Still in a dilemma!

After my posting under 'Pacemaker or not that is the question' I have still not decided whether or not to have one fitted. I have found everyone's comments useful and I did meet up with another lady with a pacemaker who runs and after having a good chat I do feel more positive about having one.

As those of you have read my previous postings you will know that I only need one if I want to continue with my running. My question to all of you who run/exercise etc is - after having the experience of having a pacemaker if you only needed one to run/exercise would you still have one fitted to enable you to do so, or would you give up the running/exercise and be pacemaker free?
Look forward to your comments.
Pammy

15 Comments

Good Question

by IAN MC - 2013-08-10 01:08:10

....and you know, Pam, that only you can answer it

It really does depend on how important running is to you.
The downsides of having a pacemaker are minimal ..a minor op , followed by 5 or 6 weeks of sensible recovery precautions and then normal life, hopefully allowing you to run marathons again,

Assuming that your Dr is right, and that it will solve your problem, then I would definitely go for it because, otherwise you will go through life full of regrets that you can't run.

Let us know what you decide ( I may private message you because I have further ideas on the dilemma that you are facing )

Ian






Pacemaker for running

by golden_snitch - 2013-08-10 02:08:27

Hi Pammy!

If you decide to get one, go for a pacemaker with a mode switch from AAI DDD. There are pacers that will pace you out of every single heart block, and there are some with this mode switch (for instance Medtronic Adapta or Sorin Reply DR) that will only pace your ventricles when you hit a certain number of heart blocks within a certain period of time. It's not bad for the heart to endure a single heart block = skipped beat every now and then. If you don't have the mode switch, but only a fixed AV-delay (time your AV-node gets to do the jobs on its own) you'll very likely end up being paced more than necessary. That won't do any good. The more you pace in the ventricles, the higher the risk of developing heart failure or atrial fibrillation. And since you need the pacer only when you run, you'll definitely want to avoid any complications from being paced.

I know that most people here believe that the pacemaker will only work when it really needs to. Most doctors will say so, too. They're "on demand" pacemakers. But the thing is, as soon as the device is in and if you do not do a very careful optimization of settings, it'll pace you at times when it's not absolutely needed. When I had intermittent heart blocks and my pacer was in a DDDR mode, without mode switch, I'd be paced around 40% of the time; with mode switch on, I was down to being paced 1%-5%. This special mode switch has been developed because it was found that people with their pacemaker programmed in DDD with a fixed AV-delay are paced much more than needed.

So, if you get the pacemaker in order to be able to continue running only, then make sure it is very carefully programmed so that it really only kicks in when you exercise and your heart rate gets to, I think you said, around 150bpm. Oh, and if you only have single heart blocks occuring when exercising, not several in a row, I'd probably go for a second opinion to make sure that this really is a problem when running. Like I said before, single skipped beats, even if you have several per minute, are not that bad and not a clear indication for a pacemaker. You never said that you were symptomatic with those skipped beats, only that your cardio told you that you'd need a pacemaker if you want to continue running. If you're not symptomatic, I'd challenge that statement and have it confirmed by at least one more cardio.

Best wishes
Inga

That Really Is A Good Question!

by Many Blessings - 2013-08-10 02:08:30

Hi Pammy,

That is a really good question for everyone. It's such a personal decision, and everyone has to make the decision that's best for them.

For me, like others out here, I'm 100% dependent & paced, so it was not an option for me. This was due to being born with multiple heart defects, and progressive heart damage from years of various heart surgeries and heart conditions. If I wouldn't have had one put it, I wouldn't have made it another year. And, even then, I waited until I absolutely had to.

Looking back and wondering if I would have done it again "if" I would have had a choice, and it was strictly for running and exercising, in all honesty, I would have to say no.

There are pros and cons to having one, and it probably depends on what brand and type of device you get, how many leads you have, what the underlying issue is, what the PM is doing for you, and what other heart conditions you have.

One thing to think about: If your PM will only kick in while you're exercising or running, and they're not ablating the AV Node or doing any other procedure or surgery that will make you 100% dependent, then you probably would have the option of turning it off if you didn't like it (hopefully, others out here will correct me if I'm wrong.) Again, that is something to think about.

Wait to see what others have to say. Take everything you read, and any research you've done on the subject, and make the best decision for you!

Good luck and let us know what you decide!

A hard question

by ma_ku - 2013-08-10 03:08:00

Hi,

I only needed my pacemaker when at rest as I didn't have any symptoms when I ran. So the opposite problem!

As a keen runner myself I know how hard it is to keep your heart rate under 150 (the rate you mentioned in your previous post) when running uphill at pace etc.. Who wants to run slower when you want to run faster and feel good!?

