Any patient living with a chronic illness is familiar with the topic of self-care. It’s something that many of our medical team members, especially the allied healthcare professionals, talk to us about. But practicing self-care is not always as easy as it sounds. It has taken me nearly…
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At 12:06 a.m. on Dec. 3, 2015, the much-anticipated phone call came. I knew what the call pertained to as soon as I saw the first digits on the phone’s screen. The caller identified himself as a nurse coordinator from Cleveland Clinic’s Transplant Center and then handed the phone over…
It’s cold and flu season, and unfortunately, people with idiopathic pulmonary fibrosis (IPF) and compromised immune systems are bound to get sick. Despite our best efforts, it is likely that we’ll end up with the flu, a cold, or a more serious respiratory illness such as pneumonia. It…
Last week I wrote about how difficult it is to face reality as my pulmonary fibrosis progresses. This process has involved letting go of control as I face how little I can do now. The most striking example of…
Last year, I wrote a gratitude miniseries reflecting on the positive things that took place each month. While I am not continuing that miniseries this year, I did reflect on why this month was so great for me after a colleague commented on how at ease I looked…
Shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis, my doctor and I had a discussion about employment. While he supported my desire to work at the time, he was very open with his concerns about my ability to do so as my disease progresses. While he couldn’t…
Letting go of something or someone is hard for all of us. We often face forks in the road where we realize we need to let go of people, expectations, plans, relationships, pain, and a whole lot more. This is especially true for pulmonary fibrosis (PF) patients and…
Talking about lung transplantation is frightening. It was scary when it was initially introduced following my diagnosis nearly three years ago, and it continues to be difficult to talk about. This is despite all that I’ve been through with my disease progression over the years. Recently, I talked…
It’s no secret that I love to travel. Upon receiving my idiopathic pulmonary fibrosis (IPF) diagnosis in 2016, my biggest fear was that this cruel lung disease would take away my physical ability to explore the world. While IPF has certainly changed how I travel, I am grateful…
All pulmonary fibrosis patients require supplemental oxygen as our disease progresses. As scarring in our lungs worsens, we need extra oxygen to stay alive. Starting using oxygen I was shocked when my doctor told me that I needed to use supplemental oxygen, which involves rolling a tank around…
