My Lung Transplant Evaluation Was a Roller Coaster Ride of Emotions
In May 2017, I began the roller coaster ride that was my lung transplant evaluation. I call it this because it had the usual climbs of positive developments, and the fast and dramatic drops. But it also had terrifying twists and turns, and unexpected events, which left me frustrated throughout the process.
Determining the need for evaluation
I started to have a chronic wet cough, which is unusual because a dry cough is usually associated with idiopathic pulmonary fibrosis (IPF). The cough was new, and it was so loud and demanding I thought I was dying.
Eventually, doctors determined that I was in atrial fibrillation, which is an irregular heart rhythm, and fluid had formed in my lungs. As a result, my lung capacity dropped from 63% to 51% in July of that year. A 10% drop in lung capacity is considered significant and indicates a need for a transplant evaluation.
Besides my lungs, I was concerned about my kidneys. Before my evaluation, I saw my nephrologist about possible kidney disease. He indicated that my kidneys shouldn’t stop me from having a lung transplant.
In August 2017, I started my transplant assessment. I completed the initial tests, except cardiac catheterization, before my next appointment, when a transplant pulmonologist would tell me if the evaluation would continue or if I would be rejected.
My clinic visit was the first 180-degree turn on my roller coaster ride. The pulmonologist didn’t discuss my tests. All he wanted to talk about were my possible kidney issues. He said I couldn’t complete the cardiac catheterization because of the high risk of being placed on kidney dialysis.
However, the pulmonologist couldn’t reject me for a transplant, because I was in the middle of a 24-hour urine creatinine clearance test, which would indicate the stage of my kidney disease and my ability to have a transplant.
When the pulmonologist ignored questions from my wife and my daughter, we were perplexed, angry, depressed, and emotional about the unexpected outcome of the appointment. We headed home and waited for the test results. Two days later, I received my creatinine clearance results, which were normal. This was great news, and I would return in a year for further evaluation. Over the next two years, I had checkups and continued to be a candidate for a transplant.
By May 2020, my lung capacity had decreased by 10% again. So, I had my annual visit moved up to the end of May. At this appointment, a transplant pulmonologist recommended that I complete the final tests for transplant if I needed to be listed in the future.
On June 30, I saw a transplant pulmonologist and completed my cardiac catheterization. I believed that the pulmonologist would tell me to come back in three months. But the roller coaster had different plans, sending me barreling downward and into a frightening loop.
During the visit, the pulmonologist said it was time for me to be listed for new lungs. Although it was the result I had wanted, it still took me by surprise. My case manager had all the consent forms for the surgery and the three bronchoscopies. She said I could sign them now or wait and fax them later. After getting over the shock, I quickly decided to have the transplant and signed the consent forms. My post-transplant IPF progression analysis supported being placed on the list immediately.
The next day, I passed my cardiac catheterization procedure and believed I had completed all of the necessary tests. But, once again, the roller coaster took another twist. On July 7, I found out I needed more tests. So, I had to wait another three weeks.
On Aug. 3, I had a consultation with a transplant surgeon. It was incredibly detailed regarding the risks of transplant, which was was intimidating. I was excited that my testing was complete. But late in the day, another test was scheduled for Tuesday. When would the required testing end and the roller coaster ride stop?
The ride continued at my clinical appointment, where I expected to discuss my lung allocation score (LAS) and be listed. But the roller coaster headed into a double loop when the pulmonologist talked about why I shouldn’t have the transplant. It seemed like the pulmonologist was planning my funeral.
I maintained my original decision. Finally, I received my estimated LAS, which was 45.6, which placed me in the top 15% of the list. I was listed on Aug. 7.
A friend and I went through the process at the same time and had similar experiences. Going through the transplant process, we don’t know what will happen, so expect the unexpected. However, keep up a positive attitude, because there is a light at the end of the ride.
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.