Pacemaker recipients: Looking for support from others

Hello @11241935

Thank you for sharing; we're so glad you've joined us on Connect. I'd like to introduce to @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo, who've written about living with IPF, and many of them have written about Esbriet as well.
I'm tagging our Mentor @llwortman too, as I'm sure she may be able to offer more support and insight.

You can read more in these discussions on Connect:
– Pulmonary Fibrosis https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/
– IPF How To Cope with Sick Feelings https://connect.mayoclinic.org/discussion/ipf-how-to-cope-with-sick-feelings/
– HRCT https://connect.mayoclinic.org/discussion/hrct/

@11241935, have you asked your doctor about pulmonary rehab? Are you on oxygen?

I did the rehab.after the original surgery. im waiting for the evaluation results from a heart surgeon. the valve was size 19 mm. was too small. opening now at 1.1. was told that sometimes they can break the ring to install a trans valve.this valve has a flexible metal ring. just wanted to know if anyone has info

Hi Colleen, I have a pacemaker. @ gailfaith

Hi gailfaith here. I had a pacemaker implanted in April of 2016 because I had had two "drop attacks".
Walking along, I am not aware of anything, but within seconds I realize I am falling. The second half of the fall I know exactly what is going on. The first time I suddenly saw the grass coming up at me, and I sustained no injuries. The second time ( 6 months later) I was coming down a flight of stairs at a friend's home. The stairs had a landing close to the bottom and then a left turn with two more steps. I have no idea how far I was down the stairs, when suddenly I realized I was on my back sliding down those last two steps and could see my left hand still holding onto the vertical "rungs" of the banister. Because of my myotonic dystrophy, when lying down, I cannot raise my head straight up, but when I am standing, I have no limitations. They had hard wood floors so when the back of my head hit the floor, I hit it hard. I had a concussion that lasted 3 months. So happens I had attended a seminar just previously on concussions and one thing they said is that some people never get a concussion no matter how hard they hit their head. I thought I was one of those, as I have had many falls when I was a younger where I slipped on ice and hit the back of my head on the concrete sidewalk and never had a concussion. When I was in 8th grade, my class room was in the basement and there were stone steps going down. It was winter and I must have had snow on my shoes and I slipped and the back of my head hit every step on the way down.......no concussion! I guess age made me more susceptible to concussions. I was 80 with that last fall. I've had no drop attacks since they implanted the pacemaker. Occasionally I can feel some tachycardia, but it only lasts a few seconds compared to when I didn't yet have the pacemaker. I've had NO issues with the pacemaker. Healed with no issues. I feel nothing. even when it apparently is regulating my heart rate.

I would like to join; my pacemaker was placed in 2016 for bradycardia (and bundle branch block).

Hello @lmclaugh,

Welcome! May I ask, what brings you to the Connect community?

Hi @gailfaith,

I thought you might wish to read this study about a possible link between falls/fractures and pacemakers: https://www.hindawi.com/journals/crp/2012/498102/

I thought it could be helpful information since I also have a PM and have questions at times.

@lmclaugh
Howdy, glad to meet you.

I am wondering about your bundle branch block. Please clue me to your signs that you exhibited.

Welcome aboard. My PM placement was in June of 2015 for bradycardia. An echo tech mentioned RBBB (right bundle branch block) back in 2015 but no one else mentioned it except to say no. I currently have asymptomatic bouts of atrial fib that is being worked up to see if they can find the cause. Today I had a PET CT scan, which is the second of several tests I have to do. The first being the good o blood draw-that all came out normal. PTL on that. I was also started on Eliquis to keep my blood thinned. Future test will be a repeat ECHO and an at home sleep apnea test. I am usually very good at working out a minimum of 3 times a week at Curves and we live on a street with an incline so I walk the dog around the block hitting two inclines no matter which way I go-that speeds up the heart. Everything I had done in 2015 came back good I just had issues with 6 second pauses on my 30 day holter monitor. There are days I feel more sluggish than usual but I don't think I would have put much thought to my heart being the cause so I am very grateful for the quarterly remote checks. Stay connected with your cardiac team and if it doesn't feel right check it out.