I truly don't know the actual identity of who I'm writing to, but as a mother, I address my letter to the mother of my hero--my son's organ donor. In my mind I think of your child as Superman, because they saved my son's life this fall by giving him their liver. But I also think of you and your family as Super, for in the midst of unimaginable pain watching your loved one die, you chose to help my son to live. Thank you, thank you, thank you for your unselfish desire to see something good arise through tragedy.
bilirubin--unexplained itching and insomnia. Since he hadn't been sick and is a young, healthy farm kid, we never suspected liver failure or an autoimmune disease! As the summer went on, the symptoms worsened. We visited the doctor many times, to be given new creams or steroids to control the itching. Nothing worked, until one day in July, I noticed his eyes were slightly yellow! That sent us to the KU Medical Center to the excellent team of Hepatologists. Even then, we thought he had slight liver damage due to an acne medicine he had been taking. Unfortunately, he continued to get worse and we found ourselves back in Kansas City with him undergoing tests we had never heard of. He was diagnosed with Primary Sclerosing Cholangitis (PSC) and although it usually takes years to ruin your bile ducts, he found himself on the transplant list within weeks.
It was quite the shock to see my once very healthy and active son virtually bedridden, barely able to eat or drink. He lost 35 pounds in 3 weeks and when he was unable to eat at all, the doctors admitted him to the hospital to await the transplant. To be frank, he nearly died due to liver failure. His bilirubin was off-the-charts high and he was weak and miserable. He lost muscle as well as body fat as his body, starved for protein, used his muscle for sustenance. I sat bedside, unable to help him or even comfort him as he grew weaker and quieter.
During the first week of classes at Kansas State University, his identical twin and siblings all went to school, hoping to get the phone call to bring them to Kansas City for a surgery that we all knew would save his life. But we also knew that call meant that someone else would be grieving over a lost loved one. So when the call finally came, at 7:18 pm on August 27, 2014, we couldn't rejoice, but instead prayed with my son for comfort and peace for you and your family.
He received your loved one's liver on the night of August 28--a day that will forever be burned in my memory--and yours, I'm sure. The first days after surgery were rough. He had been so very sick, that he had a lot of recovery ahead. But he gained strength every day and finally also gained weight. Today he is a freshman at K-State, following his intended path--if just a semester later. He is healthy, active and doing what he loves!
"Thank you" seems so insignificant--but it is all I can think to say. I give thanks for your child, for you and for your generosity. I pray that knowing that my son is alive and healthy because of your child's gift will give you comfort and peace. I am so grateful that you chose to allow your special person to become my hero. I cannot imagine the pain of losing your child, but I came very close. You are in my thoughts every day, and I want you to know that my boy is doing his best to live a good life to honor your child. I continue to pray for you and look forward to the day I can thank you in person and learn about the person you raised who became my hero--my Superman!
A mom who owes her son's life to you
The previous letter is the first I will send to the organ donor's family who donated a liver to my son. We are not allowed to know anything about this family for a time, as they need time to heal from their loss and my son needs time to recuperate. After a certain amount of time, if they are willing and we are willing, we may meet them in person. I look forward to that day, although it scares the hell out of me, as well. I refer to the donor as their "loved one" or their "child" not knowing the age or sex of the donor. All we know is their family made a very difficult decision at a time when they were hurting the most.
Please consider registering now to be an organ donor, so if the time should ever come, your family won't have to make that decision. Go to OrganDonor.gov and register today.