Editor’s note: A continuation of Charlene Marshall’s monthly “Gratitude Miniseries.” The goal of my “Gratitude Miniseries” is to write about the things I am grateful for that took place in the past month. I believe this will be an excellent narrative to look back on at the…
If you have read my previous columns, you may be aware of how much things have changed for me since my idiopathic pulmonary fibrosis (IPF) diagnosis. My current life is nothing like the one I had before, and that took me some time to accept. But I am…
Trying to stay fit is extremely important for a PF patient. This is easier said than done. It is difficult to lose weight when you don’t move a lot, and it is hard to exercise when you feel tired and worn out all the time. I’ll bet you…
When you are diagnosed with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), the choices about how you live your life suddenly becomes illuminated. Since IPF literally steals a patient’s ability to breathe, the prognosis of this disease is not very good, plus there is no cure.
As someone living with idiopathic pulmonary fibrosis (IPF), I have enjoyed connecting with others on a similar illness trajectory as me, as well as those living with different kinds of illnesses, including different forms of pulmonary fibrosis. We all have things in common, as well as things we…
About six weeks ago, I shared that I am under consideration by the University of California, San Francisco (UCSF) for a lung transplant. A few weeks ago, I got the good news that UCSF said YES to allow me to start initial testing to…
The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out…
Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.
As a pulmonary fibrosis patient, I try to stay as active as possible. But as my disease has progressed, it has been harder and harder to travel. Just a few days ago, my husband and I traveled 400 miles to see my 94-year-old father whose health is failing.
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be…
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