My story

Hey pacer buddies,

Just wanted to share my story and opinions with everyone.

First my background.

I am a 25 year old male with complete congenital heart block. I had my first sub pectoral pacemaker implanted at 12 years old, a battery replacement at 21 and now currently sitting in a hospital bed for a battery and lead replacement due to a pinched ventricular lead waiting for my third surgery. Luckily my own heart rate is 40 and I managed to walk around for 3 weeks with an inactive pacemaker before I went in because something didn't feel right.

I am a personal trainer now but also a washed up hockey player who could've been but never was. Which basically means I was very good but blew out my shoulder at 21 and pretty much ended my career for me.

Now back to leads and pacemakers, my pacemaker current has 2.5 years of battery life. However due to my active lifestyle I have damaged a lead and since I'm pacemaker dependent it must be repaired ASAP.

I couldn't give you an exact reason why my lead is broken, it could be a combination of factors.

1. It's 13 years old.
2. I've been active my whole pacer life.
3. I started doing some olympic style weightlifting the past 3 months (front squats and cleans).

As an active guy and former athlete I'm not going to modify my lifestyle much due to this incident but thanks to you guys and my own research and now how I'm going to minimize the chances of this happening again.

1. I'm going to ask for a cephalic lead placement rather than a sub clavian. And have the subc lavian lead removed. (I'm worried it might get more damaged and actually damage the never in years to come).
2. I'm going to give up olympic lift variants that have the bar rest on the top of the chest and collarbone. But I can still back squat, bench press, pull up, deadlift, etc. I am a personal trainer so I have to practice what I preach. I'll give up 1% of exercise and enjoy the other 99% just to be safe.
3. I'm going to get the doctor to do a better job of securing the pacemaker because judging by the x rays, it seems to have migrated quite a bit.

I think doing these things will help minimize a recurrence of my current predicament.

I'm also going to get upgraded from a single lead pacemaker to a dual chamber pacemaker. Basically my cardiologist explained to me that since I'm so active I might as well have 4 cyclinders running rather than 2.

My current pacemaker is a dual sensor. A minute ventilation and accelerometer. It had a max heart rate setting of 185. This is the best they had 4 years ago. Are there any athletes out there that know of a better option? Speak up if you do thanks.

Most doctors tell me it's 6 weeks until I can return to my normal weightlifting routine. But I'm going to give it 8 weeks. No point of rushing back when I have no deadline to reach.

Anyways, I just wanted to share with you guys, feel free to share with and give your opinions.

Thanks

Jari


13 Comments

Well said

by C. Wynn - 2012-08-11 01:08:02

I to got my pacer @ a young age 15 . I have had it for 20 years . I feel if I hadent gotten it my life would be alot different , as for as activity level .I do beleave my pacer bettered my life .. Have a good day and hope everything goes well for you.

One more thing...

by Jari - 2012-08-11 01:08:33

To all the concerned parents out there who's children needs a pacemaker.

The pacemaker is the best thing that ever happened to me. Without it I would've been a inactive and unhappy child and adult. I basically got my life back at the age of 12. Sports are what I loved and was no able to do them.

Obviously there some sports I needed to avoid (Boxing, MMA, some positions in Football). But was able to play hockey, soccer, basketball, volleyball. And now as an adult; running and weightlifting.

I've learned the hard way of some weightlifting exercises I shouldn't do but that doesn't mean I'm going to stop completely.

Let your child get one... run, play, play sports, wrestle with them friends. Leads can break, pacemakers can move, but doctors can fix that. No point of not living a full life due to having a pacemaker. There suppose to help us not hinder us.

Just my two cents.

Rate response...

by golden_snitch - 2012-08-11 02:08:58

Hi!

Well, normally you would not need the rate response function if you "only" have complete heart block with a well functioning sinus node. And since you managed so well with a ventricular lead only, I would be surprised if you really needed the rate response; the ventricular lead probably just followed your sinus node rhythm. But then I don't know about your sinus node, maybe you just didn't mention that it's sick/too slow. With a simple, complete heart block and no drugs that slow the rate down, you don't need the rate response.

But to come your question on rate response sensors: No, there is nothing better than the MV/accelerometer combination. Boston Scientific still offers it, so does Sorin Group, but Medtronic no longer has this combination of sensors. Biotronik offers closed loop stimulation which is also supposed to sense mental stress and increase the rate appropriately, but the max. rate with that CLS switched on is 165bpm only. So, you better go for a pacer with at least 180bpm. Medtronic's Adapta can go as high as 220, but has an accelerometer only; probably still good for you because the upper tracking rate - which is important if you have a fully functioning sinus node - is 220, too, in most pacers it's only around 190bpm.

