Pacemaker and stairs or hills

40 years old, Medtronic pacemaker for 3 years now, implanted for low heart rate (30-50 bpm), very active before PM, PM adjusted multiple times to continue active lifestyle

I think my upper and lower limits are set appropriately, as is my rate response. I don't have any trouble with exercise, walking, or running. But I get shortness of breath even walking up stairs or a small hill. My family likes to hike and I experience significant heavy breathing and I have to go sooo slow. As in, my 7 year old with his short legs is much faster than me. I hate holding everyone back but I especially hate it being so much work. I literally feel like I am pushing a wall trying to get up hills. My heart rate isn't concerning to my doctor and the Medtronic tech says there is nothing that can be done. 
My question is has anyone else had issues with Medtronic in these situations? Does anyone have a different brand and experience no trouble hiking? Do you think it would be worth asking about getting a new brand? I would definitely need insurance to approve it and I don't know if that's realistic. But I hate the thought of my pacemaker continuing to limit the lifestyle and memories I want to make with my family. 


7 Comments

hills

by akaDM - 2023-10-13 12:56:17

"the Medtronic tech says there is nothing that can be done"

Is this specifically in response to your problem with hills and stairs?

I've occasionally experienced something like this, but am usually okay with even steep hills. When I think there's an issue I try to move fast on the spot to get my heart rate up before the hill which seems to help - but this is rarely needed. On especially steep long hills, I hit my max bpm (156) and might then need a short rest; I've not asked them to increase the max higher as it seems age appropriate. I've no idea if there's a difference in how different makes can be set up to deal with hills -- mine is a BS.

.

by Cac331 - 2023-10-13 13:32:15

I haven't hit my max which I think is why my doctor hasn't been concerned. Also it's set pretty high since I've never had issues with it going too high or any arrhythmias.

I've gotten different responses from the med techs- all say that my settings can't be optimized any better. This may be true, but giving me reasons why it isn't the device, it's me hasn't been helpful. I've been told that I'm too old and that's why the activities are hard. That I'm too out of shape. That I'm making it up and there isn't really a challenge. These are silly. I am 40 and very active and fit. But they've never been willing to monitor it when I'm climbing stairs or on an incline. Only resting or walking. I think maybe that would give visual evidence to my claim? Honestly it's been a frustrating and discouraging process trying to get help. 
I will try getting my heart rate up before the hills and see if that helps! Thank you!

Had similar problem

by Theknotguy - 2023-10-13 13:42:17

Was volunteering at a large hospital.  Had a long back hall.  I'd walk the hall and run out of breath at almost the same brick in the wall each day.  Talked to my EP.  Bunch of tests.  

Local pacemaker tech guy did make a rate response adjustment but it didn't do any good.  It helped a little but not much.

EP called in Medtronics manufacturer rep. Guy got me in pacemaker reading room, pulled up screens on the monitor I'd never seen before.  Asked me date, day, and hour of my last run-out-of-breath problem.  Looked at screen.  Started asking questions.  I was really getting about one word out of three.  Asked if it was OK for him to make changes. I said OK.  "Good!", he said, "I've already made the change."

This was my old Medtronic's pacemaker.  There were three stages of rate response and I was on step one of three.  Within each step there were about 10 other changes that could be  made.  Local pacemaker rep didn't have access to all changes and wasn't trained to make the changes.  After changes made I could walk the hall and do a lot of other things.  

Got my new pacemaker and asked if all the settings would transfer over.  They said they would.  I was mowing lawn and had to hang on the fence because I was out of breath.  Got my EP office on phone and told 'em they hadn't made changes.  Local pacemaker tech said, "Oh, yeah.  They forgot to make the second page of changes." That put me back to the mfg rep's changes.  Felt a lot better.  

