Any disease that affects one person impacts the whole family. As caregiver and PF Warrior member Patti Vick says succinctly, pulmonary fibrosis is a family affair.
Patti is right. No matter where we are in our pulmonary fibrosis journey, there is one thing we all have in common: a variety of emotional reactions. Whether we are a patient or a caregiver— we may experience fear, uncertainty, and apprehension.
Most caregivers remember the first few months after a family member receives the pulmonary fibrosis diagnosis. They felt overwhelmed. From numerous physician appointments and multiple tests, scans, and exams the amount of new information can be confusing and unsettling. Unfortunately, there is little information about caring for someone with pulmonary fibrosis. And sometimes the resources that do exist feel incomplete.
A guide for caregivers by caregivers
Because there are no easy answers to caregiving for pulmonary fibrosis, a group of caregivers from PF Warriors came together to develop the Caregivers Guide to Living with Pulmonary Fibrosis. Their hope is to help make the journey a little easier for other caregivers.
To ensure that the caregiver guide is clinically sound, MeiLan Han, MD, and Deji Adegunosye, MD evaluated the content. Dr. Han is a pulmonary and critical care physician at the University of Michigan Health. Dr. Adegunsoye is a physician in pulmonology and critical care at the University of Chicago Medicine. After careful review, both agreed the guide is a good resource for families.
This guide could not have been written without the collaboration of healthcare professionals, patients, and caregivers. Our caregiver team volunteered their time to develop information that can’t easily be found elsewhere. Our thanks go out to Connie Kenter, Nancy Lee, Shelly Mathis, Suzy Norman, Kathy Porter, and Victoria Rychalsky.
What makes this caregiver guide different?
In talking with multiple caregivers, we heard that anxiety, restlessness, fear, and loneliness are common with their loved ones. As caregivers, they are willing to jump into this new role but struggle with feeling prepared. To ease those concerns, the Caregivers Guide to Living with Pulmonary Fibrosis includes:
- Information on how to transition to living with pulmonary fibrosis
- Tips on how to minimize infections
- Suggestions on how to make the home environment PF-friendly
- Checklist of items to consider after diagnosis
For families who have already been living with pulmonary fibrosis for some time, this Guide also provides tips and recommendations that may not be obvious for families with a pulmonary fibrosis patient, such as:
- How to manage coughs and home remedies to try
- How to ease gastroesophageal reflux (GERD) and common heartburn triggers
- Items to keep in mind when traveling with a portable oxygen concentrator
Just as Patti Vick describes pulmonary fibrosis as a family affair, our community is stronger together when knowledge and support are shared. We sincerely hope this guide reminds caregivers they are not alone and that the experience and support of others is reassuring and valuable.
The Caregivers Guide to Living with Pulmonary Fibrosis was created with the support from Three Lakes Foundation.