Would I have had a pacemaker if I needed it ONLY for running. That is so so hard to answer as I love running almost as much as I loathe this lump of metal under my skin. (As you can probably tell, I am still not mentally adjusted to this new reality - implant was in February this year).

I can and do still run. The pacemaker does not seem to have impeded my performance but I am less willing to push for personal bests anymore (at the wrong side of 40 that's probably for the best in any case). I ran a few fast times in the couple of months after the operation, but have since decided to dial it back a bit. I do still get my HR up to 180 occasionally when kicking up hill etc, but less often.

In all honesty, where I am now, I would probably say I would not have had the implant if I needed it ONLY for running. I would have rationalised the decision and taken up strolling with a dog instead :-) I really hate this thing inside me and would rather be pacemaker free.

Yes I know it is potentially keeping me alive, but I haven't reached the acceptance phase yet really. Bear in mind that this is just my opinion at this time and place in my life (having tugged a few beers on a Saturday afternoon). Please don't base any decision on it.

The reality is that my condition (2nd degree heart block) is often progressive. So even if I had delayed, the choice may have been taken out of my hands if I had suddenly progressed to 3rd degree heart block, fainted while driving etc. etc.. Best case, I would have woken up with the pacemaker. Worst case, I could have run down a child whilst passed out behind the wheel (and woking up to that news AND a pacemaker inside)..

You can get a very good workout at 150 regardless but I do understand the notion of being limited to this being unappealing. I don't envy you your decision.

Best wishes

Mark

Don't do it (if you don't really need it !)

by Duke999 - 2013-08-10 03:08:35

Hi Pammy, my opinion may be different from many others on this site, so I'll make it as short and simple as I can. DON'T DO IT !
Having a metal thing inside your body is not a piece of cake as many people tell you.
Let me tell you a little bit about my situation. Unlike you, my cardiologist recommended and hurried me into having a PM implanted and I regretted that I didn't get a second opinion or resolve my heart problem on my own without the PM. I jogged a lot before my PM. One day, I started to have PVC's which I didn't know what that was at the time and scared the heck out of me. My cardiologist suggested that I have slow heart rate (bradycardia) problem, but most of us who jogged/run a lot often have slower heart rates than others. I felt that the slow heart rate was not my problem. Now, looking back, I know it was the darn PVC's episodes that were bothering and NOT the slow heart rate. Anyway, as stupid as I was because I didn't know better, I gave in and had my PM implanted. So, does it resolve my PVC's problem which I had before the PM implanted? NO, it resolves NOTHING!
Let me say this: The PM may be needed by many patients on this site, but your problem is too small to get a PM. Once you have this thing in your body, it will change your life forever and perhaps not for the better.
I'm now 5 months into this PM. Is my life better?
NO. I can't give people a good hug because it hurts, I can't sleep on 1 side, I can't get a massage and if I play any sports, I have to constantly be very careful, the car seat belt is really bothersome. You will live your life with limitation that's for sure. So, after the PM is implanted which helps nothing for me and made my PVC's worse besides the pain of where the surgery is, I had to resolve the arrythmia (which means irregular heart beats) on my own. I did that by taking magnesium which I could have done this without having a PM in me. Now, about your problem. Like I said, from what you describe, your problem is not a problem at all. I suggest you should explore the magnesium mineral or balance your minerals/electrolytes. It might solve your situation. But, please don't get a PM IF and IF you don't really need it (especially, even your own cardiologist doesn't think you need it). I'm sorry that I'm writing such a long post, but if you have more questions, you can send me a message. THINK HARD ABOUT IT.

I would do it

by Tracey_E - 2013-08-10 04:08:09

Only you can decide what's right for you, and in your case I don't think there is a right or wrong choice. I believe I answered when you asked before. I intend to stay as strong as I can for as long as I can so yes, I would absolutely choose to be paced if it meant I could continue to exercise as much as I want. If you can continue to run but just not run hard, then maybe try that for 6 months and see how you feel, see how fit you can stay without the pm. If you are happy with your condition and feel good, then put it off a while.

If they think you will eventually need the pm anyway, I'd probably get it sooner rather than later so you can maintain your condition, but that's just my opinion. Once we lose condition, it's so hard to get it back.

It's not the same thing, but the decision is similar... a few years ago I was struggling to exercise hard. I could do a light workout (hr under 140-150) but not a hard one, atria would take off racing faster than the pm could pace. A beta blocker was the answer, no more racing but it comes with side effects and I hate the idea of being on meds for the rest of my life. I can't work out hard without it, however, so after two years of trying to work around it or find other answers, I chose to take it. I intend to do everything I can to stay as strong and healthy as I can for as long as I'm able. For me now, that means the pm and the beta blocker. Not ideal, but imo it's better than not being able to stay in shape.

