As I sit down to write this column, I am having a difficult day. Following a recent column about vulnerability, I heard from many readers who said my words encouraged them to express their own vulnerabilities. As a result of that feedback, I want to share that today I…
Columns
Last week, we celebrated the one-year anniversary of my mom, Holly, getting on the lung transplant list. If you’ve been a reader of mine for a while, you know that getting on the list was not a smooth process for us. She was pretty…
At my last doctor’s appointment, my physician asked me how I felt. I replied, “Some days, I feel invincible.” She gave me the biggest smile and told me how happy she was that I was doing so well. While I get colds and sometimes contract a virus, when I…
An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…
I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…
You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless. PF affects much more than the ability to breathe — it also…
One of my most vivid memories of my late friend Serena Lawrence is when we sat down to discuss my becoming a columnist for Bionews Services. I’d just been diagnosed with idiopathic pulmonary fibrosis (IPF), a lung disease characterized by fibrosis in the lungs that prevents oxygenation. Serena wrote…
I’ve never been hospitalized for more than a day, but I have spent a fair amount of time visiting others. Even though it’s sometimes hard to show up, I always make an effort. The last thing I want is for my people to feel abandoned when they are coping with…
I enjoy the holiday season, especially Christmas celebrations. As my siblings and other family members were born in Poland — I am the only one born in the U.S. — we follow a traditional Polish Christmas, holding most of the festivities on Christmas Eve, or Wigilia. Special foods are…
