Short of breath PM fix

Hello everyone,
I wanted to update, all who are interested, about some recent changes my Cardio/EP made to my PM During my recent checkup and PM check I heard from both the Medtronic Rep and my Cardio that my PM is functioning fine. To that I responding " I am glad my PM is functioning well but I am not" and I added that I am disappointed in my lack of ability to function well and once again I added that I have been complaining of weakness, shortness of breath and extreme fatigue. I know those complaints sound familiar to many on this site. My cardio ordered a stress test (basically I think to appease me because they looked at me as if I was a mental case). Even my family was doubting my symptoms were real. anyway, the date of the test arrived, I was hooked up to the monitors and ready to go when the Cardio came in and said he could not do the test because my PM was working 100% of the time and he could not get a good EKG reading. I guess I argued back that he already knew that I was 100% dependent on my PM and yet he scheduled it anyway. At that point I guess I said the magic words" Maybe I need to get another opinion" because with that statement he decided "maybe we could do the stress test anyway and see what happens. I agreed and started the stress test. I go through the 1st 2 three minute trails and the machined switched to the next level of difficulty. After 2 minutes I was gasping for air and that is when they saw something. It turns out that even though the upper end of my PM was set to 160, the PM started blocking me 2:1 at 130. I siad stop the machine I am going to pass out and so they hit the emergency stop button. I took me about 4-5 minutes to recover but they actually saw there was a problem and one that was most likely causing my symptoms. I was scheduled for an appt with my EP and his team.

The EP appt. was difficult because they started by turning my PM off at which time I promptly slumped in my chair, then they turned my heart rate up to 150 at which time the PM blocked me 2:1 again. They worked with the PM settings for at least 40 minutes and then declared the changes they made should prevent my PM from blocking until 180. They said go out and live your life, climb steps, run, jump, do everything strenuous that I could think of.

I took their direction and began to live my life as if I did not have the PM, the way they said I should after it was initially implanted. I cannot believe I am actually saying this but I can do most everything I did before and no symptoms. Now, I can actually exercise, come home from work without taking a 2 hr nap, stay up later each day, sleep well and wake up refreshed. And, yes, for those thinking it, have sex with my wife again. I felt vindicated, that I am not crazy and now there is a chance I can lead a somewhat normal life.

I hope this serves others well in that we all need to push our doctors until we get the answers. It is out life, not theirs and we deserve the attention to detail. It is not enough for them to just save our lives (I am grateful they did) but they must work with us to help us gain the quality of life we deserve. I am sure I will have other issues in the future, the PM is only a machine, but I will never doubt myself again. We should all listen to what out bodies tell us and push back against the medical establishment until we are satisfied with the quality of our lives.

Thanks for listening and I wish you all the best you can be.
HK


8 Comments

Sounds familiar

by jbjlll - 2014-03-02 02:03:34

Thanks! Having some of the same symptoms a month after Pace/Def implant. Never had these problems during the previous 10 years with a Pacemaker. It must be the settings. Even up to the time I had the new unit put in I was able to walk up to 5 miles per day. Not any more. Have appt. this coming week and will bring it up with the Dr. and Medtronic rep.

Short of breath PM fix What did they do

by HK - 2014-03-02 04:03:10

Sry, I left out the fixes they made. First they experimented the the actial time from my AV not input to the PM for a Ventricular contraction. The original setting was to long and so they shortened that time. Second, they increased the high end of my heart rate that the PM was permitted to begin blocking me at 2:1 from 130 to 180.

I am a Physical Therapist a person who has been weakened by illness or injury is going to challenge his/her body via exercise creating the need, at least at the start, for a higher heart rate. I was very ill and in CCU for 12 days, unable and not permitted to move, at all. I lost 30 pounds a lot of muscle mass. After the PM was put in on July 29 2013 I could not even roll sideside in bed without help. Needless to say I was very weak and needed rehab. I was unable to gain most of my strength back because my PM would block me at a low rate for someone who is rehabing. Up until now I could not convince the professionals there was something wrong and so they fixed it by increasing the rate at which the PM would start to block 2:1. My high end heart rate was initially set to 130 and was later increased to 160 but I was still being blocked at 130. This would not allow me to increase my strength and live my life as it was before. The fix was increasing my upper end heart rate to 180 before the PM would block at 2:1. This has improved all of my complaints but was only allowed because they saw my EKG during the stress test and it proved by PM was preventing me from getting stronger. Both of these changes are experimental but have , so far, worked well.
HK

Way to go.....

by donr - 2014-03-02 04:03:35

.....BUT - you left out something. WHAT DID THEY CHANGE?

Donr

Way to go

by KAG - 2014-03-02 04:03:50

You've confirmed that you are your own best advocate. You know how you feel and have to keep after them until your device is optimized. Something many of us are very familiar with.

So glad that you kept after them and had success. Enjoy getting back to normal activities!
Kathy

Thanks

by Theknotguy - 2014-03-02 04:03:56

HK:

Thanks for letting us know what happened. I keep saying you have to be your own advocate. You proved the point.

Very happy they were able to find the problem and that it wasn't in your head.

Enjoy your new life!

Theknotguy

Ahhhhhhhhhhhh! That's....

by donr - 2014-03-02 06:03:22

...what we wanted to hear!

Thanks.

Donr

HK....what model Medtronic PM do you have

by RDD - 2014-03-02 06:03:57

I have an ADDR01 and it,and I believe all Medtronics, have only an accelerometer for rate response to exercise. That basically means that it only responds to the number of footstrikes on the ground, whether the ground is level or severely inclined. It appears that it is difficult or impossible to adjust this pm to respond to an demand for increased O2 to the muscles unless that demand is also accompanied by increased jostling of the pm. Based on a trick told to me by a bike racer,I can increase my HR, say before a powder ski run, by rapidly tapping on the PM for 15 seconds or so. Should I have to do this...I think not.Other brands have various methods of calculating a more accurate O2 demand in addition to the accelerometer,such as measuring respiratory rate or myocardial muscle impedence. I have rapid atrial tachycardia so my pm is pacing my ventricles 100% of the time. I can approach my set upper HR if running but no way else (biking, skiing,hiking hills)\. Another plea for active participation in one's heart care,including the selection and setting of the PM depending on one's own life style. Any thoughts out there about what I should do now?
RDD

Medtronic PM Model

by HK - 2014-03-02 10:03:51

RDD and All,
I have the Medtronic Adapta PM. Here is the link to the details and info about this model. I understand they generally use this model on younger people with an otherwise healthy heart.

http://www.medtronic.com/patients/bradycardia/device/our-pacemakers/adapta/index.htm

I am so happy you are all here to help support our specific community with out very unique issues. I take a great deal of comfort from you all and I hope I am giving it back.

HK

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