Waiting for 'a life restored'

Marcus Simon is ready to get his life back. But first, he has to find a kidney donor.

“Everything in my life revolves around my dialysis,” said the Hoover resident, who receives dialysis treatments three times a week while he waits on the transplant list.

In October 2014, Simon developed what he thought was pneumonia. His ear, nose and throat specialist sent Simon to the hospital for treatment, but he felt so weak that he had to be wheeled out of the ENT office and transported by ambulance. His kidneys and lungs had begun to fail, and it took a combination of dialysis, a blood transfusion, steroids and chemotherapy to keep Simon alive.

“I probably should be dead; my blood counts were so low,” Simon said.

He was diagnosed with granulomatosis with polyangiitis, also called Wegener’s granulomatosis. It’s an inflammatatory autoimmune disorder that restricts blood flow to organs. The first symptoms often start in the respiratory system, and the disorder can appear slowly over months or, as in Simon’s case, in a matter of two weeks.

With treatment, Simon’s lungs began to heal. His kidneys did not. After more than a year of dialysis treatment, Simon was added to the kidney transplant waiting list in April 2016.

“Mentally and emotionally, it was like, ‘OK, my life is totally changed,’” Simon said. “I didn’t even understand the scale of a transplant.”

Now that he’s on dialysis three days a week, Simon is limited to working from home, and he can’t do much traveling. It can be hard on his wife, Ericka, and stepson, Gabriel, since he no longer has the same freedom and activity level, Simon said. He also knows to expect that he’ll feel worse the day after a dialysis treatment, and just about the time he’s starting to feel better, it’s time for another treatment.

“I feel like I’ve missed out on so much stuff. I haven’t been able to make it home to see people, for some of my nieces and nephews’ birthday parties. I hate that because it always used to be nothing for me to go home,” Simon said.

But in other ways, he feels fortunate that his situation isn’t worse. Simon said he has met others undergoing dialysis in far worse health, so he doesn’t like to complain when he is still able to work and spend time with family who live nearby.

“I’m in the best possible health that I can be in under the circumstances,” Simon said. “I just try to stay super, super disciplined.” 

At first, Simon kept the details of his diagnosis and treatment to himself, and many of his family members didn’t know he was going to be added to the transplant list until after it was done. He had planned to keep it that way, until his birthday last December, when he was reminded of all the things in life he wants to get back to doing.

“I really want my life back. So I’ve got to step out of my comfort zone and try to see if I can find a living donor, because the wait time for my blood type is three to five years,” Simon said. “I can’t sit here and say that I really want to be better if I’m not going to exhaust every resource and try everything I can possibly try to see if I can find a donor.”

He’s begun sharing information with friends and co-workers, as well as on social media and his blog, “A Life Restored.” Simon is hopeful he can find a donor on his own much faster than the wait on the transplant list. Once he has a new kidney, Simon said there are many things he’s looking forward to: traveling to see family, advancing his career and perhaps eventually having a child. 

But he especially can’t wait to have a life that doesn’t revolve around dialysis.

“I want my body to be in the best possible shape to handle everything that comes. So I want my health to be secondary to everything that’s going on and not primary,” Simon said.

If anyone wants to be a donor, please go to the website here to fill-out the Living Donor Intake Form for Vanderbilt. Or call the Living Donor Coordinator (615-936-0695 or 866-748-1491). Marcus' blood type is A+ and matches with A+, A-, O+, and O-.

Additionally, if someone is not a match, they can still donate through the paired-exchange program. Marcus' blog can be found at alrsimon.blogspot.com.

His GoFundMe page if anyone wants to donate to help cover non-medical transplant costs is here.