My emergency ‘go bag’ checklist for a transplant hospitalization

I conduct research for each of my columns primarily because I want a broader perspective on a topic. Recently, I discussed what should be packed in a “go bag” for a transplant patient receiving the call that donor lungs are available. When I typed “transplant go bag” into a Google search bar, the first result was an Amazon listing for a “human organ transplant bag.” (Most of the other results were just lunch boxes.)

When I was diagnosed with idiopathic pulmonary fibrosis, I had to process a lot of information. After consulting with my care team, I decided to pursue a lung transplant. So I needed to figure out what to take to the hospital when I received the call. I spoke with my care team, patients who had already received a transplant, and caregivers. The responses I received were as varied as the individuals providing the information.

All of their answers were valuable. I gathered a lot of information about what should be included in my go bag. I’d like to share what I packed, as well as what I actually used.

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What I packed

When I started packing my bags, I had two considerations: I was preparing for both a potential dry run and the actual transplant.

When I got the call that donor lungs were available, there was no way to tell if it was a dry run or the real thing. In a dry run, I would go to the hospital prepared for a transplant, but the viability of the donor lungs would later be evaluated, possibly determining that the lungs were not suitable for transplant either in general or specifically for me. If it were a dry run, I would be sent home.

For the dry run preparations, I packed my go bag, ensuring that I included any necessary medications for the return trip home. Additionally, I needed sufficient oxygen to return home safely.

I received the call that lungs were available on July 9, 2021. It was not a dry run; I had a double-lung transplant on July 10.

In my go bag, I included a change of clothes, toiletries, my iPad, and a sense of patience. I knew I wouldn’t need multiple wardrobe changes since I was going straight to a hospital room, where a hospital gown, bright yellow nonslip socks, a hair cover, and two bottles of antibacterial soap awaited me.

A nurse wrote a schedule on the message board in my room. I was instructed to take a shower using the provided soap, put on the gown and socks, and then repeat the process several hours later. I did not open my go bag until about a week later.

What came later

I realized there were other items I would want that weren’t necessary in my go bag. My wife, Susan, and I had set those items aside but didn’t bring them to the hospital.

A homemade quilt made by columnist Sam Kirton’s mother-in-law was a welcome touch during his post-transplant recovery. (Courtesy of Sam Kirton)

When I was admitted, Susan took control of my phone and didn’t give it back until the anesthesia and pain medications wore off. She also brought my laptop, so I could stay connected with family and the community that supported us throughout our journey. My iPad, which I use for reading e-books, was a luxury that helped keep me occupied. Naturally, chargers for my electronics were also essential.

Another item we had set aside was a quilt. Susan’s mother, Esther, made a quilt for me in anticipation of the day when the right lungs would become available. While I couldn’t use it in the intensive care unit, it was comforting to have when I moved to a step-down unit in the hospital.

There is no single correct answer to what should be packed. We live about 89 miles from Inova Fairfax Hospital in Virginia, and our community stepped in to help if we needed something from home. My transplant occurred during the COVID-19 pandemic, so only Susan was allowed to visit me. I was discharged 10 days after the transplant.

During those 10 days, I wore a hospital gown, yellow socks, underwear, and a mask when I left my room to walk around the unit. I was able to brush my teeth and take a shower in the final days of my hospital stay. I didn’t need the change of clothes until the day I left the hospital.

I hope this information is helpful. If you’re awaiting a transplant, pack what you believe is right for your situation, and then you can start your post-transplant journey and 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.