My Crazy Experience Waiting and Preparing for Lung Transplant

In my previous column, I described the roller-coaster ride of my lung transplant evaluation. On Aug. 7, 2020, six years after my diagnosis of idiopathic pulmonary fibrosis (IPF), I was officially placed on the transplant list.

Waiting for the call

Waiting for the call was both breathtaking and intimidating. I was in the dreaded situation of not knowing whether I’d receive the notification in a few days or a few months. All indicators suggested it would come soon, but I was wary. My pulmonologist had taken me off my blood thinner, which put me at risk of having another life-threatening pulmonary embolism. I had already survived two and didn’t need a third.

Six days later, a case manager called at 8:45 p.m. to notify me that a donor’s lungs were available. By 9 p.m., our car was loaded, and my wife, Dana, and I left for the hospital.

The four-hour drive from Kansas City to St. Louis was surreal. However, once we exited the interstate and I saw the transplant hospital, it got real for me. I will never forget that moment.

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Preparing for surgery

Once at the hospital, I was admitted and taken to a room. It was now 1 a.m. on Aug. 14. At that point, I was tested for COVID-19. I’d previously had a test in June, and it wasn’t uncomfortable. But this particular COVID-19 test was different, with an L-shaped swab. The nurse stuck it far into my nostril and twisted. It was unbearable. Then, he said he had to do the other nostril. It was no fun at all.

As I waited, various health professionals came into the room to perform tests or provide information. Finally, around 3 a.m., a nurse told me that preop would begin at 5 a.m., with surgery at 7 a.m. Later, someone else said preop would be at 10 a.m. and the surgery at noon. I was confused.

I questioned the nurse about it, and they checked my information and reverified the 5 and 7 a.m. times. But a little later, I was back to 10 a.m. and noon. Now, I was losing my mind. Had they mixed up two people both getting lung transplants? Would they make a mistake and give me the wrong donor lungs?

I thought about the worst things that could happen. But I couldn’t control anything, so I held on to faith that everything would turn out all right.

Going into preop

The time delays continued. I finally went into the preop room around noon, and Dana had to leave because of COVID-19 protocols. I didn’t have my phone, so I was isolated.

The actual prep began with the surgeon coming in and talking with me. He had 24 years of experience doing lung transplants. He explained that after his parents both died from IPF, he made it his mission to help patients. He had an excellent bedside manner, which eased my nervousness.

He told me the surgery would start within an hour, around 1 p.m. He also mentioned the donor’s lungs were an hour away by helicopter.

Well, the surgery was delayed some more. Every hour or so, I was told it would begin soon. Because my donor was young, several of their organs were being donated, so it took some time for doctors to get to their lungs.

A successful surgery

Finally, around 4:30 p.m., I was taken into the operating room. All of the doctors, nurses, and techs started buzzing around prepping for surgery. They told me exactly what they were doing and played some music. They took a timeout to make sure everyone was ready and knew what to do. Finally, I was under anesthesia. My transplant was in the surgeon’s hands, and my life was in God’s.

The surgeon and nurse kept Dana and my daughter, Terri, informed, and reassured them I was doing fine. They called my family when the surgery began, when my right lung had been replaced two hours later, and when the surgery was completed around 10 p.m. The transplant was successful, and I was able to start my long recovery.

As I reflect on the last 15 months, I am astonished that everything worked out. Despite the craziness, I’d gladly do it all over again.

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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.