As a young person living with idiopathic pulmonary fibrosis (IPF), I am scared of many things. However, I don’t get into the habit of voicing my fears of what this disease is ultimately going to cost me, but sometimes, I must talk about them. There is a lot…
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Most of us receive our medical care from our primary care doctor or a local pulmonologist. However helpful they may be, they don’t know everything about the rare disease that we have. Four years ago, the first pulmonologist I saw told me I had a few months to…
Any chronic illness diagnosis is scary and confusing. It is a time filled with an abundance of emotions that are difficult to navigate. Unfortunately, these emotions don’t exist only for the first few months after a diagnosis, but rather they remain ever-present as a patient learns to live…
I’ll be transparent: Living with a chronic illness sucks, regardless of the disease you deal with. It’s not easy learning to navigate life while sick, and unfortunately, there is no rulebook to study. I can only speak for all the difficulties that come with having idiopathic pulmonary fibrosis…
Being diagnosed with pulmonary fibrosis is not for the faint of heart. It is a rough road full of fears, losses, and unknowns. It’s difficult getting used to all that comes with this diagnosis, including lots of up and downs, tears, disbelief, and attempts to adjust. Taking good care…
Editor’s note: A continuation of Charlene Marshall’s monthly “Gratitude Miniseries.” Similar to my “Gratitude Miniseries” column for April, July was not one of my favorite months this year. While some good things happened, which I will highlight below, I had to navigate many social and emotional challenges…
About three months ago, I bought a used treadmill and started exercising at home. I used to go to pulmonary rehab three times a week. As my disease has progressed, going to pulmonary rehab has become too tiring for me. Just getting there and back as well as…
Following a diagnosis of a life-threatening illness like idiopathic pulmonary fibrosis (IPF), days filled with happiness and gratitude can rare. After my own IPF diagnosis in early 2016, I had many days of confusion, anger, and fear of what my life as a young adult would look…
Following my idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I was told that the doctors couldn’t predict how fast or slow my disease would progress. Since it was so “rare” that I had IPF before my 30th birthday, my medical teams were pretty transparent about not…
Just like you, I’ve had my share of good experiences with doctors, and frustrating ones, too. I wish I could share some tips with doctors to help me cope with this awful disease. I’ve asked fellow patients I know online for their input, and they had a lot…
