Needing pacemaker at 35

Hi I'm new to this group, in fact new to all of this!
Found out yesterday that I need a pacemaker I'm 35 and scared to death! After fainting and feeling faint and having palpitations I've had all the tests and my 24 hour monitor picked up skipped beats twice in the evening. The cardiologist said if I was older it would be an immediate pacemaker. He's decided to put a 7day monitor on , if nothing picks up then have a loop recorder fitted. But because of what the monitor already picked up and I'm feelin faint more often it looks likei will need one.
I'm terrified, just want reassurance and to hear other/similar experiences. It's bothering me that he doesn't know why and I'm scared I'm just going to drop dead! I forgot to ask if I would !! Thanks Sasha

8 Comments

It will be okay

by Bean19 - 2014-12-03 01:12:15

Breathe Sasha, just breathe. The only reason to be terrified is that they are prolonging things and you may hurt yourself when you faint. I'm 39 and am two weeks out from my pm surgery. I was not excited about getting a pm but look at it as a solution to a problem. I was wearing a heart monitor recorder for two weeks and (thanfully) it caught my 15 second pause. I was a passenger in the car on the way to the grocery store and couldn't hear my kids calling out to me but came back to my husband shaking my arm yelling hon wake up!

You will be fine, more than fine and won't need to worry about the fainting or skipping of beats. Let the people on here be your shoulders to lean on. There are a bunch of us around this age who have received pm's within the last few weeks/months.

My doc found that I had a very toned vagal which was allowing my heart to take breaks, which obviously isn't a good thing. I have zero problems with my heart structure and no family heart problems. It is an electrical issue with no known start. I'm just glad that at least I had fainting spells to show me that there was a problem.

Best of luck-you are and will be wonderful and healthy! Just remember to keep breathing!

I HAVE BEEN WHERE YOU ARE

by Runningmama - 2014-12-03 02:12:00

I am 34 and were exactly where you are about 6 weeks ago..hard news to hear...I run, am extremely fit, and so young, etc so what GIVES????

I got my pacemaker a month ago this Monday. My episodes started kinda the same way I guess, dizziness, heart drops, etc...Turns out I have stage 2 sometimes 3 type 2 heart block, intermittently. Hit me like a ton of bricks!

But fast forward, I am back to my complete normal routine and feel great, no more dizziness, episodes, etc. Started having my workouts again this week, going well. I have a leadless pm though, so I don't have to worry about pulling leads out...

The PM takes care of our physical symptoms, the mental is up to us (and believe me- the panic attacks I had leading up to the surgery needed their own paychecks, they were bad).

But believe it or not, since the PM has been in, my anxiety has gotten better. I just had to knuckle up, put one foot in front of the other, walk in the operating room, and get it fixed...glad I did!

Good Luck and keep me posted on how you're doing.

Surprise!

by Theknotguy - 2014-12-03 03:12:55

It's really a surprise when life throws you a curve ball. There you were, going on with your life, and now you are going to get a pacemaker. Welcome to the club. Although I'm sure you don't feel like joining. For some of us (like me) we woke up in the hospital with a pacemaker so we didn't go through the pre-pacemaker angst.

Since I was unconscious, I can't tell you about the PM procedure and implant. I missed all that. Will let others fill you in. However it isn't major surgery and you should get on fairly well.

Post PM implant you are not supposed to lift the arm on the PM side above the shoulder. It is suggested that you are not to lift more than 10 pounds (about a gallon of milk in the US. About three liters of milk in the UK - I think) with the arm on the PM side. Time for those restrictions are 4-6 weeks after the PM implant. Some doctors will tell you four weeks, others are more conservative. Reason for the restrictions are to allow the PM scar to heal and to give your body time to incorporate the leads going into the heart. Don't worry, you'll forget and do something you aren't supposed to. It probably won't hurt anything so just don't make it a habit. You will want to keep the arm moving but light exercise only. If you don't move the arm you can get a stiff shoulder and that has to be worked out with more exercise. After the 4-6 week period you can concentrate on going on with your life.

If you look through this forum you'll see people with PM's leading pretty normal lives. The fact they have a pacemaker hasn't made a difference. In fact they probably wouldn't be able to lead their "normal" lives without the pacemaker. For me, I can do 99.999% of what I did before I had the pacemaker. So having a piece of metal a little bigger than a 50 pence piece inside you shouldn't slow you down. We have people with PM's on this forum who are swimming, skiing, scuba diving, weight lifting, running, biking, doing triathlons, and running marathons - so you can do most athletics. In fact you'll probably feel better and start doing things you weren't able to do pre-PM.

While your body heals and during the first six month period you may get all sorts of weird feelings. That's normal and it is usually the body 1) healing, 2) adjusting to the PM. For example, I got pain going up into my left jaw. No big deal, body just healing from having the leads put in. Because they had the voltage set high at first I could often feel when the PM kicked in and initiated a beat. If you do have problems with your PM that require medical attention, you'll usually feel sick enough to go to the ER and have it checked out. If you aren't sure it's always best to check with your EP / cardiologist. You can also post a question on this forum. If you feel badly, are worried, you can always go to an ER and get checked out. Nobody dies from embarrassment. So if you're wrong, you're still OK.

Electrical equipment, security scans, radio/TV transmissions aren't usually a problem. If you look around the forum you'll see people have traveled without problems. Airport security isn't a problem with the newer PM's. There isn't any electrical equipment in the house that will bother the PM so no worries there. I regularly travel by TV transmitting towers with absolutely no effects. So you don't have to worry about any of that with your PM.

