Pacemaker experiences…

[SoCalSteve]

Hi all,

After reading Axel23’s experience and wisdom with his major surgery: https://forums.thepaceline.net/showp...67&postcount=1

I thought it fitting to ask the group about their experiences and wisdom when it comes to having a pacemaker installed.

Hint: come next Tuesday, yours truly is having one put in.

A special shout out to my buddy Mike (elafentino) for his call to me and his great feedback with his experience. Cant wait to finally meet you in person when we travel to N.C. In October.

As always, thank you all in advance!

Steve

[Peter P.]

I have a Medtronic Advisa Dual Lead pacemaker. One lead monitors the upper chamber, the other lead fires the lower chamber.

I have a second degree Wenckebach block. For the uninitiated, the electrical signal which causes the left upper chamber to contract normally travels to the lower left chamber, causing it to contract in sequence. In my case, the interval between the upper and lower chamber contracting gets longer and longer until the lower chamber just plain misses a beat. There is a correction, then the sequence starts all over again.

My normal resting heart rate was in the 60's. With Wenckebach, it was in the 30's/40's. I was okay as long as I was sedentary. Get on the bike however, and I would fall apart in 20 minutes. I couldn't get my heart rate up to deliver what was needed.

My pacemaker runs all the time-that is, it replaces the heart's signal to the ventricle. For people with a pacemaker to treat afib, the pacemaker only kicks in when the heartrate goes bonkers.

The procedure was a breeze, and I got a decent lunch in the recovery room, too!

If you're a hiker, check with your surgeon to find a comfortable location for the device so it doesn't interfere with backpack straps.

You'll have the settings tweaked by a specialist. They use a device much like a computer mouse, connected to an oversized laptop. Place the mouse over the pacemaker and it reads/writes to and from the laptop. I also have a similar device at home. I get an e-mail periodically to send in my data. It does so via cellular. Unfortunately, you pay for each reading! I also see the pacemaker specialist twice a year to check pacemaker function and remaining battery life, which is typically 10 years. They replace the entire unit at that time. I don't know if they replace the leads, however.

My pacemaker is maybe 1 1/2" in it's largest dimension. It's slightly bulging through the skin below the collarbone, and I can feel the leads, too! However, it's not uncomfortable at all.

In my case, after the pacemaker was implanted, it still didn't work! I went to the cardiologist several times for adjustments with no luck. Then they scheduled expensive procedures such as a stress test with a crew of doctors watching (I told the doctors it wouldn't show up on a short treadmill test, but they wouldn't believe me!), and an angiogram, where I learned my arteries were very clean but showed nothing that was still causing the problem.

My pacemaker surgeon ran out of ideas so he turned me over to his colleague. I go to him and explain the situation. He says, "I've seen this once before, in a marathon runner." He checks ONE BOX in the software and says, "Go try that."

I went on a bike ride and almost cried. It took over 18 months to square it away.

There's a forum for pacemaker owners, which is handy for support and asking questions. https://www.pacemakerclub.com/

What else do you want to know?

[SoCalSteve]

Originally Posted by Peter P.

I have a Medtronic Advisa Dual Lead pacemaker. One lead monitors the upper chamber, the other lead fires the lower chamber.

I have a second degree Wenckebach block. For the uninitiated, the electrical signal which causes the left upper chamber to contract normally travels to the lower left chamber, causing it to contract in sequence. In my case, the interval between the upper and lower chamber contracting gets longer and longer until the lower chamber just plain misses a beat. There is a correction, then the sequence starts all over again.

My normal resting heart rate was in the 60's. With Wenckebach, it was in the 30's/40's. I was okay as long as I was sedentary. Get on the bike however, and I would fall apart in 20 minutes. I couldn't get my heart rate up to deliver what was needed.

My pacemaker runs all the time-that is, it replaces the heart's signal to the ventricle. For people with a pacemaker to treat afib, the pacemaker only kicks in when the heartrate goes bonkers.

The procedure was a breeze, and I got a decent lunch in the recovery room, too!

