10 Tips to Manage PF

Managing the symptoms and side effects caused by pulmonary fibrosis (and its related treatments) is inevitable for all PF patients. Here are some tips for coping with them.

 

1. Exercise and stay active.

Exercise and keeping active is extremely important in managing your pulmonary fibrosis.  Lisa Wickerson, a physiotherapist at the Toronto General Lung Transplant Program has kindly provided an Exercise and Pulmonary Fibrosis Guide (pdf) that you can use for exercise, especially early in your disease.  Be sure to discuss these guidelines with your doctor to ensure that he/she doesn’t have any concerns about you safely following these exercise suggestions.

You can also enroll in a pulmonary rehabilitation program. Respiratory or Pulmonary Rehabilitation can be a very important part of managing your pulmonary fibrosis. Talk with your doctor about enrolling early in your diagnosis to gain the earliest benefit from the education and activities that you will receive — important information on your disease, breathing, and exercising.

 

2. Use your oxygen as directed.

The body’s functions all depend upon delivery of a steady supply of oxygen. Because PF decreases the transfer of oxygen into the blood stream, some patients may require additional oxygen to reduce breathlessness. This allows patients to be more active.

Some patients may need oxygen therapy all the time, while others may only need it for exercise or normal living exertion. Some may not need it while asleep. A personal oximeter can be useful for monitoring when you should be using oxygen.

By testing the saturation level of oxygen in a patient’s blood, a physician can determine if a patient requires supplemental oxygen.

 

3. Always take your medicine as your doctor prescribed.

Treatment options for PF depend on the underlying etiology.

It is important that you follow the treatment plan that your doctor set you on. Depending on how you respond to your treatment plan, your doctor may make some changes to it.

 

4. Quit smoking and avoid second-hand smoke.

Smoking is one the worst things you can do if you’re living with PF, as it can potentially worsen your disease and exacerbate your symptoms. If you still smoke, stop immediately.

If you have family or friends that smoke, ask them to not do it around you.

 

5. Get vaccinated against respiratory diseases.

Make sure to get your seasonal flu shot.

Talk to your doctor about whether or not you can benefit from the pneumonia vaccine.

Stay up-to-date with your COVID-19 vaccines. Find out if you’re eligible for a booster dose.

 

6. Eat well-balanced and nutritious meals and maintain a healthy body weight.

It is important to eat well, as it will give you energy to:

  • Breathe
  • Fight infections
  • Cope
  • Maintain or improve weight and strength
  • Corry out activities of daily living

 

It is also important to maintain a healthy body weight.

Being overweight:

  • Can make breathing difficult
  • Increases risk of co-morbidities, such as diabetes, hypertension and heart disease
  • Impacts quality of life

Being underweight:

  • Decreases energy levels
  • Increases susceptibility of infection
  • Impacts quality of life

 

If your medication is causing you to have nausea, lack of appetite and/or diarrhea, you can watch these presentation slides on how nutrition can help mitigate the side-effects of medications.

 

7. Listen to your body, don’t over exert yourself.

Get plenty of rest and take short naps.

Ask others to help with tasks such as grocery shopping or cleaning.

 

8. Join a support group.

PF support groups play an important role in helping individuals living with PF, their families and friends better understand the disease and their options to deal with its mental and physical impact.

It can help you feel less lonely and isolated, while giving you an opportunity to share your journey and to learn from other’s journeys.

 

9. Plan ahead of time.

Specially if you are going away from home for extended periods of time, be prepared.

Are there elevators where you are going?

Will there be a lot of hills or stairs to climb?

Do you have enough oxygen and medication?

Planning ahead will help you converse your energy and live your best life.

If you haven’t already, you can watch Ron Flewett’s webinar where he speaks about his PF journey, including how planning (and determination) allowed him to travel the world.

 

10. Ask for help if you’re not feeling well.

 

Don’t hesitate to call your doctor if you’re experiencing new or worsening symptoms, such as chest tightness, pain, fever or trouble breathing.

 

 

Canadian Pulmonary Fibrosis Foundation does not provide medical advice, diagnosis or treatment. Our website is strictly information and news about the disease. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.