New To Site - Opinions Needed

Hi all! I do not currently have a pacemaker, but I am looking at the need for one in my future.

I was diagnosed with 3rd Degree AV Block when I was a teenager. At rest I have a steady rhythm on both atrium and ventricles, but they are completely disassociated with each other. Looking back at my past history, my Cardiologist back then determined that it was congenital and told me that when I started feeling like I could not function any longer, that I may need a pace maker.

At almost 43 and feeling a bit run down, I decided that it was time for another checkup (after 10 years) and made an appointment with a new Cardiologist. They put me through my first ever stress test and found that my ventricles are very unstable when under stress. I have been told that this is not life threatening in everyday life, but "No Moderate to Heavy Exercise" unless I have a pacemaker to associate the rhythms of my heart. Since this is not life threatening, this becomes a choice rather than a necessity.

This seems to be an easy decision at first with an improvement in the quality of my life allowing me to be active and play actively with my grandkids, and I have done quite a lot of research on line, but the one thing I have not seen is input from those who currently have pacemakers and what the negatives or inconveniences are with having one.

Any help, guidance, or opinion would be appreciated!!

5 Comments

not a choice, imo

by Tracey_E - 2013-12-09 01:12:33

I am a few years older than you at 47. My 3rd degree block was found when I was 5 and my history is similar to yours except I reached the stage you are at now when I was in my mid 20's. I was given the same advice, to get the pm when I couldn't take it any more. So I waited and I waited, I compensated so long that I had no idea how bad I truly felt until I got the pm and felt better. I spent the last two years before I got it so tired I could barely do anything. One day my hr tanked and I almost died, ended up in emergency surgery. This is not the easy way to do it, in case you were wondering! That was in 1994.

When we were kids/teens, pm's for younger people were virtually unheard of and considered a last resort. Some drs still feel this way and don't want to give them to someone young. I disagree. If we feel bad and there is a fix, who cares how old we are?! Outdated thinking, imo. Newer pm's are small, very high tech and when our only problem is av block they easily give us a perfectly normal heart rate. I wish I'd had one much sooner.

Downside? None! Yes, there are some drawbacks, of course, but imo they are so minor compared to how good I feel that they're barely worth mentioning. My energy went up exponentially. I suddenly could play sports and work out, which gave me even more energy. My mind was more clear. My vision improved. Some irregularities in my blood work went away. Am I sure that's all from the pm? No, but it's a heck of a coincidence. Our organs need oxygen, when we are in block and our rate doesn't go up as needed, it's hard on our bodies. Yes, we can compensate and get by, but it takes a toll. This is why now they give children diagnosed with av block a pm as soon as the day they are born. And these children thrive. I don't understand why drs see the need to treat babies and old people but say those of us in the middle can get by without.

Ok, real life limitations .... I spend about 15 min every 3 months with the tech getting the pm checked. I have an appt with the cardio once a year. I am on my 4th battery since 1994 and had a lead replaced a few years ago. It takes a little longer to get through the airport if they don't have a 3d scanner since I avoid the metal detectors. I can't have an mri, but that probably won't apply to you. I can't tour a power plant, arc weld, work at a junkyard with one of those big magnets, or play tackle football.

What can I do? I hike or ski every vacation. I do Crossfit 5 mornings a week, kayak and zipline every chance I get. I am a Girl Scout leader so regularly take a dozen teenagers camping or on whatever other adventures they dream up (like zipline, who knew I'd love it?! lol). No one sees me as a heart patient. It's important to me to stay active and to be in the best shape I can. I was born with electrical issues, it's up to me to prevent heart problems that we get from not taking care of ourselves by keeping my heart strong, and the pm allows me to do that.

Last thought, as you read the posts here keep in mind that many people come here because they have a rare complication and are looking for answers. It tends to make the odds of complications seem abnormally high. In reality, most of us never have a complication and for every one person posting here with a problem, there are thousands out there getting on with their lives.

If you have questions about the surgery, recovery or living with a pm, don't be shy.

Get the PM

by Theknotguy - 2013-12-09 04:12:28

I was doing OK but both my cardiologist and I missed the main problem. I had a SCA (Sudden Cardiac Arrest) and ended up with a PM on an emergency basis. A little problem of not being able to restart my heart in the ER. Anyway....

You'll feel better and be able to do more with the PM. You don't know how bad you feel until you start feeling better. And it's better to get the PM on a non-emergency basis.

Limitations: Probably won't be able to: Scuba dive, deep waster free diving, skydive, free climb rock climbing, shoot high powered rifles/shotguns on the PM side, do extreme weight lifting (moderate is OK, talk to people on this site), be a major league baseball pitcher, play tackle football, be a race card driver, play olympic volleyball, work at a power plant, be a radar repair tech. There are probably a few I've missed

Positives: You'll feel better and be able to do more because you feel better. You also have a backup heart monitor that will step in when your heart goes squirrely.

There was a discussion on this website about having a PM and doing welding. If your welder is newer than one made in WWII you probably can do welding with the PM. i.e. if you are so inclined.

Like I said, you don't want to get the implant under emergency conditions. As TraceyE said, you'll see a lot of things on this website that most people don't run into on a regular basis.

Other than the rehab I forget most times I have the PM.

Hope this helps.

Theknotguy

Get it done

by Jonny - 2013-12-10 04:12:17

It's all in the mind. You know you really want and need it but are reluctant because you might think it's for older people or have done tooo much reading on this site. There are many persons on this site even younger than you leading normal lives with a PM. After the 1st few weeks with the restrictions on arm movement and lifting weights, and possibly adjusting your PM settings then the rest of your life will hopefully be normal with the odd PM replacement every 6 to 10 years. I don;t think about mine for the vast majority of the time (it sometimes itches after a shower) and can't say there are any restrictions on what I did pre PM. I do have peace of mind that I wont have the dizzy spells and the one major faint I had before - that's a real comfort. Best of luck. John

Thanks...

by BHayes - 2013-12-10 12:12:17

I appreciate all the comments and encouragement. Jonny, you are correct in your statement that I know I need and want to go ahead and have this done to be able to lead a more active lifestyle and my age is not an issue. My research led me to believe that the inconveniences of having a PM would be minimal on my life and I just wanted to get some perspective from the people living with a PM to make sure that my thinking was accurate. This seems like a great group that I will probably learn to depend on greatly in the near future.
TraceyE & Theknotguy, I definitely do not want to let it go and end up in an emergency situation...but I have been considering how much better I will feel with a PM as I do not "think" I feel too bad yet....but I may be surprised. I just would rather not get to the point that I feel horrible before I make the decision, at which point it is no longer a decision.

Thanks again for taking the time to give me your thoughts!!

decisions

by Tracey_E - 2013-12-11 12:12:25

You definitely don't want to get to the point where the decision is taken out of your hands! It's nice to choose a surgeon, discuss your options, pick your time. And it's also kinda nice to not freak out your family when they get a call that you are in the ER headed to surgery.

If you struggle to get through the day, if there are things you want to do that you don't have the energy/stamina for, then it's time to do it. Don't miss out on life because you're tired. Too many people have chronic health problems that affect their lives, we're so lucky we have one with a fix.

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