If you're a hiker, check with your surgeon to find a comfortable location for the device so it doesn't interfere with backpack straps.

You'll have the settings tweaked by a specialist. They use a device much like a computer mouse, connected to an oversized laptop. Place the mouse over the pacemaker and it reads/writes to and from the laptop. I also have a similar device at home. I get an e-mail periodically to send in my data. It does so via cellular. Unfortunately, you pay for each reading! I also see the pacemaker specialist twice a year to check pacemaker function and remaining battery life, which is typically 10 years. They replace the entire unit at that time. I don't know if they replace the leads, however.

My pacemaker is maybe 1 1/2" in it's largest dimension. It's slightly bulging through the skin below the collarbone, and I can feel the leads, too! However, it's not uncomfortable at all.

In my case, after the pacemaker was implanted, it still didn't work! I went to the cardiologist several times for adjustments with no luck. Then they scheduled expensive procedures such as a stress test with a crew of doctors watching (I told the doctors it wouldn't show up on a short treadmill test, but they wouldn't believe me!), and an angiogram, where I learned my arteries were very clean but showed nothing that was still causing the problem.

My pacemaker surgeon ran out of ideas so he turned me over to his colleague. I go to him and explain the situation. He says, "I've seen this once before, in a marathon runner." He checks ONE BOX in the software and says, "Go try that."

I went on a bike ride and almost cried. It took over 18 months to square it away.

There's a forum for pacemaker owners, which is handy for support and asking questions. https://www.pacemakerclub.com/

What else do you want to know?

What is the box the second doctor checked?

[Louis]

Originally Posted by SoCalSteve

What is the box the second doctor checked?

"On"

[SoCalSteve]

Originally Posted by Louis

"On"

Smart a$$!!!…

[Epicus07]

He may be referring to a feature called rate responsiveness that increases the pacing rate if it perceives activity to improve functional capacity.

Yes, when you need your battery changed they just replace your can and reuse the leads. Your estimated battery life is assessed at each check and triggers alerts when they are nearing the estimated replacement interval (ERI).

They should be charging you if they are doing a full analysis of your device (anywhere from 90 days to annually) but they shouldn’t charge you just for sending in a strip to check out symptoms. That is one cool feature of the automated communication with your device. If you are having a fib or a dangerous rhythm (VT/VF) your doctors office is notified. Your device stores all of your data and usually transmits at night while you are sleeping. It needs that device that you will keep by your bed to transmit the data.

Implanting these devices is very routine and rarely results in serious complications. Hope you have a speedy recovery.

[Elefantino]

As I told Steve, my kids got me this shirt.

[Peter P.]

Originally Posted by SoCalSteve

What is the box the second doctor checked?

Pacemaker Mediated Tachycardia Intervention (PMTI). I will NEVER forget that term! I think he UN-checked the box, turning it off, because it was seeing my higher heartrate while exercising, and the pacemaker was deliberately throttling back my heartrate.

I got a copy of this book. It's a good, easy to understand reference for anyone "in the market" for a pacemaker.

Also, Lennard Zinn's book, The Haywire Heart, is a useful reference because it explains heart problems and how they affect athletes.

[NHAero]

Not a facetious question - could these be made with wireless recharging?

[SoCalSteve]

Originally Posted by Peter P.

Pacemaker Mediated Tachycardia Intervention (PMTI). I will NEVER forget that term! I think he UN-checked the box, turning it off, because it was seeing my higher heartrate while exercising, and the pacemaker was deliberately throttling back my heartrate.

I got a copy of this book. It's a good, easy to understand reference for anyone "in the market" for a pacemaker.

Also, Lennard Zinn's book, The Haywire Heart, is a useful reference because it explains heart problems and how they affect athletes.

Thank you for all this information!

From chatting with people and what I have read, to make for a seamless experience for cyclists, it’s all about the way the pacemaker is programmed. I’ll be sure to reiterate this many times to my cardiologist and tech ( whoever does the programming).

