Having pulmonary fibrosis can be an emotional rollercoaster. Friends and family are likely unfamiliar with the disease. It may be difficult to discuss your situation with others. As everyday activities gradually become more challenging, you may need to stop working and ask for help. You may feel angry, stressed, depressed and alone. These resources are intended to help you explore the things you can do to manage your pulmonary fibrosis and live more fully.
Nutrition
Managing Side Effects of Medications Through Nutrition
In May 2021, members of the Toronto Support Group welcomed Sarah Dales, Registered Dietitian in Transplant, Toronto General Hospital, University Health Network and Deepanshi Salwan a nutrition student and Master of Public Health candidate at the University of Toronto to their monthly Zoom meeting. Dales and Salwan shared a presentation with the group on how nutrition can help mitigate the side-effects of medications.
UHN Tip Sheet – Nutrition Tips While on Prednisone
Mental Health
Resources for Sleep, Self-care, Mental Health and Mindfulness Meditation.
Palliative Care at the End of Life – Health Quality Ontario
This information is meant for Ontario residents, but it does include useful information no matter where you live. If you are aware of other similar programs in your region, please forward a link and we will include them in this section.
Healthy Living
Resources for Sleep, Self-care, Mental Health and Mindfulness Meditation.
Support Groups
CPFF Support Groups
THIS MAY LINK TO A SEPARATE PAGE (5.1 support groups)
British Columbia
Alberta
Manitoba
Saskatchewan
Ontario
New Brunswisk
Newfoundland
Prince Edward Island
Newfoundland
Patient Groups and Organizations
Coalition for Pulmonary Fibrosis
Canadian Thoracic Society (CTS)
Canadian Organization for Rare Disorders
National Organization for Rare Disorders (NORD)
EURODIS (European Organisation for Rare Diseases)
Mesothelioma Guide (United States)
RareConnect.org (Partnership of EURODIS and NORD)
Papworth Hospital Interstitial Lung Disease service (United Kingdom)
Irish Lung Fibrosis Association (ILFA)
ILFA information sheet for oxygen use with PF
Longfibrose VZW (Belgium)
Lungenfibrose eV (Germany)
Ama Fuoridalbuio (Italy)
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI) (Spain)
Longfibrose NL (Netherlands)
Living with PF Helpful Links
Benefits
Information on IPF
UHN IPF Information for patients and families
inIPF.com by Boehringer Ingelheim
Pharmaceutical Treatment Information
UHN Handout – Pirfenidone (Esbriet™) – Information for patients
UHN Handout – Nintendanib (OFEV™) – Information for patients
Resources for Sleep, Self-care, Mental Health and Mindfulness Meditation
Air Travel When You Have a Lung Condition
People with lung disease and other pre-existing conditions often find challenges for travelling especially flying and travelling outside their country. From time to time, we will provide links or information that we hope you will find useful.
Have a look at these tips from the International Association for Medical Assistance to Travelers (IAMAT)
Calculating the Cost of Medical Device Electricity Use
- Look at the label on your concentrator or other medical device that you are using. It states the number of volts and amps the concentrator uses. If not found on the concentrator, look for it in the manual or ask your oxygen provider.
- As an example, we will use 115 volts at 4 amps. To convert to watts (W), multiply volts and amps: 115 volts x 4 amps = 460W.
- Next, calculate the number of kilowatt (KW) hours you use per year. Multiply the watts your concentrator uses by .001 KW/W to convert watts to kilowatts. In our example, 460W x .001 KW/W = 0.46KW.
- Multiply this answer by 24 hours/day x 365 days/year if you are a continuous user. If you do not always have your oxygen on, multiply by the average number of hours used per day and then by 365 days/year.
- To continue the example, 0.46KW x 24 hours/day x 365 days/year = 4,029.6 KWH/Y. This is the kilowatt hours you have used to run your concentrator the past year.
- Now, multiply the above result by the cost per kilowatt hour your electric company charges you. It may be listed on your bill or you could call their office. Let’s say they charge you 8 cents per kilowatt hour (prices will vary widely depending on the region in which you live). To finish our example: 4,029.6 KWH/Y x $0.08 = $322.37. This is the amount you paid for electricity to run your concentrator and can deduct as a medical expense.
International Patients
The CPFF receives a number of inquiries from IPF patients around the world who want to get access to Esbriet, where it has not yet been approved in their country – as patients want to know if it can be prescribed for them in Canada.
The University Health Network, through Toronto General Hospital, has an International Patient Service that can be accessed at: https://www.uhn.ca/IHP/International_Patients
Patient Groups and Organizations from Around the World
Coalition for Pulmonary Fibrosis
Canadian Thoracic Society (CTS)
Canadian Organization for Rare Disorders
National Organization for Rare Disorders (NORD)
EURODIS (European Organisation for Rare Diseases)
Mesothelioma Guide (United States)
RareConnect.org (Partnership of EURODIS and NORD)
Papworth Hospital Interstitial Lung Disease service (United Kingdom)
Irish Lung Fibrosis Association (ILFA)
ILFA information sheet for oxygen use with PF
Longfibrose VZW (Belgium)
Lungenfibrose eV (Germany)
Ama Fuoridalbuio (Italy)
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopática (AFEFPI) (Spain)
Longfibrose NL (Netherlands)