Misinformation about PM's is rampant. I feel about 80% of information given to me about PM's was inaccurate. So one of the things you have to do is to sort out the misinformation from the facts. Unfortunately a lot of the misinformation comes from the medical industry and they should know better. I'll give you some examples: Can't be in a room with a running microwave oven - wrong. You'll set off alarms at the airport - wrong. You'll set off alarms at store security - wrong. Store security will affect your PM - wrong. Your car remote will affect your PM - wrong. You aren't supposed to lift your arm on the PM side above your shoulder - for the rest of your life - wrong. You can't use your cell phone on the same side of your body as the PM - wrong. Refrigerator magnets will affect your PM - wrong. Amateur radio transmitters will affect your PM - wrong. TV transmission towers will affect your PM - wrong. Electrical motors like a chain saw motor will affect your PM - wrong. A lady died going through airport security with a PM - never proven. Oh, and my favorite, PM's can be hacked. Good story, never happened. So theoretically PM's can be hacked but I think it's more likely I'll get struck by lightning. Like I said, a lot of misinformation.

MRI's are a concern. But with the newer PM's a lot are rated for a MRI. Your leads have to be approved for MRI too. But a lot of doctors are using the MRI compatible equipment anyway. Just ask before you get your PM.

What is the best PM? Good question. My EP does about 1/3 Medtronic, 1/3 Boston Scientific, 1/3 St. Jude. There are other makes and models out there. Some are better for younger people who need a faster response due to athletic activity. Others may be better for specific heart problems. You can ask your EP and see what they feel is best for you.

Just about all PM manufacturers have had a recall. It's a very small percentage so, while it can happen, probably won't. There's also a tiny percentage that have problems after insertion. In the year plus I've been on this forum I can only think of two that have been reported by PM owners.

Post PM you can look forward to a healthy life doing things you'd like to do. No worries.

Hang in there. Life gets better!



Wow Thankyou! :)

by Sasha - 2014-12-03 05:12:37

Thank you so much for all of your comments, really do feel better so thank you.

The whole process is taking forever , I fainted back in July during a Zumba class (so embarrassing) and scary, have never fainted before. In the last 3weeks I've felt like I was going to faint and 3of those times I've been sitting down, I've also been getting slight pain in my chest never lasts longer than 5mins.

The appointment yesterday went so fast and there's loads I wish I had said that I didn't, or ask, suppose I was in shock! The doctor seemed unsure himself as what to do, decided to go for the 7day monitor and said if picks anything up will be a pacemaker, if doesn't pick anything up then will be the loop recorder?! But at the end of the day will be having one so like you say TraceyE why not get on with it!! My husband said the doctor wants to try and find out more before he goes ahead. The two times my heart skipped on the monitor I hadn't recorded that I felt faint/dizzy, I was at work and felt fine?!

skips

by Tracey_E - 2014-12-03 05:12:47

Little skips can happen and we don't always feel it. If all you had was short little skips, it would be something to monitor but not treat. I forget the exact number, but it's around 5 seconds when they go from something to watch to something to worry about. That's part of why the monitors are great, they tell us about the things we don't feel. If you are having regular episodes, plus others the first monitor picked up that you didn't feel, one week should be all you need to figure out what's going on.

Good luck!! If you have questions or just want to chat, you know where to find us. Or feel free to private message me.

Dont worry.

by seenu302 - 2014-12-03 11:12:51

Sasha,I was in the same boat last year. I was 39 and found out that my heart rate was in lower 30's. My doc told me that I dont need a PM since I did not have any symptoms but kept on regular checkups. This year they found Atrial flutter and decided to put the pacemaker last week before thanksgiving. Its not scary if you are prepared for it.Its a safe procedure and being done on lot of people of all ages on a daily basis.Having family and friends support definitely helps but you need to be strong mentally and trust that docs will do their job. Hope this helps.

Thanks
Sri

diagnosis

by Tracey_E - 2014-12-03 12:12:19

One thing jumps out at me... if you were older they'd do the pm now. That's one of my big pet peeves!! If they have enough of a diagnosis that they'd give an older person a pm, why put you off and and put you through more testing? Age has nothing to do with need. Some drs hesitate simply because of our age but that doesn't make any sense to me. Why suffer and put yourself at risk when there's a fix?

No, you're not going to drop dead! If that was a possibility, you'd already have the pacer. What you might do is faint and hurt yourself, which is why I would question again bothering with more tests when you already know your heart stops long enough for you to pass out.

Unfortunately most of us never find out why, but why doesn't really matter because it doesn't change the fix. Electrical problems just happen, they're usually isolated and happen in an otherwise healthy heart. There are no drugs that will fix it and these problems don't go away on their own, the only fix is a pm. I know that's probably not what you want to hear! I'm sorry to be so blunt but I hate to see people stressed out over more tests, risk themselves passing out again, all when the end result is likely going to be the same. 7 day monitor isn't a big deal but I would definitely have a serious discussion about the loop recorder. If you were having short pauses without symptoms then it would be appropriate but you are not asymptomatic and you already have confirmed pauses. Putting in the recorder is a surgery very similar to getting the pacer. Why not just get it fixed and move on with your life. Just my opinion, ymmv :)

It seems scary, esp when it blindsides you, but most of us find that the surgery is easier than we expected, that we come out of it feeling better than before, and after a while, most of us move on and forget it's there. I got my first one at 27. That was 20 years ago. I am healthy and active, it doesn't hold me back at all. If you have questions or want to chat, don't be shy. There are a lot of us here who have been through it and came out the other side feeling great. We will help you however we can.

A wager !

by IAN MC - 2014-12-03 12:12:20

hi Sasha I see you are from the UK ..welcome to the club.
There are lots of us PM-implanted Brits on here !

I would like to second every one of Tracey's comments . In fact I bet you one thousand pounds that you don't drop down dead ( and I never make rash bets ! )

Let us know how you get on

Ian

You know you're wired when...

You always have something close to your heart.

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