Those who follow my column know that one of my passions is cooking. It always has been. My wife, Susan, and I usually eat meals I prepare using little to no prepackaged ingredients. Dinner usually included wine for me.
But what I can eat and drink changed on July 10, 2021, the day I received my bilateral lung transplant.
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It was not a surprise
When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, we entered a world that was new to us. We wanted to better understand this disease, so we sought to learn as much as possible. My care team at Inova Fairfax Hospital in Fairfax County, Virginia, was an essential part of our pursuit of knowledge.
It was a team approach. A registered dietitian is a part of the team, offering nutrition classes, nutrition counseling, and patient education. Social workers host monthly transplant education sessions on a variety of topics including insurance coverage, medications, pulmonary rehabilitation, and post-transplant diet.
During transplant evaluation, a joint session is hosted by both pre-transplant and post-transplant nurse coordinators. They covered everything from being prepared for the call with an offer for new lungs to things to avoid after transplant.
In our home, we already prepared meals, for the most part. (Although I’ll admit, on occasion, there is nothing like a frozen pizza.) We committed food restrictions to memory.
After receiving a transplant, I was discharged from the hospital 10 days later, on July 20, 2021. For the first several months, we ate only meals that we prepared at home. Buffet restaurants and salad bars were off limits. Diners serving themselves in front of you may not have taken proper sanitary precautions such as washing their hands, or they might have a cold.
Some specific foods, such as pomegranate and grapefruit, were to be avoided, as they might have a negative interaction with post-transplant medications. Fresh fruits and vegetables had a specific cleaning protocol. Eating them outside the home became problematic, since I didn’t know whether cleaning protocols were followed.
Consuming raw and undercooked foods should be avoided. Meats should be cooked to specifically recommended temperatures. Foods such as sushi and sashimi, which contain uncooked seafood, should be avoided. Eggs should be completely cooked — no more over-easy eggs for breakfast.
The consumption of alcohol wasn’t allowed post-transplant. Wine with dinner every evening became a thing of the past for me. My last glass of wine was on July 8, 2021. Now, if we are hosting or attending a dinner party, my wine glass is typically water with bubbles.
Things we learned
Susan has become adept at cleaning fresh vegetables and fruits by using apple cider vinegar when they aren’t going to be cooked. If we’re in a restaurant, I can find an appropriate substitute for a salad. None of these requirements changed my view of the value of a transplant. In fact, we learned to make good decisions about how we live our lives while protecting the lungs gifted to me by my selfless donor.
We also learned from others who had experienced this journey, both as transplant recipients and caregivers. A favorite was a column by Christie Patient here at Pulmonary Fibrosis News 20 days after I was transplanted. Christie wrote about making accommodations at a reception to allow “immune-compromised and elderly guests to serve themselves before the rest of the guests.” To avoid any confusion, this was a small gathering served by a catering team certified in food safety. It’s a practice we’ve adopted in our home.
Other resources are available as well. Two of my go-to resources to share with others on this journey are great tools for patients and caregivers to review. Both publications are available in English and Spanish:
An equitable adjustment
I don’t want to make this seem complicated. It’s more like changing a habit. You can make a series of adjustments that will become a part of your new lifestyle in your post-transplant world. Becoming familiar with these before transplant will help you.
I consider these changes an equitable adjustment for the gift of life. These adjustments allow me to 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.