All pulmonary fibrosis (PF) patients go through hardships. We watch our lungs and health decline and we suffer emotional pain as we process our foreshortened lives. Grief becomes a companion as we emotionally process all we endure. This disease takes a toll on us. Talk to yourself with…
Because I was diagnosed with a chronic illness at 28 years old, I have received many different reactions to the news. Most people are well-intentioned, some don’t know what to say, and others share common reactions that one might expect when something unfortunate happens. I experienced a lot…
After I was diagnosed with pulmonary fibrosis, I began evaluating the best way to spend the precious time and energy I have left. Against a backdrop of grief, I made a list of the things I wanted to complete before I passed. Some goals involved increasing…
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…
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