Changing the settings

I have a crt-d and the doctor will not change the range of pacing. I walk 5 miles, for exercise, 5 times a week. On mile 3, I have a what I call a “spell”. The device starts to stimulate and causes me to feel dizzy and weak. It feels like the device is slowing the heart down and I lose my walking rhythm. 

Lower rate: 50

Upper Tracking rate: 130

Upper Activity rate: 120

I have learned that to find the upper activity rate that is right for me is 175. 

220 - age = upper activity rate. This information comes from a well known electrophysiologist in my area. I feel like I am being held back and I have asked for the Activity rate to be increased but the response I get is “no” without explanation.  I am now no longer sure of myself to do my walk/exercise safely and have missed out on some beautiful days to walk, decompress and enjoy the neighborhood activities.

How do I get the programmer and doctor to listen to me? It is a very patriarchal, stern and “my way is the only way” type environment. I feel like a hostage and am told to deal with it.

Any suggestions?

 

 


5 Comments

what's safe

by Tracey_E - 2019-01-05 22:59:54

First of all, those charts do not apply to us. We have heart conditions are are paced so you can't use a formula that goes strictly based on age. And I think 220-age is max, 80% of that is a more reasonable rate to work out at. However, go back to my first sentence, they don't mean anything for us.

Second, if you have CRT and D, that means you have quite a bit going on with your heart which means they probably don't want your rate that high because it's not safe. You don't want your defib to fire. Have you done a stress test to see how high your rate gets and how your heart reacts? 

If you don't trust or like your doctor, then get another opinion. Not every practice is a good fit for every patients and it's ok to change.  But don't be surprised if another one doesn't want your rate getting too high either. 

Cardiac rehab might be good for you. You can exercise under medical supervision so they can be sure you are safe and you can build your confidence. They can also see what's going on when you feel the symptoms. 

Thanks Tracey_E

by Mad heart - 2019-01-06 07:49:09

Thank you Tracey_E! 

You have given me more of an explanation than any of the doctors! 

I have never been advised to do a stress test or cardiac rehab. The current doctor I see is the fourth cardiologist in the 11years span that I have had to deal with (first implant December 2017).

Thank you again Tracey for your help!

 

ask them

by Tracey_E - 2019-01-06 09:38:35

Tell them you want to be more active, any cardiologist that doesn't jump on that and help you needs to be fired. Being fit is the best thing we can do for ourselves so your doctor should be supportive of that goal. 

My upper limit  is very high, my rate shoots from 120 to 160 as soon as I exert and it gets over 170 if I push hard for a workout. Before my doc would allow it to be set that high, he had me get on the treadmill in the office. When my rate got up, my bp and O2 sat were still good, my rate was fast but regular, and I was able to keep chatting with them the whole time. So he's ok with me getting up that high. 

The 220 minus your age myth

by IAN MC - 2019-01-06 10:31:38

it is interesting to read the history of the 220 minus your age formula to supposedly calculate your maximum heart-rate.

It was quickly calculated on the back of an envelope by an American doctor, Dr William Haskell in 1970 who was on his way to a conference .It was a proposal based on a a very small number of patients, some heavy smokers, some with heart-disease.... they certainly weren't scientifically selected.

Dr Haskell apparently now laughs at the way it has been accepted as gospel and is used on training charts in gyms, used to program Fitbits, worse still is rigidly used by many doctors !   It was NEVER intended to be adopted in this way and it is an interesting fact that 40 % of people can go over the theoretical maximum with no problems .

As Tracey implies when you have a pacemaker the formula becomes even more useless .

Ian

The 220 minus your age myth

by Mad heart - 2019-01-06 14:41:38

Thanks lAN MC!

I am slowly learning and getting more realistic information from all of you! I have been told almost nothing from the medical institution. My husband is just as irritated as I am with the bits and pieces of information the doctors give us. He can usually get information out of anyone. White coats, he says, are the most difficult to pull any information from. ( Gotta Love Him!)

Thanks again IAN MC, the history of this equation is interesting.

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