Pacemaker recipients: Looking for support from others

Posted by balubeje @balubeje, May 25, 2016

I am coming on a year post op having a pacemaker placement for bradycardia. I would be interested in a support group with the same concerns. I think a support network would be so beneficial.

Liked by Solo Act

Why?

REPLY

Hello @11241935,

Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward to hearing from you.

REPLY

im a member. my situation is a model 3300tfx Edwards aortic was installed 3 years ago. it is at 1.1 it has a flexible metal ring. can a larger trans valve be put in

REPLY
@leew1936

im a member. my situation is a model 3300tfx Edwards aortic was installed 3 years ago. it is at 1.1 it has a flexible metal ring. can a larger trans valve be put in

Jump to this post

It is best to confer with your cardiologist about that issue.

REPLY
@kanaazpereira

Hello @11241935,

Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward to hearing from you.

Jump to this post

Looking for how others fight the same fight. 18 months with a PM and living with I P F. On o2 24/7. I’m trying Esbriet now in hopes of getting the lungs stable. Get breathless walking 30 feet or so.

REPLY
@kanaazpereira

Hello @11241935,

Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward to hearing from you.

Jump to this post

Welcome @11241935,
I am not sure what a PM is or an IPF. I do hope you become stable very soon. I was breathless at that distance prior to my quad bypass a little over 2 years ago. My lungs were full of fluid and now not unless I skip the Bumex too many days in a row.

REPLY
@kanaazpereira

Hello @11241935,

Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward to hearing from you.

Jump to this post

I used PM as a short for pacemaker and the I P F is idiopathic pulmonary fibrosis. In short, I'm gonna leave this earth soon. 😇

REPLY
@kanaazpereira

Hello @11241935,

Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward to hearing from you.

Jump to this post

Thank you for that clarification.

REPLY

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?

REPLY
@kanaazpereira

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?

Jump to this post

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

REPLY
@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I’m tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don’t you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

Jump to this post

Hi Colleen, I have a pacemaker. @ gailfaith

REPLY
@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I’m tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don’t you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

Jump to this post

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.

REPLY

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

REPLY

Hello @lmclaugh,

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

REPLY
@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I’m tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don’t you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

Jump to this post

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/

REPLY
Please login or register to post a reply.