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Portrait of Joyce, a patient living with IPF

Meet Joyce

Joyce Bell was in great shape for a woman of 68. Or so she thought. That illusion was shattered when her bicycle rides got cut short by breathlessness.

A routine chest x-ray showed scar tissue on the lower lobes of her lungs. She had never smoked, and never had pneumonia. When Joyce sought medical advice, she heard the words no one ever wants to hear: It’s Sclerodoma, an autoimmune disease, in which an overactive autoimmune system can lead to Interstitial Lung Fibrosis. These are a few of the things that IPF has taught her.

1. Believe in miracles.

Joyce was told that they could not forecast the speed at which the Pulmonary Fibrosis would progress; there was no effective treatment for it.  A lung transplant would not be possible because of the autoimmune involvement. “Research suggested that, in a worst case scenario, I might have 3 to 5 years.” Just for the record, that was 12 years ago.

2. Learn to live with the pressure.

One of the issues with Interstitial PF is Pulmonary Hypertension where the blood pressure in the artery from the heart to the lungs increases due the difficulty in pumping blood to damaged lungs. The pressure in Joyce’s pulmonary artery has been monitored over the years via the echo cardiogram. “Medications have been prescribed to hopefully increase the blood flow to the lungs to possibly improve my breathing.”

3. Go make a splash.

In chest deep water, the forces of gravity are eliminated allowing Joyce to move with ease to her great delight. “I highly recommend water exercises, but anything that gets you moving in water or on land will help you breathe a bit easier.”

4. Find the joy in those little, little things.

For Joyce, the most rewarding moments are often simple ones: the privilege of being able to park in handicap spaces; the freedom to drive around attached to her portable oxygen; cooking and baking in the kitchen; a good book; working on the iPad/computer; doing genealogical research.

5. Appreciate the need to lean on other people.

IPF showed Joyce how family and friends rally around to support you in ways you could never imagine. Joyce will be everlastingly grateful to her thoughtful family who are so helpful with the tasks that have become difficult.