for a long time. I was on the treadmill within 3 days taking it easy, and was feeling better each day.

Everything was fine till day 9. Had a strange feeling in my chest area that I did not know how to explain. Instead of going back to the ER, I just lived with it, till it began hurting more the next day. Back to the ER, and they found a had I had a blood clot in my left lung. Pain meds, and started on Xeralto.

Two days later I had a normal appointment with my Cardiologist. Got out of the car, and before I got more than 30 feet, I had sever chest pains, and trouble breathing. If I tried to get more than a fraction of air in my lungs, the pain was just terrible.

More test, x-ray, cat scan, and ct scan. The surgeon hooked me up to see exactly what was going on. The pacemaker was working, but wasn't having any effect on my heart. He contacted the Medtronic rep, who was in another town and he drive in and confirmed with the Dr that the lower lead had migrated through my heart. Asked where he would go and he made a recommendation to Wake Forest Baptist hospital. Now the problem was that I was on blood thinners, and the surgery had to wait for at least 48 hours.

Wednesday night they loaded me in an ambulance, and on the way I go. My heartrate was going down in the 20-30 on the 2 hour drive there. The paramedic ensured me that he had everything to take care of me, and he sure did!

Arrived at Wake Forest Baptist hospital, around 10 pm and had a nice long chat with the cardiologist. He said they would be doing the surgery the next morning.

Thursday morning, around 11, I was heading for surgery. From the time we got into the elevator, I really don't remember a thing. 5 hours later I was back in my room. They had to run a tube to the sack around my heart and removed about a cup of blood from where the lower probe went through my heart. Then, they removed the lower probe so they could make sure it did not bleed to much. Once they were satisified with that they inserted another probe in a different location. Drained a little more blood from the sack around my heart and patched me back up.

Two days later I was on my way home. This surgery was tough. Having been cut open twice within 16 days apart in the same spot was very painful compared to the first surgery. Much more swollen that the first time. To this day, I am still very sore, but each day is a little better than the day before.

Back to the ER a week after surgery with chest pains. They said it's from the area around my heart. More meds, and back on Blood thinners. Still felt the pain, but it was not as bad.

A week later at work, I started feelings real bad again. The chest pains started getting worst, so back to ER again. I know most of these people, and they are wonderful, caring, and do everything they care when I'm there. More meds, and steroids to help with the inflammation around the heart. So far, since my last visit, I've had no more chest pains for 4 days, until yesterday.

Got up around 9, and decided to cook breakfast for my wife. She's been worn out from all of this, and I can say it's been hard on both of us. Started cooking, and I noticed a pretty sharp chest pain ever once in awhile.

Took my blood pressure, and it was 151/84 with a heartrate of 78. Every time I felt the pain, I noticed my heart would skip a beat. It would work fine for 10-15 seconds, sometimes even longer, then just skip a beat, and that's when I would get the pain. Had my wife check my pulse without telling her what was going on, and she also felt it over and over again.

Called and left my Dr's nurse a message this morning. Now I'm just waiting on her to call me back.

I'm so sick of going to the ER. Just feel like it's waisting their time. It's not they way them make me feel that way, cause they have taken care of me each time with a smile on their face, and have told me over and over again to call 911 when I'm having problems to avoid my wife having to drive me there.

I'm really thankful to be alive, but having so many problems is taking its toll on me. Hopefully this will be nothing, we will see!

You have a good outlook. I discovered my cardiomyopathy by happenstance as Weill. Had the pacemaker put in just over a year ago. I'm 53 now but trying to keep the same outlook

My story...probably started 30 years ago more or less. By happenstance I was found to have junctional node rhythm. Saw a very reputable cardiologist at KUMC in KC who put me through a battery of tests and then on a medication used for asthmatics which made my heart race and was a quick way to lose weight-5 pounds in a week but I just couldn't function. Everything inside was as if someone had their foot on the gas pedal and I couldn't slow down so my medication was cut in half and that was not helpful so the cardiologist thought I would be fine and not to be concerned so I moved on with my life. Fast forward to early 2015 I went to my primary care provider with the compliant that I felt like the blood flow to my head wasn't going all the way up-crazy I know but that's how it felt-unbeknownst to me it was lightheadedness I was experiencing. So they found that I had a very low heart rate which is common in marathon runners which I am not or heart so I went through a battery of tests from an echocardiogram to a stress test that flipped out the technologist to a month long cardiac monitor which indicated I had 6 second pauses in my heart beats. During that stent I firmly believe that God intervened twice or I might not be here today. In June 2015 the pacemaker was inserted and life has been an adjustment. As a side note in December 2014 I had a calcium cardiac test which didn't detect any plaque and in 2015 prior to the PM placement I had a CT vein mapping that showed I have a strong heart just no rhythm. I try to keep a sense of humor and if I need a nap and I can't power through I take one. In April i will turn 63. I take metoprolol 25mg that I cut in half and take twice a day. I'm noticing some changes that I haven't addressed yet as I am trying to rule out if they are stress related. Life sometimes gets in the way and it has recently settled down. I believe I am in a win-win situation. Each day I wake up and I am here I am very thankful and if that changes and I have a heavenly address I will have reach my final destination.

Lou

<br>---- Mayo Clinic Connect wrote: <br>Hi,<br>I've only had one very short lived episode of A-fib since the PM. Since my PM creates every heartbeat I have, quite naturally my first battery will not last as long as someone's who only kicking in now and the. But, worse things have happened than needing a replacement PM. I'll cross that bridge when I get to it. What is your current situation and I hope you are doing well.<br>Beverly<br>

<br>---- Mayo Clinic Connect wrote: <br>Hi,<br>I'm doing great from the rheumatic fever. I had that when I was only 9 yrs. old and now am 74. So during my teen years and early 20's I continued to improve yet there was much scar tissue left on my heart. By the time I really needed it, technology had caught up to my situation and I was able to get my mitral valve replaced (with a metal valve) and that covered things for a while. then a few yrs. later, I started into a-fib which remained an ongoing problem until I had the ablation and pacemaker about 3 yrs. ago. The medication usually used for a-fib - well I think I had gone thru all of them many time over. They would last about 2 months, then just quit working, so on to the next one. It got to the point we were going back and trying some of the first ones I ever used. But, in the end, nothing would bring the heart rate down, so we opted for this last procedure. I am, for the most part, pleased with this, but the quality of life is not the same. I am pretty limited in how far I can walk,etc. Otherwise, all is well and I guess this saved my little life. How are things with you and what's your story of where this all began for you.<br>Beverly<br>

No sure if I read this correctly but I haven't had rheumatic
fever.