New to Pacemaker

I received my pacemaker 12/14/15 and was SO happy to be able to run on 12/24 and 12/25! It is comforting to know that my heart will beat like it is suppose to now. I feel that I am still a bit winded with my running but hoping this will get better. I go back to my technician in 3 months. Any thoughts for a new pacemaker would be appreciated. Thanks, Linda

6 Comments

welcome!

by Tracey_E - 2015-12-26 07:12:56

Glad you found us! Congrats on getting back to running so quickly. If you are getting winded when you run, they may need to tweak your settings a bit. The settings they send us home with are a good guess but it's common to need to fine tune them, especially if we are active.

New to Pacemaker reply

by lkhughes77 - 2015-12-27 01:12:24

Thanks TraceyE for the quick reply!

Is it normal to have to wait 3 months for the first follow up appointment for tweaking? The technician said he would see me in a month if I were an Olympian. Running is my sanity and I have a half marathon in mid-Feb. I ran a half marathon the day before getting my pacemaker and it was VERY difficult to finish it and want my next half to be 'normal'. I definitely want to make sure there is nothing wrong with my lungs. So tweaking the settings will most likely help my breathing? (so happy I did not get dizzy running!)

I had radiation 4 years ago for breast cancer and I don't think my heart has been the same since that. (probably what caused my heart issue)

I just plugged up my remote monitor that sends data to the doctor's office. I have no idea what to expect with this. If they read it and see my pacemaker needs adjusting, will I still need to wait 3 months for everything to 'settle' down? I can try to contact them to see. Thanks again for this site! Lots to lean.

Icd

by lizzymag58 - 2015-12-27 04:12:40

When I ask about the monitor I was told by my Dr they only received a message if I received a therapy . Yours may be set up differently . I've had mine since June 30th so far so good, couple more days I'll make the 6 month mark woo hoo I'll be good to drive again .

timing

by Tracey_E - 2015-12-27 06:12:09

They normally set the first appointment anywhere from 6 weeks to 3 or 4 months out. They like to start out with it turned up (very much oversimplified, but you get the idea) in order let the leads settle in and give the heart a chance to get used to being paced, then they turn down the juice so the battery will last longer. This is different from fine tuning, which can be done any time.

One thing to keep in mind, you are barely 2 weeks post op. Some deconditioning always happens in the time leading up to getting the pacer, how much depends on how bad you were before, how long you needed paced before you got it. It's a minor surgery, but it's still a shock to the body and drugs to get out of your system and it's going to take a few weeks to fully bounce back. I'd say ease up and give it another week or two, see if your stamina starts to improve, then if not give them a call and ask to be seen sooner. Winded is pretty normal. If your legs get heavy, you get dizzy, hit a wall, those are all signs you might need your rate higher.

What they need to do for running won't show on the automated reports. That mostly shows if it's pacing correctly, if the leads are good, if the heart is having any crazy episodes. That's different from if it's getting your rate high enough when you run, working optimally for you.

Write down the times when it happens, that can help them pin down what the pacer and your heart are doing at the time. They can adjust how quickly the pm raises your rate when it senses activity as well as how high it goes. Sometimes it can help to get on a treadmill in the office or go run some stairs to test out the settings, then fine tune again. There are a lot of things they can adjust, so they like to do it in small increments. After I'd been back a few times, they had me get on the treadmill while on the pacer computer, adjusted, ran, adjusted some more, ran some more. My doc and technician are both runners, helps a lot! Some offices/doctors are more responsive than others. None of them have a lot of athletic paced patients and no two of us are alike, so don't be surprised if this is a process rather than a one time fix.

Good luck!!! I think it's fabulous that you are running again so quickly. Obviously you're a fighter and you're fit, that's two formidable weapons. Try to be patient, you'll be running better than ever and this will just be a memory before you know it. Patience is not my forte either, lol. I need a new battery, trying to schedule it around a race the end of Feb. My daughter found this crazy 5k with inflatable obstacles she wants to do together, can't climb obstacles if I'm sore. My doc rolls his eyes at me a lot :)

Being patient ... thank you!

by lkhughes77 - 2016-01-02 10:01:28

I ran my first group training run today (8 miles) and it felt so wonderful. I notice I need to get the breathing better plus as suggested "be patient". I appreciate the detail reply. I will contact my doctor to see about some breathing exercises. I have a half marathon 2/14 and want to be closer to where I once was 4 years ago before my breast cancer/radiation. After 4 years of 'just not getting it all done', I am looking forward to getting my MOJO back in 2016! I am so happy to have finally figured out the problem and to have a PM!

Breathing follow up ... no issue!

by lkhughes77 - 2016-02-11 03:02:15

I had a lung velocity test and it looked 'normal' for the most part. I followed up with my lung doctor and he said my lungs are perfectly normal and my trouble breathing all goes back to my heart. So it is good news that there isn't an issue with my lungs. I notice too that in the past before the PM and before my dizzy spells, I was able to get my heart rate up to 150s and 160s. Now I can barely get it up when really pushing my running. I have all the data on my Fitbit workouts and can provide the details to the EP technician next month. For now, I am so happy to be back to 95% on the heart. I am looking forward to running the Breast Cancer Half Marathon on Sunday as a survivor! The lung doctors advice was to train more and lose 10 pounds so I am now on that mission. Thanks for all of your support and advice!!

You know you're wired when...

You get your device tuned-up for hot dates.

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My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.