No

by Minnesota - 2013-08-10 04:08:55

If you do not need a PM to live, my opinion is do not get it. Running is awesome. But I would prioritize my health and living well above it. I am 8 weeks PO implant of my first PM. I have bradycardia. I am still recovering from the trauma of surgery. Surgery carries its own risks. Especially heart related. For some reason I developed tachycardia during surgery. It was finally resolved several hrs later but not before I almost fainted during a walk down hospital hallway. I am now fighting an infection at the site. On Thursday my doc scheduled surgery to remove PM. Then I would be battling the infection (which wasnt responding to antibiotics). Then after i was stable i would have a new implant in right side! On Friday during pre-op tests the doc noted a 1cm reduction in size of infection. He hadnt seen it for about a week. This was hope enough the infection might be responding. So less than 24 hrs from when I was to have my PM and leads removed I was spared. We do not know if the antibiotic will be 100% successful so we are treating and hoping thru another round of antibiotics. I am an otherwisely healthy active woman. Only problem was the slowing of my heart rate which finally required a PM to keep me safe and healthy. I would never wish this on anyone unless like me they had a medical necessity. I would give up anything on the planet if I did not have to have a PM. But because I need one I am eternally grateful it is working. But the chances of infection, PO problems, constant worries, uncomfortable placement, etc. are not worth implanting if it isn't medically necessary. Seriously - knowing what I know now- if I were in your shoes I would never choose a PM to be able to continue running. Never.

Even in more of a dilemma now!

by PAMMY - 2013-08-11 03:08:53

Wow - what a mixed bag of comments! Thanks to all who have contributed with your experiences and views etc. However I really am undecided now. I was on the over 50% going for the pacemaker option but now it has dropped to under 50% As everyone keeps advising me it will have to be purely my own decision but i wanted to get all aspects clear in my mind before I make that final decision. I'm just worried that I may regret it if I decide to have it as it is irreversible. However, if don't have it I will always be wondering if I could now be going out and running races again. I think I'll just toss a coin!! I will await to see if I get any further comments from anyone else and will let you all know what I eventually decide.

Ian - I would appreciate a private message from you as indicated as i would be interested in your further ideas.
Thanks.
Pam

A chance to live

by Mario - 2013-08-11 04:08:49


This comment was performed with the Google translator, so apologies if this writing thing is not achieved understand.
I have 53 years and am a carrier of PM for the last three months. Throughout my life participate in sports competitions, races of 10 km and half marathones triathlon competitions besides, paragliding and biking route. My problem arrhythmia and bradycardia was detected for 8 years and was a candidate for the PM, though at that time I placed an MP since I was asymptomatic, and all subsequent years I was subjected to controls with a holter test. In this year I detected a high arrhythmia. I initially said they had to fulfill myself electrophysiological study, mapping and ablation, but if that was not needed to place you the PM. This happened and now I have that device, is bicameral Metronic FITS'm ADDRO01 total dependent as I have a mouthing in the atrioventricular node. The pulsations are normal in 60 and high for exercise are at 150. I can go back to running and practicing my exercises without problem, despite the fact that I have evidences the persistence my arrhythmia and amiodorona and warfarin therapy, I hope to improve soon. Now I enjoy life, my family and I am returning to my normal physical activity, I'm happy, sometimes I forget that I have PM. The positive attitude is very important. I believe that God gave me another oprtunidad of life and I have to live intensely with enthusiasm and appreciation for that reason.
Best regards











Really?

by Minnesota - 2013-08-11 09:08:08

If you do not need an artificial device implanted with leads into your heart chambers- do not do it. You will always be at risk for an infection in your heart - bacteria love artificial devices. An exposure to bacteria , say through dental work, could ignite a cardia bacterial infection. Your heart would be a sitting duck. Why would you risk it? To run? I love to run. But I had to give it up. Guess what? There is life after sacrificing something you love. You might not be able to see it now but trust me. There is so much more you can do, try, enjoy, etc... I can not believe you would even consider implanting an artificial device if you did not need it medically. The risks involved with having it implanted, avoiding injury or infection, replacement and caring for it the remainder of your life are so much greater than the lifetime of running. You never know how long you can run. Injury, age, etc. might affect your running as you age. There are many other activities that you could find satisfying. If I did not have to have this in my chest I would give up anything. You really need to figure this out- I can't believe you are even considering it .

