Living with Pulmonary Fibrosis

Helpful Links

Information on IPF

Pharmaceutical Treatment Information for PF

Living Well with PF

Living Well with Pulmonary Fibrosis, by Respiplus™ — New online tool to help patients and healthcare professionals improve the management of pulmonary fibrosis. The tool concentrates on eight different modules:
• Dealing with a diagnosis
• Adopting and maintaining a healthy lifestyle
• Treating Pulmonary Fibrosis
• Managing the impact of Pulmonary Fibrosis
• An action plan for when symptoms get worse
• Get moving… Breathe Easy with Pulmonary Fibrosis
• Integrating Long-term Oxygen therapy
• Pulmonary Fibrosis and End of lifeThis platform was developed by physicians, researchers who specialize in respiratory health, in collaborations with the CPFF, Quebec Lung Association, and the Quebec Network for Education in Respiratory Health. If you have any questions or comments, please direct them to: Living Well with Pulmonary Fibrosis.

Patient Groups and Organizations

Calculating Electricity Costs

Calculating the Cost of Medical Device Electricity Use:

1. 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.

2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

Travel

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.

Travel Insurance

From the December 2014 issue of the Hope Newsletter, a newsletter for lung transplant patients, Travel Insurance for Pre-Existing Conditions. Thank you to Ann McGuire for kindly sharing this information with our PF community.

Air Travel When You Have a Lung Condition

The European Lung Foundation (ELF) and the European Respitory Society (ERS) have put together this informative guide:

http://www.europeanlung.org/assets/files/en/publications/air-travel-web.pdf

 

Palliative Care

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.