My Post-transplant Life Is Well Worth the Cost
Almost 30 hours after my bilateral lung transplant, it was time for me to be extubated and take my first solo breath with my new lungs. My wife, Susan, was at my bedside, along with several nurses.
In a video of that day last July, you can hear Susan ask me if I’m ready to have the tube removed. I shook my head no.
But once the nurses removed the tube, an almost immediate calm came over me. I could breathe.
Making the trade
I wake up every day and say a prayer for my donor and their family. My quality of life has dramatically improved thanks to their gift. A transplant was the right choice for me.
But having a bilateral lung transplant due to idiopathic pulmonary fibrosis (IPF) meant trading one medical issue for another. My IPF is unlikely to reoccur, while my transplanted lungs will require medical management for the rest of my life.
The ability to breathe freely again requires commitment and discipline regarding medical care and possible modifications to diet, behavior, and lifestyle.
Today, my immune system is suppressed as part of the plan to prevent rejection. Because of that, I must be more cautious around crowds, indoor gatherings, and people who may be ill. I am comfortable wearing a surgical face mask and continue that practice to protect my beautiful new lungs.
Medications are adjusted frequently, especially in the first year post-transplant. I had 66 medication adjustments in the first 11 months. Changes are made based on bloodwork (often done weekly), lab results, and clinic visits. Susan and I work together to dispense my medications on a weekly basis.
During the pandemic, I’ve received four doses of the Moderna COVID-19 vaccine. I will receive a fifth dose in late August. I was also fortunate to receive an Evusheld (tixagevimab and cilgavimab) infusion for pre-exposure prophylaxis of COVID-19.
Many post-transplant patients adjust their diets in advance of their transplant. My transplant took place at the Inova Fairfax Hospital in Falls Church, Virginia, one of the Pulmonary Fibrosis Foundation Care Center Network (CCN) sites. A CCN site takes a multidisciplinary approach to care, which includes a registered dietitian who offers education and counseling to patients and their families.
Water in our home is well water, which is not acceptable post-transplant except for bathing. We arranged for bottled water to be delivered to our home. For dishwashing, we can use a properly functioning dishwasher that heats the water.
Some of the dietary changes I had to adopt required some additional prep work. The best example is that raw vegetables are not allowed unless properly cleaned with a mixture of cider vinegar and water. Cleaning a single carrot is not difficult or time-consuming, but cleaning individual lettuce or spinach leaves can be.
I also can’t consume certain foods, such as pomegranate or grapefruit, because they interact with my anti-rejection medications. Buffet lines in restaurants are not advised, given the number of people who may have passed through the line previously. A green salad with dinner in a restaurant is not recommended because you don’t know how well the vegetables were cleaned.
Finally, alcohol does not mix well with many of my daily medications. I enjoyed wine before my transplant, but I had my last glass on July 8, 2021, the night before I received a call with a lung offer.
A small price to pay
Taking safety precautions, being diligent about taking my medications, and staying vigilant about my diet are small prices to pay for the improvement in my quality of life. Not only can I breathe freely, but all aspects of my life have improved.
I also want to continue to treasure and protect the gift my donor and their family have bestowed upon me. I will honor them by continuing 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.