Don't do it (continued)

by Duke999 - 2013-08-12 04:08:32

I repeat LOUD: Don't do it.
You mentioned your problem doesn't happen all the time, and only certain time when your HR goes beyond 150. Heck, you still can enjoy plenty and all kinds of exercises including running with HR under 150. Also, keep in mind, that PM will not solve the problem of pauses. So, don't dream that the PM will solve your pauses problem.
You also mentioned that your cardiologist thinks that may be 10 years from now, you might need it. Then, please enjoy your life without this darn metal thing in you for the next 10 beautiful years of your life. Why hurry to put your self in this miserable condition? There are so many limitations when you have it. It's NOT a pretty reality as someone is trying to sell you the idea to have it. You have to constantly watch how people touch you or hug you because it HURTS, you just can't pick up and travel because you have to plan for it, you have to continously go back to your EP for check up because they need to know how the PM is doing (battery, etc), you have to get it replaced (another surgery) every few years once the battery is depleted, and there are many more hassles to mention here including other private matter hassles. I would trade millions of dollars to be in your shoes. It's NOT a dilemma. The pacemaker is a last resort for someone who REALLY needs it with certain condition only. It's not a joke to have it. 3 million people out of many billions of people is a very small number, and most of them don't know about this site and perhaps a lot of them are non-English speaking, so they can't tell you how miserable it is and perhaps a lot of them are not doing well to be on the computer to tell you NO, DON'T DO IT.
I sound like I regret or am angry with the PM in me?
You bet I am.
I said enough. I'm done here.

Good luck.

Hang on Duke !

by IAN MC - 2013-08-12 05:08:58

I don't mind opinions being expressed on here but not when facts are totally distorted . To say that the " PM will not solve the problem of pauses " is nonsense,

Cardiac pauses caused by a sinus node failing to generate an electrical impulse is one of the commonest reasons for having a pacemaker . I had cardiac pauses, as did many of the people on here ; now that I have a pacemaker...no more pauses !!

If you get something as fundamental as this totally wrong why should Pam believe anything that you say ??

I simply cannot identify with most of what you have written.My pacemaker NEVER hurts regardless of hugs.

I certainly don't regard it as a " damn metal thing " . I regard it as a something which allows me to lead a normal life.

Ian

Risk

by IAN MC - 2013-08-12 06:08:32

Someone once said they wouldn't go out running in case they got hit by an asteroid !

Whilst I appreciate , Minnesota, that you have had infection problems following the implant , whilst being unfortunate, that really is very very unlikely to happen. Do people turn down hip replacements in case they get an infection ?

There are well over 3 million people with PMs now . Why do we not have them all in the PM club... simply because the vast majority never encounter any problems. I'm not by any means saying that having a PM is not without any risk BUT if running is a VERY important part of Pam's life then she may be willing to accept the level of risk to be able to continue with the love of her life.

Ian

Take your time

by OhioBob - 2013-08-13 05:08:28

Pam,
You certainly know how to get a conversation going! My advice for you is to take your time. A second opinion from another cardiologist could be valuable. As I shared before, I also am a runner, and have the same symptoms as you, just progressed farther than your condition. After seeing one cardiologist who wanted to do an ablation (which didn't make sense for my condition), I got a second opinion. My current cardiologist suggested that a pacemaker could be one possible solution, but quickly added that it wouldn't be ideal, and that the programming would be difficult. He basically said he would only give me a pacemaker if it became medically necessary, or if my quality of life deteriorated to the point where I demanded one. The interesting thing is that I feel that my body is starting to compensate when my heart goes into AV block, and the nature of the block is changing also. It is doing more 3:2 block than 2:1, and I can maintain a reasonable level of exertion, even when operating in "block mode." I haven't tried running for about a month though, so I certainly have scaled back on my previous level of exercise. I'm not sure where this will all lead, but I guess I am trying to suggest that you may want to wait a while and see what happens. Of course if you start having fainting spells or other negative effects, then you would need to make a decision quicker. I understand your dilemma though, and will try to post updates on what is happening with my condition.
Best wishes,
Bob

Nice to know

by PAMMY - 2013-08-18 05:08:27

Thanks RunBikePacer it's nice to know that someone else does have a similar condition and has had the pacemaker and it has helped.

Having read some of the comments above it does worry you a bit - I've certainly started a few arguments about what is the right thing to do.

I'm grateful to everyone's input and i have to agree with Ian and Tracey that it seems to be only a minority of people who have problems with their pacemakers.

My other concern has been it I don't have one fitted I would worry about doing other things other than running such as walking up Snowdon (the highest mountain in Wales) which I have done on a fairly regular basis. Especially now as if something did happen to me because Prince William is finishing his stint with the RAF rescue at Anglesey (in Wales) so he wouldn't be the person rescuing me from the top of the mountain!!
Pam

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