Best
Inga

Thanks Guys

by Jari - 2012-08-11 07:08:54

Thanks for the reassurance that I'm on the right track. I have been lurking for a bit and after reading several posts I thought I better get on board to get more info and to share some too.

Shoulder wise I had a reconstruction done and I'm 3 years post op. My strength is very good in it and my ROM is probably 95%. What ended my hockey career was the rehabilitation time (approx. 18 months).

I'm seeing one of the top EP's and Heart surgeons in Ontario (maybe even Canada) to have the lead repaired and new PM put in place. I'm going to discuss with them more but my local cardiologist thinks I'm on the right track. I'm definitely a rare case and my cardiologist considers me out of his league of expertise. So I'm thinking cephalic insertion, dual chamber, dual sensor, sub pectoral pacer is my best choice. We will see if they agree and what they end up doing. Surgery is this Friday so I will keep you guys updated.

Hi Jari,

by Gellia3 - 2012-08-11 08:08:04

You sound alot like me. I also have CHB and got my PM at age 26 back in 1975.

In 2001, I pinched my ventricular wire and fractured it. I broke it just turning over in bed, too. I actually felt it break. Luckily, my break was in a place that could use a connector, so it was easily repaired. Perhaps this will happen with you also.

When I was prep'd for surgery I was told if they couldn't repair the wire the entire unit and new wires would be placed on the opposite side. As I said though, they duct taped me together and I've been good to go since.

I also agree with Inga. I had my rate response turned off (thanks Frank) and felt SO much better as it was tossing me into a 2:1 block at 120 bpm.

I'm hoping your repair will be as easy as mine was and you won't have to worry about wire removals and cephalic veins.

GOOD LUCK and let us know how you are.
My very best to you,
Gellia

Hey Gelia

by Jari - 2012-08-12 03:08:41

Thanks for the words. I'm probably getting a complete overhaul. My lead is pretty much shot and only works in unipolar pacing right now. Which partly stimulates my pec and is not a long term solution.

Fortunately technology has improved greatly and lead extractions are done pretty regularly at the hospital I'm going to. They see no need to switch sides. I've been told I have "huge" veins and could jokingly fit 15 leads in the sub clavian if they had to.

I've never had a problem with rate response. I actually switched to a minute ventilation due to skating being to smooth of a motion and not shaking the accelerometer well enough to increase my heart rate to the level it needed to be. I've never been naturally able to get my heart rate as high as I wanted it to be.

I'm seriouslt considering just going with an accelerometer again with a higher max heart rate. Since I only play hockey recreationally now, I'm more into running, weight lifitng and indoor rowing, which would probably be detected by the accelerometer pretty easily. It's just a discussion I'm going to have to have with the specialist when I get there and weigh out the pro's and cons of each.

I'm kind of funny in a way. Most pacemaker recipients are just worried about increasing quality of life, while I think about increasing overall performance. Guess that's what happens when you think of your heart as your motor. Which it is I guess.

Accelerometer only

by golden_snitch - 2012-08-12 05:08:17

Hi again!

If I were you I'd probably also go for accelerometer only, but higher upper rate limit. The thing with the dual-sensor is that, if you have both sensors switched on, one of them will take the lead. In my pacer that is the minute ventilation sensor, and that can't be changed. So, if you do some kind of activity that does not really increase the minute ventilation, but is otherwise associated with a lot of upper body movement for instance, this sensor will slow the whole rate response down. It kind of "cross-checks", and if the activity is not triggering both sensors equally, the response will not be appropriate.

Have you already asked about removing the old lead? Just thinking that since you said you have huge veins, and you so far have only one lead in and will get two more, the doctor might very well say that there is no need to remove that old lead. I mean, it's 13 years old, so removal, even if the team is skilled and experienced, might be tricky and risky. A friend of mine just had surgery in which it was planned to remove two leads - otherwise she would have had five in - which were not even ten years, and it did not work out. Surgery took six hours, and in the end the surgeon had to give up.
Oh, and they think her leads broke because in her special cardio training for patients with heart failure, they had her do lots of exercises for the chest and arm muscles. When she showed the surgeon these exercises, he screamed out loud: "But you can't do that with pacer leads in!" Well, turned out that several patients in her rehab group had broken leads...
My atrial lead broke after barely eight years without any reasons like that. But in my friend's case the exercises seemed to have done some damage, and she is now forbidden to do them.

