Nobody is born wanting to be a transplant recipient, just as nobody is born wanting to become an organ donor. We are not born wanting to get sick, nor are we born wanting to die. Like a lot of people, before I got sick, I didn’t know anything about the world of organ transplantation. We have all experienced a simple truth about life – it can change in ways you can’t anticipate, and it can change faster than you can imagine. For me, it started back in 2002. I knew I was sick, but when you’re young, you sometimes feel invincible. You think there’s nothing wrong with you, or it’s not serious, or you’re just too busy to go the doctor now. I am lucky to have someone by my side who loved and cared for me enough to recognize that it was something serious.
In May 2002, I was diagnosed with a rare liver disease, Primary Sclerosing Cholangitis (PSC) just one month after discovering I was going to be a father for the first time. It is amazing how your life can go in two different directions at once. To get such great news, the impending arrival of your first child and pair it with the news that you likely will not live to see his sixth birthday was very hard to take. Of course, like anyone who gets bad news, I went through a range of emotions. Denial. Shock. Anger. Frustration. While I didn’t know anything about the disease, I strived to learn more. In the few months between my diagnosis and my son’s birthday, I discovered a lot about what it is like to be chronically ill and how to cope with that reality.
PSC is a slowly progressing disease for most people. When I was first diagnosed, I didn’t know that there was the potential for my life to be saved with organ donation. I was ready to accept whatever hand was dealt to me. It took years, and I got gradually worse and worse. I experienced symptoms like severe fatigue, itching, infections, swelling of my abdomen, and constant night sweats. I would experience fatigue so severe that all I could do some days was go to work, come home and sleep again until the next morning when it was time to go to work again. Not only did I feel really sick, but I looked it as well. My eyes and skin yellowed and darkened. I was so bad off that by the time of my transplant, my eyes were a dark greenish yellow. You could look into my eyes and know I didn’t have a lot of time. My doctors did all they could: many procedures and hospital visits that ultimately helped only a little bit, prolonging the inevitable. I didn't really realize exactly how sick I was until January 2008, when I received the gift of life from my donor. I was so sick that by the time I was placed on the waiting list and having a universal recipient blood type, I had a short wait to receive a life-saving transplant. It was literally a miracle that I was saved within the last few weeks of my life thanks to the love and generosity of my organ donor.
To say it changed my life is an understatement. Not only was I saved from the brink of death, but I immediately started feeling better. I was so used to being sick, and I had been sick for so long that I had forgotten what it felt like to be healthy. My appearance changed immediately. I gained some weight again, and my eyes and skin normalized. I now had the energy to be a father, which is something I thought impossible when I was diagnosed. But, one month after his 5th birthday, it all changed. I could now be a father to my son again.
Here I am now: five years post-transplant, five years since receiving the gift of a new life. I am still healthy and doing well. Even better than just simply doing well, we were able to have another son. He was born in April 2013. When I look into his eyes and see the love that he has, I see the love that my donor had in making the decision to give life to others. It is very clear to me: without my donor, my son would not be here. It is equally clear that not only does a part of my donor live on in me, but a new life has been created from that love and gift.
As I said before, nobody is born wanting to be an organ donor or a transplant recipient. But, we are all born with the capacity to love one another and to be loved in return. I am fortunate enough to be here today thanks to someone’s capacity to love and the decision to turn that love into the physical act of being an organ donor. This was an intentional decision that someone made to save a life, to give freely of oneself with nothing in return, which is the ultimate act of love. It is a simple fact, but it cannot be said enough – if it were not for my organ donor, I would not be here today. I can also say that another life, one that came into the world after my transplant is here, my second son, thanks to my donor. It is for that reason that I can never express enough love and appreciation for this person, but I try, every day, to do just that.