Aaron Miller, 30, who is a 2007 Norwalk High School graduate, suffers from Primary Sclerosing Cholangitis — a rare autoimmune disease that attacks the body and destroys the liver. And since being diagnosed in 2011, one theme is abundantly clear: without a liver transplant, the father of a nine-year-old son will almost certainly die.
“We’re very private people,” Aaron’s mother, Donna Miller, said. “But this is too important.”
And in the living room of the Miller family’s Main Street home, with Aaron on the couch and Donna sitting nearby on an ottoman, the two shared their journey of heartbreak, fear, and health problems.
Living in pain
“I got put on a transplant list in 2012, everything was finalized at University Hospital in Cleveland,” Aaron said. “And they immediately said ‘you’re gonna need a transplant ... That’s the only way you can get that fixed,’ he said with a slight laugh.
“The hospital said now that I was on the list, all we had to do was wait.” But in order to be considered for a transplant, the process uses criteria called a Model for End-Stage Liver Disease, or MELD score. The score ranges from six to 40. “Six — you’re fine; you’re basically at the start of deterioration,” Aaron said. “Between 30-40 is the danger zone.” Donna explained exception points for the MELD score were given to bring a sick person up to the point to receive an organ from a deceased donor.
Aaron was at 32. “Then they changed the rules and took away the exception points,” Donna said. “And now he’s just sitting here getting sicker and sicker. And we knew at that point he needed to get a liver soon.”
So they decided to transfer to the world-renowned Cleveland Clinic, which has marked success with organ transplants from living donors. That meant anyone with a compatible blood type and liver could donate a lobe of their liver.
Unfortunately, the family soon faced another setback, when they discovered that other than a deceased (maternal) grandmother, no one in Aaron’s family was a match. Aaron’s blood type is O+, so he can only receive a transplant from either another 0+ or 0- blood type.
Donna and Stephanie Fleming — the mother of Aaron’s son Lochlan — then took to social media to get the word out. Donna started ‘A Living Donor for Aaron’ page on Facebook, while Stephanie started a t-shirt campaign to raise money to pay for his medications.
To fight off the condition’s effect on his immune system, Aaron takes a series of pills for gastrointestinal bleeding, crushed vertebrae in his back, deteriorating bones, osteoporosis and perhaps most dangerously, being prone to infection. In the past year, Aaron was hospitalized due to septic shock, pneumonia and intestinal bleeding. Being intubated three times for more than a month is enough, he said.
“It’s worn on me mentally,” he said, his voice breaking. “I had to spend the majority of this year learning how to walk again because of how long I was intubated. I couldn’t move; I had to relearn how to talk almost. I had to go through a really rigorous process of learning to eat again because my body wouldn’t tolerate food because I was on a feeding tube in the hospital for so long.”
“I used to be strong as an ox, and now I can’t even lift anything. I have to walk up the stairs at a slow pace and it just hurts and I’m coughing all the time, and when I walk I have this hunch in my back. ... I feel like I’m 70, 80-years-old.”
Despite being couch-bound, Aaron took up Legos to rebuild his motor skills. One of his greatest structures, or at least my favorite, is a 7,500-plus piece Millennium Falcon from “Star Wars,” some of which he built with his son.
“Let’s put it this way: with having a compromised immune system I really can’t do much outside of being home,” he said.
“The only way to stop this is to get a liver for him,” Donna said with tears “So we’re just hoping someone will come forward. A few people have, but they weren’t a match. And I know it’s a lot to ask of people, but it’s his life, so I’m willing to ask. It’s scary to think of him not making it. I see him living a full life and thats why I know that if we search for a living donor he’ll have a full life and he’ll get to see his son grow up.”
Aaron is worried about his family, too.
“I don’t think I’ll ever be able to fully understand what they’re going through,” Aaron said about his parents going through the journey alongside him.
“As a parent myself, my son has been very healthy. The only way I can relate to being upset at seeing a sick child is, I remember a couple years ago he had to go to the Emergency Room because he kept vomiting. His mom and I didn’t know what was wrong with him and it turned out to be nothing serious, but looking at him lying down on the little bed they had him on. And him being upset because they had to put I.V.s in him and knowing you’d do anything you can to make sure they feel better,” he said, with his voice breaking. “But, there’s really nothing can do other than hope for the best.”
So what does Miller want the community to know?
“I want to have it understood,” he said finally, “I’ve always been a very private person my entire life. I’ve never asked anything big of anybody; I’ve always been one to try to do things on my own the best that I can, and ... I’ve endured this for so long and it’s gotten to the point where, I do realize I do need someone’s help, and I know it’s a lot to ask, but ... I just want my normal life back. Almost 10 years of this and I’m just so tired, something has to be done.”
“All I ask is that if there’s somebody out there who’s willing to help I’d be forever grateful and in their debt.”
Want to help?
Visit Cleveland Clinic’s online Living Donor Liver Transplantation
Visit A Living Donor For Aaron on Facebook
For an online donor form, call the Cleveland Clinic at 216-444-1976, select option No. 1 and No. 2.
LIVER TRANSPLANT FACTS
• Approximately 20 percent of patients waiting for a liver transplant die or become too sick before they can get one.
• The liver is the only organ in the body that can grow back if a part of it is removed.
• (For adults) 60-70 percent of the right lobe of liver; 30-40 percent of the left lobe.
Source: Cleveland Clinic