Woman with rare autoimmune syndrome spreads message of hope after second kidney transplant

Woman with rare autoimmune syndrome spreads message of hope after second kidney transplant

WILMINGTON, NC (WECT) - A woman with a rare autoimmune syndrome recently received the gift of a kidney transplant, and now she hopes her story of survival will help others struggling with medical conditions and encourage people to become organ donors.

Amy Moore, born and raised in Southeastern North Carolina, was diagnosed with Goodpasture syndrome at the age of 16, completely changing the course of her young life.

“It just came on all of the sudden,” said Moore. “One night, I wasn't feeling well. I had nausea and vomiting. I looked at my mom and said, ‘Something's wrong,’ because I couldn't breathe."

She was rushed to the hospital, where doctors confirmed her diagnosis of Goodpasture and she was flown to UNC Hospitals.

"For all I knew, I was perfectly healthy up until that point,” said Moore.

In Goodpasture syndrome, the kidney’s blood vessels are inflamed, the lungs bleed, and antibodies attack the person’s own lung and kidney cells. It’s treated with medications that suppress the immune system and can be fatal if not addressed.

The cause of Goodpasture syndrome is not fully understood, but medical experts believe it might be related to exposure to hydrocarbon fumes, metallic dust, or drugs like cocaine. Genetics are also suspected to play a role.

Moore’s kidneys and lungs were under attack by her own body. Luckily, her lungs recovered, but her kidneys did not survive.

"I was in denial. I didn't realize it was a lifelong deal I would have to deal with,” said Moore.

From the age of 16 to 19, Moore had to undergo dialysis, a treatment with a special machine where a person’s blood is cleaned – performing the functions of the kidneys.

Then on Moore’s 19th birthday, she received the unexpected gift of a transplant. “That was my first transplant,” said Moore, and it wouldn’t be her last.

Over time, medications that Moore had to take to prevent organ rejection damaged her new kidneys. Combined with chronic rejection by the body’s immune cells, Moore ultimately lost her first kidney transplant after 12 years.

Moore then began her second, long-term experience with dialysis. At first, she went into clinics for the treatment about four times a week for roughly three to four hours. Later, she decided to try dialysis in her home.

"I was really afraid to do (dialysis at home),” said Moore. “Because you have to stick the needles in yourself. And I was like, ‘I can't do it.’ I just had my mind set that it wasn't happening."

But she decided to eventually try it with the help of her partner. Soon, she transitioned to sticking the needle in herself.

"I wouldn't have it any other way now,” said Moore. “I prefer to stick myself. I know my body better. I know where I went and I stuck last time, and I know not to go there again."

Moore then began the time-consuming ritual of dialysis at home combined with a regular dosage of medications. And she waited on the organ donor list, again, for new kidneys.

In her at-home dialysis room, there is a Bob Marley quote on the wall: "You never know how strong you are, until being strong is your only choice."

After eight years on the waiting list, Moore got a phone call about kidneys from a donor in California that would change her life again.

"It came out of nowhere, and It was just surreal,” said Moore. “I didn't want to believe, because it was my fourth call that I've gotten. Any time I get a call I try not to get my hopes up too high. But I kind of automatically felt good about this one, it felt right."

On September 29, Moore received her second kidney transplant. More than a month has passed since the operation, and Moore has had a smooth recovery so far.

"I've got total freedom now,” said Moore. “I've got so much time on my hands, I really don't know what to do with myself now, which, I can't do a whole lot right now, because any time I go out of the house into public, I have wear a mask over my face, in case anybody is sick."

Moore is grateful for her second kidney transplant, and hopes that others will not only register as organ donors, but also let their family know of their wishes.

"It's not just about checking the box when you get your driver license,” said Moore. “You also have to make your family aware. Because even if that little heart is on your driver license, and something, God forbid, were happen, if you family doesn't agree to it, then they won't do it."

Currently, Moore continues to recover from her operation, and must take daily medications and travel to UNC Hospitals once or twice a week for treatment. Even though she does not require dialysis, Moore has scars on her arms from operations relating to the treatment.

"I'm doing amazing. It's gone so smooth, it's almost scary. Too good to be true,” said Moore.

Moore looks forward to working again once she is healthy enough to leave her house without a mask. She hopes to form a support group for other people with kidney diseases in the Wilmington area.

"I might go back and try to do dialysis, get a job as a tech,” said Moore.

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