Breathing response problems with SJM PM

I had a St Jude Medical pacmaker inserted last year after I was diagnosed with chronotropic incompetence.  I am in my 40s and want to return to social sport and playing with my kids.

My main issue when exercising is that I rapidly run out of breath.  If I try to jog or play soccer with my kids I seem fine for the first few minutes and then I get a terrible aching sensation in my lungs and have to stop moving and pant for the next minute to recover.  The feeling reminds me of doing sprint drills so hard that you want to be sick.

It seems that when my hear rate is elevated by the PM I run out of breath very quickly. 

As an example - I went for a swim.  I did a gentle freestyle lap of a 25m pool.  When I got to the end I was pleasantly suprised at  how easy it was.  I was standing at the end of the pool when I was suddenly hit with the feeling of being completely out of breath.  I struggled to get out of the pool and lay curled up on the floor until I got my breath back a minute later.

After a break I went back to the pool and did another lap. This time however I did not move my left arm and had it tucked up against my side.  I worked harder to make sure I did the lap in the same time as the first lap.  By not moving my left arm I got a lower heart rate during the lap.  I felt fine when I made it to the end of pool and didnt have any issues.

The bounday between being ok during exercise and completely draining out seems very fine.  Why doesnt my breathing adjust to a higher heart rate?  How do I return to running without having this drain out sensation?  How do I tune the PM to my breathing so that I get a better result?  

My technician is trying to help but is struggling.  She called the St Jude Medical help line and it was useless.

I really want to return to running, swimming, soccer and cycling. For now I have no confidence that I can do any of these activities without the PM causing me significant distress.

Any and all thoughts welcome!

2 Comments

I share your frustration

by IAN MC - 2017-03-16 10:19:39

Some suggestions :-

- Insist that you have a treadmill test with an expert from St Jude there if your technician is struggling.

- it sounds to me as though your recovery setting needs adjusting but I am no expert. Not only can settings be altered to change when RR kicks in i.e what level of activity is needed but  the slope setting determines how much RR you get for a specific activity. Also the recovery setting determines how quickly your HR returns to normal when you stop exercising . In your case your HR may be dropping too rapidly  ( but you will only get the answers from a treadmill test.)

As an example I had a treadmill test done this week with a Medtronic guru doing the adjustments. In my case I  was plateauing at 130 bpm far too long before RR kicked in . A very minor adjustment is making my RR kick in sooner and I can now run further without becoming breathless.

There are varying degrees of chronotropic incompetence .You may be slightly or severely C.I.  It may vary from day to day and it may be intermittent over fairly short periods. It may worsen with time , it may not . It is essential to find someone who understands this.

Another unfortunate fact is that there is no perfect Rate Response sensor . The existing ones attempt to mimic a perfectly functioning Sinus Node  but all fall short in my view .

Do you know what type of RR sensors you have in your PM ?

I hope that you find someone who understands the various ST Jude settings. I am certain that when you do, your exercise tolerance will change dramatically.

Ian

rate response

by Tracey_E - 2017-03-16 12:48:59

Just typed a long response and lost it all! ugh!!!! Will redo it later, but until then, ditto Ian's advice to ask for a treadmill test. Most SJM (all?) are motion only, not respiration, so cycling may always be a challenge but other sports should be fine, it's just a matter of finding the right settings. Sometimes there is no ideal. Mine is very sensitive which means I get short of breath with stupid little things like going down the stairs, but it's great at the gym, my rate jumps right up and stays up. I want that, so I choose to live with the occasional breathlessness. 

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Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.