If your EP doesn't go along, talk to Medtronic reps at the hospital.  These are the people who go into the OR and make the settings when they install the pacemakers.  Fortunately my EP was into the process and I didn't have any trouble.  But if your EP starts to stonewall you, make some noise, talk to your medical insurance people.  You shouldn't have to feel miserable just because they don't know about all the rate response settings on your Medtronic unit.  Or, if the changes can't be made, have your EP tell you what your heart condition is that prevents them from making setting changes.  Problem for us more active people is that we go way out of the "normal" settings and the local people don't know what to do.  Or as my EP said, I don't have too many pacemaker patients who toss around 55 pound 4x8 sheets of melamine on a regular basis.  So you are way out of normal limits.

Hope they can help you.
 

They are feeding you bung!

by USMC-Pacer - 2023-10-13 13:56:50

There's lots of other changes that will help you. On my last device, I had similar issues that I complained about. Finally, the NP and Medtronic Tech put me on a treadmill so I could recreate the issue. My AV delay settings were all off during exercise. They tweaked them my symptoms were gone immediately.

On my current device, the settings work a bit differently, but my symptoms were the same. They had to make some adjustment to the "PVARP" which is also related to AV timing issues. 

Worked for me!

Try, or demand they monitor you on a treadmill with an incline to SEE your symptoms while being monitored. I don't know why, but I've heard folks here having to fight for this. you'd think they would want to get things right for you!

You may have more luck with the tech who should be able to get the approval to make the changes. In my case, the NP was standing by.

All the best!

Shortness of breath on stairs

by Selwyn - 2023-10-13 18:16:06

I've had this problem for ages. My last fine-tune at the PM clinic seems to have helped.

The possible approaches:

1. Rate response onset should be at the quickest onset ie. the threshold needs to be adjusted for onset, and the rate of increase ( the RR slope) needs to be increased.

2. The lower limit can be increased a little to give you a head start. ( worth a try?)

3. The atrial refractory period can be decreased a little to inc. the chance of a P wave  tachycardia. ( care otherwise can end up with loop tachycardias - Crosstalk.) 

4. Hyteresis should be off.

My recent pacemaker is a Boston Scientific which I hoped would help the stair problem further - the techs have declined to switch on the ventilation RR. I think this may be a mistake of their thinking and a blend of RR sensors is likely to be best. 

It is certainly worth pestering the techs. Whilst I am not in a perfect state doing stairs, it is a lot better. I had to reduce the venticular pacing from the PM as this  was making me short of breath.  I see on my Kardia that I am still getting paced with the ventricles but not so fast, and then it suddenly settles. 

 

Hiking

by JWren - 2023-10-14 06:22:15

I am much older than you and got a Medtronic pm in December 2018. I was/am very active in a number of ways, day hiking being one. With the Medtronic, it always seemed to take about two minutes for the device to figure out what I was doing, and then it would be ok. My primary activity is swimming and the pm has never worked well. I broke a wire in the Medtronic setup in April 2021. I had had numerous discussions with my new EP about getting a different device that we both thought would work better in the pool and I got a BS which uses minute ventilation as well as motion. Unfortunately, it does not work any better in the pool. I usually can't even get HR to 100. It does seem to work better for hiking but there is still a little bit of a delay, thus I experience what you are saying with a short flight of stairs etc. With the Medtronic, I could tap on the device and I would get a response that would help me some in the pool, but the BS does not respond to that. I have been monitored on a treadmill, observed by five people. They said they have done all they can. They also said the the average person at my age does 6 METS on the treadmill test, outliers do 9 and I did 12. None of that helps me swim.

Stairs

by Lurker - 2023-10-14 17:44:34

There aren't many people can do stairs. 4 months ago my RR was cranked way up. It took me about 2 months to get used to it. I can now go up stairs get to the back of house and it hits me very little. Also my rate will jump 12 to 15 points just going from a sitting to a standing position. It can be annoying at times.  Something I have noticed is I can't bend over at the waist for too long or I'm breathless. im better off going down to ground level to do what I want. 
 

You know you're wired when...

Your device makes you win at the slot machines.

Member Quotes

My cardiologist is brilliant and after lots of trial and error got me running. I finished this years London Marathon in 3hrs 38 minutes.