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Do you attend PF support groups
Do you regularly attend support group meetings? Why or why not?
I was skeptical about support groups in the beginning. I had to find the right one. Today I lead a support group and co-lead the PFF Lung Transplant Community Support Group.
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9 Replies
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We regularly attend a local support group that meets by zoom, since covid, a few years ago. The meetings were monthly in a local hospital before that. We have met several couples and have developed friendships. Our group has caregiver luncheons and a yearly fundraising walk in a local park. It has been a godsend. Everyone is so kind and we help one another with suggestions of doctors and hospitals to see.
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You have captured the benefit of support group participation beautifully.
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Hi. Are you still conduction support group sessions? Would be interested in getting information on these. Thank you. Brian Dickinson
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Hi Brian,
My group is Coffee Among Friends. You can find contact information at https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/find-medical-care/care-center-new/coffee-among-friends.
Sam…
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Thanks!
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I have not missed a support group in over 2 years, pre and post. One of the most important things to do for your self awareness, education and recovery, Stay Away from Dr, Google and go to a support group every week. It WILL change your life!!
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I belong to PF Warriors. They have a Facebook page and a web site. There are people from all over the world. They have monthly Zoom Meetings that are very informative with experts in the field. All the info is accessible from the web page. I highly recommend joining…… PF WARRIORS
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I’ve been attending a local support group since my diagnosis in 2015. We were meeting in the hospital and had a number of speakers, which I found very informative & helpful. Since Covid we have monthly meetings by Zoom with limited speakers. Our participation has dwindled, & I’m no longer finding the meetings very helpful, because we primarily discuss our “journey” each month and there is no new information.
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The American Lung Association has a support group called INSPIRE. Login to INSPIRE.COM create an account. I have found many answers and advices pertaining to PF. I have ILD which is close to IPF. Give the site a try to see if you like it and meets your needs.
Thank you.
PJOHN
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