Tweaking the device

I have been back to playing hockey for three months and I still am having issues. I've had my device tweaked twice already. The first time they lifted the "governor" for 150 to 180. That helped to some degree. But I was still getting fatigued way too quickly when I played. So, I went back for a 2nd consult with the MFG rep. He seemed to know exactly what I was saying. Things seemed better the next time out. But now I start out strong and then go down hill as time progresses. Even when I'm resting between shifts, I don't seem to recover. It's almost as if my device doesn't calm down enough to let me recover. But the end of my time playing I start to see stars and get headaches (obviously not very good and seems to be an oxygen issues). I'm so frustrated by the performance of my device. Maybe it can handle a consistent activity like running, but it doesn't seem to be able to handle the rapid burst required in an activity like hockey. I wonder if anyone has thoughts on this. I'm 55 and in great shape otherwise.
*
A side note. They say don't use a chain saw. Now I know why.

7 Comments

Exercise

by roballen46 - 2014-10-02 06:10:24

You are 55 and I am 53 and love basketball. I tried to play like I use too. I started out strong but went down hill fast. The recovery lasted for a few days. Remember that we will have to start slow and work are way to our top performance. I am just saying, we are not like we use to be. We are trying to play the sports with a pacemaker. Take it slow and work your way up. My burst is 2 minutes at a time. My youth friends can go all day. Can you please post your comments on my forum. www.congestiveheartfailure.club. My forum is new...

Keep getting tweaked!

by SaraTB - 2014-10-02 07:10:40

Two adjustments so far? It took me 6 months, with a re-adjustment every 5 weeks or so until I was reasonably content, with my first PM!

I sympathise with the frustration - it's so annoying not to be able to do what you expect. But, given your activity level, your doctor should be prepared and willing to keep on making adjustments. Your profile doesn't say what country you're in, but if you're in the US, I recommend asking your doctor to get the manufacturer's representative in for a conference with him/her and you: the reps often know some things that can be done that the doctors don't, especially if the majority of their patients are older and fairly sedentary.

You also didn't say what the underlying reason for the PM is: that can affect how it's programmed, and members here may be able to make suggestions (eg: if you have heart block, rate response may be inappropriate for you).
Persevere - I know how irritating it all is, but keep pushing them to try something else.

Good luck

Running out of energy.

by Squad12 - 2014-10-02 08:10:02

I'm 56 and in pretty good shape and was always active between working, walking, riding bike and working around the house. Since I had my PM implanted in August of 2013, I have noticed that I do not have the stamina to keep up anymore the way I used to. I have Sick Sinus Syndrome and still have issues with AFIB.
I seem pretty good riding bike but seem to poop out when I am doing other things. I take Metoprolol at night and that makes me tired.
I can still out do people that are younger than myself so I guess that's good. I am alive and I adjust for the way I am feeling at the time.
Hope you get it worked out. Maybe they can put a Holter or Event monitor on you while you play to see what your heart is doing. Do you have a pulse ox monitor to check your O2 level when you get light headed?
I used to play hockey so I know it is very demanding. Maybe have them change you before full line changes so you can rest a little more.

Take care and hope everything works out.

Extra info

by H-skate - 2014-10-02 11:10:02

In response to Sara TB, I am in US and did have the MFG rep in during my second adjustment. My frustrations are actually increased due to the fact that I originally had a benign SVT arrhythmia. I hesitated at the thought of surgery but my cardiologist convinced me that it is so simple and safe that why wouldn't an active person get the surgery and be done with the condition (cured) for good. Well, I was awake during my procedure and knew something was not going right. Afterward my surgeon told my wife that he nearly had a heart attack because he thought he ablated my actual pacemaker but the everything seemed fine now. Everything did seem fine for 30 hours or so and then things took a turn for the worse. I was in and out of the hospital for 10 days. The MD thought things would improve, but they didn't. I was in total denial that this was happening to me.

Anyway I have a partial block. So, in some ways, I consider myself lucky. But I kick myself every day and think about how my decision might have wrecked my life and rue the day I decided to have that ablation.

I know it sounds like sours grapes but I have moved on. I just made another appointment to have them tweak that big chunk of metal once again. But I've always believe in the benefit of some physical exertion that really stresses the body. I think that helps keep my young and I will keep at it until I get the best results I can.

By the way I don't need an event monitor (though I did that before surgery and my heart is actually in excellent condition). This evening I just transmitted my heart records over the phone and into my MDs office. They are going to review the results and see what can be done.

Thanks for all your responses everyone...

Also, I like to know what those who have a lot of trees in their yard and fireplaces to stoke in those cold Winter months (Minnesota) if you can't use a chain saw. There's got to be some lumberjack types with PMs too : )

Rate response on?

by golden_snitch - 2014-10-03 10:10:54

Hi H-skate!

Would you know, if the rate response sensor in your pacemaker has been activated? In heart block patients this is usually not necessary - you need it when your sinus node is too slow -, but sometimes doctors still switch the rate response on. And then it's possible that it does more harm than good. You can check whether it's switched on, if you look for what mode the pacemaker has been programmed into. Anything with an "R" at the end, for instance DDDR or AAIR, means that the rate response is on.

If the rate response is switched on, maybe let them switch it off and give this a try. Your sinus node dictates the pace, and in your case the pacemaker only needs to make sure that the ventricles beat at the same pace. But with rate response on, the pace can be dictated by the pacemaker and not the sinus node. And that can lead to the heart rate not decreasing quickly once you stopped exercising (between your shifts).

Inga

Oops forgot: Chainsaw

by SaraTB - 2014-10-07 05:10:37

I've used a chainsaw without any issues at all, and I'm only a 5'3" 120lb female . . . . Also a hedge trimmer, weed whacker, backpack leaf blower . . .
If you use the Search function (top right hand corner of the page) for 'chainsaw' you should get some encouragement. However, if you do have Rate Response set on, the vibration can mess up your rhythm, so do get that checked.

Thanks for the background

by SaraTB - 2014-10-07 05:10:57

As it happens, I have my pacemaker for the exact same reason: an ablation for SVT that accidentally ablated my AV node . . . . yes, I can empathise! Not at all what I expected.
As Inga says, it's worth checking whether rate response is set on or not: mine was on originally, and we heart block folk don't need it. Further, it turned out (after much nagging and gnashing of teeth by me) after a treadmill test, that although I theoretically have 3rd degree heart block, sometimes it will go into Wenckebach phenomenon, which meant that, on exertion, my pacemaker would read the increased heart rate as an arrythmia, and stop pacing me, which meant my heart rate would drop and I would have to stop in my tracks.
I sympathise hugely with your frustrations over this: it took 6 years to get the Wenkebach diagnosis, and adjustment to manage it. Please don't give up with your doctor and Rep. but keep pushing for an answer: propose a treadmill test to eliminate this possibility, for example.
Good luck and I wish you perseverance!

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