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Cynthia Nelson Weiss (@cynthia nelson) published a blog post · July 11th, 2010

Waiting... for a second chance at life

This post was written by Trevor Bougill, an intern at Mayo Clinic's campus in Florida.

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Over the past few weeks, the media has been full of reports about renowned musician Gregg Allman of the Southern Rock group, The Allman Brothers Band, who received a life-saving liver transplant at Mayo Clinic. While I’m not a musician – or for that fact, musically inclined in any capacity – I now share something in common with the rock and roll legend: A second chance at life thanks to an organ donation.

It was March 21, 2009 that I learned I had bile duct cancer, or cholangiocarcinoma, a disease that would ultimately necessitate my being placed on the waiting list for a new liver.

As I read about Allman’s surgery, I thought back to my experiences at Mayo Clinic and the uncertainty surrounding organ transplantation. I know first-hand how excruciatingly difficult it is to give up control and just wait and hope for the call to come that an organ is available. It becomes all you think about.

I was placed on the waiting list in June 2009 and every week – week after week – I tried to ignore the emotional angst and remind myself of the solemn assurance that it would happen when it was supposed to.

It was a Tuesday. December first to be specific, early in the afternoon when the phone rang. It was a dreary day, characteristic of the past nine months I had spent cooped up at the Inn at Mayo, waiting. Torrents of despair washed over my mind. I answered the phone with a reticent, frustrated tone.

“Trevor?” Her voice was measured and fastidious. “We think we have a liver for you...”

How hearing those eight words can change your life. The doubt, uncertainty, and despair eradicated. My life was no longer put on hold anymore. My world that I had shutoff from reality reopened.

I had already packed my bag of necessities in advance: New toothbrush, pajamas, blood pressure cuff, a couple books. I was ready to go.

My mother and I arrived at the ER at 4:30 pm. A tech strapped a medical bracelet imprinted with “liver transplant” on my wrist. We were directed to the third floor of Mayo’s hospital, the transplant unit. The nurses escorted us to room 319, my temporary residence for the next week.

I remember looking in the mirror of the bathroom and seeing the whites of my eyes. There was no yellow tint, no evidence of the jaundice that had plagued me for months earlier. Upon first glance, you could not tell I was sick. Although my cheekbones were a little pronounced, I had tried to maintain a healthy weight. I was fortunate enough to still have a full head of hair – the chemo I’d undergone had not ridden me of that.

I lay on the bed in a slightly upright position. A nurse entered the room and gave us a “soft time” of 11 p.m, an estimate of when the surgery would take place. Seven hours, I thought. But then, at that point, what was another seven hours?

The day wore on and finally, she came back. Midnight. It was definite. The surgery was going to happen.

While waiting for the surgery, I was accompanied by Joey and Maggie Shook. Maggie had received a liver transplant two months earlier and Joey was her consummate caregiver. Another liver transplant recipient, Andy Marks joined us. Throughout the arduous wait, Andy had proven to be a constant source of inspiration. He had suffered from the same cancer I had. Both Maggie and Andy were proof that life would continue after this ordeal.

At 10 pm, a short, dark-haired man with thin spectacles appeared. He was dressed in a long white coat that was almost too big for him. I recognized him immediately; it was Dr. Justin Nguyen, the transplant surgeon who would be performing my surgery. His voice was soft and deliberate; slow. He chose his words carefully. He talked about the procedure and asked us if we had any questions. The sagacious man reassured us that everything was going to be fine.

I heard a helicopter hovering above. It was the same noise that I had heard above my hotel room at night for the past eight months. An organ was arriving. Someone’s life was about the change.

I thought I had prepared myself as best as I could for the moment. Anxiety filled my insides. The kind of anxiety one experiences before a big test, except a million times amplified. Life and death anxiety.

The moment had come. Eight months of waiting had culminated to this moment. As I got into a wheelchair, ready to be wheeled to surgery, it hit. I had always tried to distance myself from what the surgery would be like. I tried to remain stoic. But I broke down. Tears of joy (and fear) filled my face. My conscious shuttered. Andy, who had continued to wait with me, placed a hand of reassurance on my shoulder. My mom, by my side, gripped my hand. I gave it a strong squeeze. It was time.

People were everywhere in the operating room. Nurses, anesthesiologists, assistants, doctors. Enough to start a baseball team. I remember the cold. I was shivering. A nurse placed a blanket over my legs while a clear plastic mask covered my nose and mouth. The anesthesiologist told me to relax, to let sleep come. My mind was blank. The wait was over. I was here, on the table, ready.

I spent eleven days in the hospital recovering from the procedure. I dealt with some complications, a stent had to be inserted in my celiac artery due to insufficient blood flow. There is not much I remember about my stay.

When someone has a transplant, they experience a re-birth. Gregg is a week old and I am close to seven months. We are here because of our donors and their families. They saved our lives. How lucky we are. We are forever grateful for their selfless gift.

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Allman Brothers bile duct cancer cholangiocarcinoma Gregg Allman liver transplant

 

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