There’s a 50 pound bag of cement sitting on my chest. No, wait. There are two. They are so heavy that I can barely breathe. Crushing. Suffocating. But, the strange thing is that even though I feel like I have weight on me, there’s nothing there. It’s emotional weight.
Yesterday I got news of a liver transplant friend who passed away. You would think I’d get use to it, right? Eighteen people die every day waiting for transplants. That’s 6500 people a year. It’s just a part of the world I live in now, right? But I can’t get used to it. I can’t.
Maybe it’s because I saw the pain in my wife’s eyes while she watched me dying. Maybe the memory of my mom’s tears and the look on her face when she looked at me will never fade. I hated seeing them hurting so … because of me. I bet it is the same regardless of the fight: liver disease, cancer, ALS, COPD.
The first sack of cement hit me with yesterday’s news that Jessi Hillborn died. Jessi was an young wife and mother with an infectious positive outlook and welcoming smile. Jessi was a fighter who already got her transplant just a handful of weeks ago. She did so well she was released from the hospital just 4 days later! She started asking our support group about the normal aches and pains following surgery but as she did she always laughed and joked. But then fevers started coming. Fevers are not good for transplant recipients. We told her to check with her team.
Jessi posted that she was admitted to the hospital with GVHD (Graft vs Host Disease). GVHD is when the cells of the transplanted liver attack the host. Even though Jessi’s posts were positive I knew she was in grave danger. Upwards of 75% never leave the hospital with a diagnosis of GVHD. I prayed and hoped as best I could. If anyone could beat it it would have to be this energetic, warrior mom. I was wrong. The news of her death and the mourning of her family now sits on my chest.
And then, this afternoon while I was watching my Red Sox battle the Rangers, I took out my phone to glance at Facebook and read a post that a young husband should never have to write.
To all my friends and family. This morning, Rachelle had a major bleed out. The cause unknown. Her heart stopped for a bit, but they got her working again. However, given her volatile state, they would never determine that she would be strong enough to survive a transplant. As her husband, this duty came to be the hardest choice I have ever had to make in my life. So, on May 5th, I had to let her suffering end and let her go. To all of you who were blessed to know her in life, thank you for sharing our moments of joy and sadness. But it is over now. Rachelle Passmore, my wife, is dead. – Alan
I couldn’t breathe. The second bag of emotional cement landed on top of Jessi’s. Rachelle died waiting for a liver. Waiting. She died while hundreds of life-saving, usable organs were tragically buried in the ground today. Hundreds yesterday. Hundreds the day before.
We’re not talking about a terminal situation here. Rachelle did not have to die. If she had received a liver she might be living and enjoying life soon just like I do today. I think wasting usable organs is like having cancer and watching the cure washed down the drain. Could you handle that if a loved one was dying of cancer while their chance at life was just thrown away over and over again?
These two bags of emotional cement will sit here for awhile even though I never met Rachelle or Jessi. My disease connects me to them and to their families. Either of their stories could have been my story. Thankfully Jessi’s story is no longer common in the transplant world. Sadly, Rachelle’s is.
What can I say to get you to register as an organ donor? What can I do to persuade you to join our cause of registering so many donors that we will end the wait here in the United States?
Every person I convince to take 5-10 minutes to register takes weight of my chest.
Please? Now? http://www.donatelife.net