Thanks again!!!…

[Rpoole8537]

I have the same symptoms that Peter has. I had afib in 2014 and had ablation which worked, in some ways. I had some PVC's and took small doses of flecanide for a few years. Resting HR dropped ten beats to 52 bpm. Stopped taking flecanide and HR returned to normal. Now, it has dropped again, and I'm not taking any meds that should interfere. I have my annual FU with cardiologist in two weeks. I cannot generate sufficient power to climb large hills much less a mountain. I'm 66 yo and have ridden for 30 years. The doctor and I need to discuss this condition and possible treatment. I'm somewhat tired even when sedentary. I'm exhausted after a 15 mile bike ride. Good luck to the OP.

[bpiecuch]

I also have a pacemaker due to a similar type of Heart Block. However, my heart block occurs randomly and very rarely, so I'm only paced <1% of the time. The remainder of the time my heart functions normally.

So, as you can image, my pacemaker has very little affect on my cycling (or life) in general. I can still hit power numbers and heart rates, and my pacemaker does not interfere with anything. Post-surgery, there is minor pain and discomfort in your shoulder area. I couldn't do much with my left arm for a few weeks (tough being left handed...) Initial implantation was probably a 2 month recovery before I did anything greater than walking. A lot of the challenge was getting through the mental barrier of having the implant. I recently had pacer replacement surgery and I was back to training within a couple days. I don't even think about my pacer anymore.

SoCalSteve, do you know what your condition is and why you need a pacemaker? I'm happy to answer anymore questions.

[SoCalSteve]

Originally Posted by bpiecuch

I also have a pacemaker due to a similar type of Heart Block. However, my heart block occurs randomly and very rarely, so I'm only paced <1% of the time. The remainder of the time my heart functions normally.

So, as you can image, my pacemaker has very little affect on my cycling (or life) in general. I can still hit power numbers and heart rates, and my pacemaker does not interfere with anything. Post-surgery, there is minor pain and discomfort in your shoulder area. I couldn't do much with my left arm for a few weeks (tough being left handed...) Initial implantation was probably a 2 month recovery before I did anything greater than walking. A lot of the challenge was getting through the mental barrier of having the implant. I recently had pacer replacement surgery and I was back to training within a couple days. I don't even think about my pacer anymore.

SoCalSteve, do you know what your condition is and why you need a pacemaker? I'm happy to answer anymore questions.

Funny you should ask ( and thank you! ).

I literally just got off a video chat with my cardiologist (EP). She said that the upper range would not be limited at all, just the lower range ( at 60 bpm ). She said it will only kick in if my heart rate gets below 60. She said we can adjust this lower, if I want. ( resting heart rate is in the low 50’s normally ).

She said 4 weeks before I can cycle again, but I’ll show up at 6:30 am the day of ( next Tuesday ) and be released by 11:30 am the same day. Isn’t modern technology amazing!!!

Again, thanks to everyone for reaching out to me, via phone, pm and on this thread. This is, and always has been, an unbelievable giving and knowledge group of great guys and gals.

[Peter P.]

My cardiologist set the lower limit on my pacemaker to 50bpm, so my heartrate will not go below that because the pacemaker dictates!

I can't even remember being sore after the implant. I was certainly able to ride the next day and I remember hiking a day or two after surgery.

I think they didn't want any heavy lifting for a period of time until the wiring and pacemaker were embedded sufficiently. The surgeon did tell me of a woman who pulled the wires out of the pacemaker doing pull-ups. That was expensive...

[bpiecuch]

SoCalSteve,

Yes, our conditions sound similar and you should be perfectly fine to resume cycling after the surgery. My sensor is set to a normal low rate of 60bpm. However, the "hysteresis" setting allows that rate to go down to 50 (assuming the rate lowers slowly). This actually improved my sleep, as prior to this setting my pacer would pace me up to 60 and keep me awake.

The newer pacers are nice, and I have a new bedside reader that reports back to the manufacturer daily. After a long, hard, 5hr gravel ride a few weeks ago, I got a call from the Doctor asking if everything was okay. They sensed the long, elevated heartrate and wanted to check in. Really amazing.

Again, please reach out (via PM if you'd like) if you have more questions.