Dear PF NOW! Participants,

 

Thank you so much for attending support group with PF NOW! As promised, here is a follow up from the conversations we had as a group:

 

More about a PF diagnosis:

• Debunking myths about the diagnosis, prognosis, and more: https://pulmonaryfibrosisnow.org/2021/09/24/myths-about-pulmonary-fibrosis/
• Reasons why PF is so difficult to diagnose: https://pulmonaryfibrosisnow.org/2020/04/03/4-reasons-why-pulmonary-fibrosis-is-so-hard-to-diagnose/

 

Symptoms & side effects:

• PF symptoms: https://pulmonaryfibrosisnow.org/tag/symptoms/
• Coughing: https://pulmonaryfibrosisnow.org/2021/08/25/faqs-about-pf-part-2/
• To help with coughing, people in support group recommended Biotin (to address the dry mouth), chewing sugarless gum, and drinking LOTS of water
• Tips to help with side effects from medications like OFEV or Esbriet: Foods to Help with Side Effects from Pulmonary Fibrosis Medication | PulmonaryFibrosisNow.org

 

Inflammation & immune health:

• Full list from our special education week:​https://pulmonaryfibrosisnow.org/?s=Inflammation

 

Natural therapies:

• Full list (discussing options like acupuncture) at​https://pulmonaryfibrosisnow.org/category/natural-therapies/
• More about herbs & supplements:​https://pulmonaryfibrosisnow.org/2020/10/07/dietary-supplements-to-help-with-pulmonary-fibrosis/
• Systemic enzymes (the dietary supplement that one of the participants mentioned):
  • General info: https://pulmonaryfibrosisnow.org/learn/systemic-enzymes/#systemic
  • Related blogs: https://pulmonaryfibrosisnow.org/tag/systemic-enzymes/
  • Our research: https://pulmonaryfibrosisnow.org/our-research-3/

As always, please consult with your healthcare team before making changes to your treatment plan. Please note that systemic enzymes have a mild blood thinning effect & should not be taken for those already on blood thinners. 

 

Nutrition & gut health:

• Full list:​https://pulmonaryfibrosisnow.org/tag/nutrition/

 

Self-advocacy:

• Keeping track of symptoms & appointments: https://pulmonaryfibrosisnow.org/?s=recordkeeping
• For pulse oximeters, participants recommended ordering online (from Amazon, for example). A couple brands to consider are Inova and Zac V Rate.
• Finding the right care at the right time: https://pulmonaryfibrosisnow.org/tag/advocacy/

 

Lung transplants:

• https://pulmonaryfibrosisnow.org/tag/transplant/

 

For those who are relatives and/or caregivers:

• Relatives: https://pulmonaryfibrosisnow.org/tag/family/
• Caregivers: caregivers | PulmonaryFibrosisNow.org

 

Tips to help with mindset and anxiety:

• List of blogs about mindfulness & meditation: https://pulmonaryfibrosisnow.org/tag/meditation/
• List of blogs about mental health: https://pulmonaryfibrosisnow.org/tag/mental-health/

 

Please let us know if you have any questions or if there’s anything we can do to support you. We hope to see you at next month’s meetup on Tuesday, April 12^th. Until then, you can always stay in touch with participants by posting in our community group at Pulmonary Fibrosis NOW Group | Facebook.

 

Thanks again for attending and supporting each other.

 

Kind regards,

 

Sarah Callif

Assistant Director

Pulmonary Fibrosis NOW!