Louis M. DiGiacomo of Kenmore became an organ donor upon his passing in November 2014. Nicole Wilson, to whom he was engaged, shared this remembrance. 

On August 24, 2011, three days after proposing to me, Lou DiGiacomo, was diagnosed with ALS, or Lou Gehrig’s disease at the age of 29. It is a disease that affects nerve cells in the brain and spinal cord. Although it robbed him of walking, talking and eventually breathing, his organs and tissue remained healthy.

The topic of organ donation came up in a very unlikely place. In early 2012 Lou was no longer able to drive and his license had come up for renewal so we needed to get him an identification card. At this point he also lost function of his arms, so I was filling out the application for him. It came to the section regarding organ and tissue donation. It was a topic that had never come up before because frankly, it makes you think of death and when faced with a terminal illness at such a young age, death is not exactly what you want to talk or think about. With a lump in my throat I asked him if he would like to be an organ donor. Being the comedian he was, he laughed and said, “They can take whatever they want of mine, I can’t take them with me.” Knowing that he was comfortable talking about it, we then discussed it further right there while waiting at the DMV.

On November 18, 2014, three days after being admitted into the hospital, Lou had come to the end of his battle. The decision was made to take him off of life support. Everything is still such a blur but I remember when Unyts approached me and asked about his wishes of organ donation. I was numb, but hearing that question brought me right back to that day at the DMV and Lou’s comment. I immediately said yes and that he would like to donate whatever he could. A smile made its way through the tears.

Later that day we all met in a room at the hospital; I remember the Unyts staff being so empathetic and so caring, it made going through the motions even possible. I answered all of their questions, signed all the paperwork and went home to be with my daughter while they made all the arrangements and notified two of the recipients that would receive his kidneys.

Although this was one of the worst days of my life, because of Lou, it was going to be the best day to two people. And that was just the tip of the iceberg. So many people would benefit from his choice. I got the call around 10:30 that night that they were ready. I drove back to the hospital and was greeted by two of the Unyts support team, Darlene and Jodi. There was also a nurse from Unyts in the room with Lou the entire time. She texted Darlene step by step so we knew everything that was going on. In the dark lobby of Kenmore Mercy, we sat and waited. I paced the floor for what seemed like hours, even though it had only been about 30 minutes. Finally, Darlene received the message that Lou had passed peacefully at 12:42am. Just 7 minutes after they removed the breathing tube. The organs were then recovered and sent to ECMC where the two recipients were eagerly awaiting their arrival. Oddly enough, a sense of peace came over me.

Lou’s family left and my sister and I sat with Darlene and Jodi and we just talked. Being that they have gone through this many other times, they were able to offer so much comfort no one else could at that time. I remember telling them all about Lou and Zoey, laughter mixing with the tears. They just listened, and that was all I needed them to do. They would have stayed there all night with me.

A few weeks later I received a call from Darlene. One of the recipients of Lou’s kidneys wrote a letter and they wanted to know if I wished to receive it. Enthusiastically, I said yes. I anxiously awaited the letter. There were two letters from him and his family, along with a picture. As I read them the tears came flowing down, but I was able to smile, knowing that Lou gave this man the gift of life. A part of Lou is still here with us, and knowing that brought and still brings peace to my aching heart. When my daughter gets old enough to understand, I will show her these letters (along with all the letters her Daddy wrote to her) and she will know what an amazing father she has.

Lou was such a generous, caring, giving man in the flesh and even in death he still chose to give. He is my hero and he is Zoey’s hero and also the hero to all those he helped and will help. 

Do you know someone who has been touched by organ, eye or tissue donation?

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