Best wishes
Inga

Hey Inga

by Jari - 2012-08-12 11:08:21

I've been doing a lot of hard upper body exercise for a long time without any problem. My problem really has seemed to arrive when I started doing Olympic lift exercises where I hold the bar across my collarbone. I'm going to stop doing these lifts and go back to my regular routine and I should be fine.

I'm pretty muscular, 6"6" and 260 pounds and a pretty low bodyfat. Perhaps my pacemaker leads have more padding because of this. Who knows but I'm not going to baby them. Maybe it will break again in 13 years. Who knows. All I can really control is my recovery time.

I've done a lot of research and my cardiologist believes this as well that cephalic vein access would probably be best for me. I could still probably Olympic lift afterwards but mentally I don't think I could do it.

Sorry for your friends unfortunate luck but here's my view on the subject. There has literally been thousand and thousands of successful lead extractions, like anywhere there will be a few unsuccessful ones, but I don't think that should stop the doctors from trying. I'll be sleeping the whole time so what's the difference to me how long it takes them?

If I break a lead I'll get it fixed. Its an inconvenience but I didn't stop playing hockey when I was younger because there was a chance I could break a bone, which I did several times.

Will keep you guys posted,

Jari

Surgery Tommorow

by Jari - 2012-08-16 08:08:46

Meet with the EP, Going to put in a biotronik with the close loop sensor. I'm also going to get a dual chamber with atrial lead and that should improve my performance. I'm completely pacemaker dependant and this will be the best type of rate response for me he thinks. And he's been doing this for a long time. From research it's suppose to have a longer battery life and is a bit smaller than your average pacemaker. But we will see what happens once it is in me.

There going to go subpectoral again and remove one of my old atrial leads that has worked its way out of my vein and into soft tissue. The ventricular lead will be left in place due to the size of my veins and it being unnecessary to remove it at the present time. They will also be going through my cephalic vein to prevent future lead fractures.

Time off work will be 3 weeks and I'll be returning to weights after 8 weeks. Wish me luck.

Jari

How did it go?

by cra1970 - 2012-09-03 12:09:27

I've been following your post pretty regularly, and I'm wondering how the surgery went for you?
I also like to lift weights, and I'm always worried about breaking a lead. My doc also told me no hockey!
Hope all is well,
Christi

Surgery went well

by Jari - 2012-09-13 01:09:19

Sorry for not letting you guys know how I did. I got turned off by the site due to some posters attitude towards having a pacemaker and no matter what people posted that there problems were worse than others. Also it's very frustrating when posters just want confirmation Of there beliefs rather than others opinions.

Also to be honest. I'm too busy living my life than sitting around and thinking about my pacemaker.

Overall the surgery was a success. They were able to remove my old leads rather easily and give me two new ones with zero history of failures or recalls. I was given a new sub pectoral pocket because my old one was my when I was 12. Since i grew a foot and a half and doubled in body weight my old pocket was too lateral and wouldn't secure the pacer long term.

They were unable to use my cephalic vein because it was compromised during a previous shoulder reconstruction. But my subclavian is so big they are not concerned whatsoever with clavicular crush.

My only restrictions after my surgery is to not do front squats any more or any exercise that would rest a heavily loaded bar on my upper chest. I can return to my normal lifting routine after 12 weeks. No weights for the first four weeks, light lower body lifts for the next four weeks and then light upper body and regular lower body from weeks eight to twelve. I'm thinking I might stick to push ups as my soul chest exercise for 3 months as well just to allow everything to heal up and scar up nicely.

I've never allowed myself to be restricted because of would could happen. If weightlifting wears out my lead after 15 years than we will replace it. I don't not drive my truck to work cause I might get into a car accident. I've learned the hard way not to do front squats but I've already set a new goal of 600 pounds in the back squat.

Life is what you make it.

Nice!

by cra1970 - 2012-09-15 05:09:16

Glad things went well for you. I used to do front squats occasionally, maybe I will reconsider that. Have you ever tried Zercher squats? That could be a nice alternative...
Will you return to playing hockey?

....

by Jari - 2012-09-17 11:09:38

Will probably start skating in November or so and start playing in a men's league once I feel comfortable doing so. Not in a big rush to play hockey again since I don't play competitively any more.

I'm not a huge fan of zercher squats but I will always do back squats, split squats, safety bar squats or any other form of squat I can think of that won't involve a front rack position.

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Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.