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.

Interested in more discussions like this? Go to the Pacemaker & ICDs Support Group.

leew1936 | @leew1936 | Sep 18, 2017

In reply to @kanaazpereira "Hello @11241935 Thank you for sharing; we're so glad you've joined us on Connect. I'd like..." + (show)

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

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 18, 2017

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?

eileena | @eileena | Sep 18, 2017

In reply to @kanaazpereira "Hello @11241935, Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward..." + (show)

Thank you for that clarification.

Thomas1124 | @11241935 | Sep 18, 2017

In reply to @kanaazpereira "Hello @11241935, Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward..." + (show)

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. 😇

eileena | @eileena | Sep 17, 2017

In reply to @kanaazpereira "Hello @11241935, Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward..." + (show)

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.

Thomas1124 | @11241935 | Sep 17, 2017

In reply to @kanaazpereira "Hello @11241935, Welcome! May I ask what brings you to Mayo Clinic Connect? We look forward..." + (show)

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.

eileena | @eileena | Sep 17, 2017

In reply to @leew1936 "im a member. my situation is a model 3300tfx Edwards aortic was installed 3 years ago...." + (show)

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

leew1936 | @leew1936 | Sep 17, 2017

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

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 17, 2017

Hello @11241935,

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

Thomas1124 | @11241935 | Sep 16, 2017

Why?

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