That was me, sharing and caring, even hospitalized and in isolation

Have you ever wondered what a columnist for Pulmonary Fibrosis News does while being hospitalized for 17 days? First, I focused on getting better. Second, I asked many questions of those caring for me. Finally, as I met other medical specialists, I asked them what they knew about Bionews and its publications on rare diseases. We all just want to be better informed, after all.

My idiopathic pulmonary fibrosis (IPF) wasn’t diagnosed immediately; rather, it was a diagnosis of exclusion. My primary care provider recognized that I had an interstitial lung disease, but she hadn’t encountered IPF. Still, she made all the right choices and referrals to ensure my timely diagnosis in January 2017, and I received a bilateral lung transplant in July 2021.

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Managing my care

I have done well in the five years since my transplant. I’ve been hospitalized twice for several days at a time, and in both cases, my care was primarily provided by my team at Inova’s Advanced Lung Disease and Transplant Center. This stay was different, with a diagnosis of shingles primarily in my left calf and foot.

My transplant team closely monitored my lung health during my stay, and an infectious disease team treated my shingles, which had blistered in an arc over the top of my foot and along the lower ankle and sole. This resulted in being placed in isolation, and anyone who entered was required to wear a gown and gloves.

Pain management specialists introduced a ketamine drip to help control my pain. Ketamine is a powerful anesthetic that can also cause hallucinations. After several days, I asked that it be stopped, and my team replaced it with a combination of Tylenol (acetaminophen) and tramadol, an opioid analgesic. A very small amount kept my pain manageable.

My primary pain was associated with nerve endings, creating sudden and intense shooting pains down my left leg to the end of my toes. A team was also assigned to conduct a lumbar puncture to ensure no other infections had been missed.

With the number of intravenous (IV) drips I was receiving, my veins struggled to keep up. My team decided to put a port in my neck with multiple lines to allow for IV drips and blood draws.

Advocating and educating

This visit was also an opportunity to discuss Bionews, the publisher of Pulmonary Fibrosis News and other rare disease publications. Armed with my laptop, I introduced the medical staff to my column, “Make Every Breath Count.”

The best teaching moments came by accident. Inova is a teaching hospital, and the neurology students were invited to assess my neurological status related to the pain from shingles. This gave me the chance to find out what they knew about ataxias, and I introduced them to Friedreich’s Ataxia News. I even got to talk briefly about the importance of the patient’s voice in medical care.

Before IPF, I was heavily involved in the ataxia community and served as president of the National Ataxia Foundation‘s board of directors. Three of my stepsiblings passed away from spinocerebellar ataxia type 3. If even one of these medical students takes an interest in ataxia, I see it as a win.

I do not recommend a 17-day hospital stay, but this one was necessary for me. I do feel like I turned lemons into lemonade, especially when speaking with the neurology students. It helped me make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.