Tuesday, October 1, 2013

Should I join a Pulmonary Fibrosis support group?

Kathy Lindell, the nursing manager for the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh is guest blogging today on our site on the importance of joining a Pulmonary Fibrosis support group. Kathy serves on the Medical Advisory Board for the Pulmonary Fibrosis Foundation and actively participates in the clinical care of patients with Pulmonary Fibrosis. Please share this with loved ones and friends and leave comments and questions for Kathy.
- David Lederer, MD

Kathleen O. Lindell, PhD, RN

Should I join a Pulmonary Fibrosis support group?
Kathleen Lindell, PhD, RN
Research Assistant Professor
Division of Pulmonary, Allergy, and Critical Care Medicine
Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease
University of Pittsburgh, Pittsburgh, PA


Hi everyone! I am thrilled to be a guest blogger on Dr. Lederer's website. As a reminder, this post represents my personal views, not those of the University of Pittsburgh.

Attending a Pulmonary Fibrosis support group is a crucial part of helping you and your caregiver(s) adapt to the many unknowns that come with a diagnosis of Pulmonary Fibrosis. The disease course of Pulmonary Fibrosis is variable, so there is no set timeline on how the disease progresses.  There is no way to predict your future, and this can cause a great deal of angst and fear of the unknown for you and your caregiver(s).

The support group should provide information so that you can learn more about your disease; topics might include:

  • What is Pulmonary Fibrosis?
  • Importance of Exercise
  • Use of Home Oxygen
  • What are the treatment options?
  • Is a lung transplant the right thing for me?

The support group members can provide you with a home where you can get help with the day-to-day life of IPF;  explaining what IPF is to your family/friends, how to travel with oxygen, etc. The benefits of attending an IPF support group include meeting other people who are going through exactly what you are going through.

Maybe you’re not the type who would attend a support group? We advise our patients (and actually write a prescription) to attend at least once and then make their own decision if it’s for them.

Maybe you do not have a support group near you. There are on-line support groups that are easy to join. Here is a link to see if there’s a support group near you or how to join an on-line support group.  http://www.pulmonaryfibrosis.org/supportgroups

Our experience has been that this disease is not patient friendly. I wish I could say it was.  BUT, our experience has also been those who attend and participate in support group live better with their disease because of their interactions with other patients and caregiver(s) who are going through the same journey.


  1. I believe it's Courtney that keeps the PFF Support Group list up to date. However, your list is only for the US. Does PFF have any plans to incorporate a list for other countries such as Canada?

  2. We keep our list up to date but don't get any information from Canada. (although requested) We have incorporated the lists of both the Coalition and the Foundation - http://ipftoday.com/support_groups__us_states__international

  3. Hello Thank you for this opportunity. Can you tell me if lung pain, lower right side, is common. It is its worse when laying down and getting back up. I cant seem to find any info on what it is
    , and if it is a normal part of pf. It has gotten extremely painful and i can no longer cope with out meds Thank you Don

    1. Dear Don,

      I sense your frustration and suggest that you seek evaluation from your health care provider to be seen and have this evaluated. I would recommend to keep a diary of when it's occurring, rank it on a scale of 1-10 (10 being worse), and provide your health care provider with this information at your appointment. Good luck.

    2. Thank You I will !

  4. Hi Kathy.. thanks for the blog! Since my actual diagnosis of IPF this year I have searched out support groups. The two online groups I use are wonderful and I have learned so much from the experience of others. I also found Dr. Lederer's site so helpful and the only one of it's kind! I come here alot to see if the good Doctor has posted something new.
    There is only 1 face to face support group in my state and it's done quarterly. That for me is very sad. In talking to the nurse who took my information for Pulmonary Rehab I am trying to get her to start a support group monthly :-) Maybe with a little more pushing and begging it may work
    Thanks for your input, we with ILD / IPF really really need all the information we can get

  5. Thank you to Dr. Lindell & Dr. Lederer for discussing how important support groups are for the PF community. No one should feel alone with this disease. There are many communities, both online and in-person, to help connect patients, caregivers, and family members for support and information.

    Barbara, the PFF does have some international support group listings. If you go to: http://pulmonaryfibrosis.org/supportgroups/local and scroll down you will see two listings in Canada (Calgary & Edmonton) as well as groups in Ireland, Italy, and the UK. I do try to keep this page as up-to-date as possible!

    Laura, I am happy to help the nurse at your pulmonary rehab get a PF support group up and running. The PFF has created tools to help create and run support groups, as well as support the support group leaders! Please contact me, or pass along my information: cfirak@pulmonaryfibrosis.org or call 888.733.6741

    1. Thanks Courtney! I am hoping to see her next week and will ask her again and give her your information. :-)

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