18-year-old twins needed liver transplants to survive rare condition. Only one lived long enough to get his.
By Cecilio Leacock IBexclusive News Wednesday, March 21, 2018.
(IBEXNews) - Identical 18-year-old twin brothers had both been diagnosed last year with Stage 4 cirrhosis of the liver— severe scarring commonly associated with alcoholism. In this case, it was the result of a gene mutation, and both brothers needed new livers to survive it.
Devin received a new liver earlier this year.
But while waiting to be put on the organ transplant list, Nick developed an aggressive form of cancer.
“I asked him, I said, ‘Is there anything specifically you want me to do while I’m coming up and going through life itself?’ And he said just be me, just do what I want to do. And I said, ‘I got that,’ ” Devin recently told ABC News.
Nick died earlier this week, his mother said.
“My beautiful son Nick departed this world last night a little after 8:30pm,” the twins’ mother, Margi Coats, wrote Tuesday on a Facebook page chronicling their fight. “My life line has been severed as Nick went on to be with the Lord.”
She added that Devin now “feels a deep loss.”
“He will wake this morning and feel empty,” she wrote. “He will look for Nick and the realization will hit him hard. Although Devin remains strong knowing Nick is in a better place and at peace, he will feel lonely. Please pray for God’s blanket of comfort and peace to wrap around Devin’s shoulders. Today and everyday will be hard for him.”
Coats was not immediately available Wednesday for an interview with The Washington Post.
It all started earlier last year when Nick called his mother from school. He told her that his hamstrings burned so badly he could hardly sit down at his desk. With the boys quickly approaching 6 feet tall, his mother assumed it was simply growing pains, she recounted on a GoFundMe page for the twins.
When the teenager continued to complain, his mother took him to the emergency room, she said.
A blood test revealed Nick’s platelets were significantly low and, since he was an identical twin, doctors recommended checking out Devin, too. In March, both boys were diagnosed with cirrhosis, their mother said.
Cirrhosis occurs when damage has been done to the liver and, in attempting to heal itself, it forms scar tissue. But as scar tissue builds up, it makes it difficult for the organ to function, according to the Mayo Clinic.
When caught early, cirrhosis can sometimes be stopped. But in the Coatses' case, they needed new livers.
Doctors planned to put both boys on the transplant list — but first, their conditions had to worsen so they could qualify.
It was while waiting that Nick developed lesions on his liver.
In August, his mother said, he was diagnosed with angiosarcoma, a rare form of cancer that attacks the lining of the blood vessels.
“I felt like my whole world had changed in that moment,” she wrote on the GoFundMe page. “So many questions were rushing through my mind and I didn’t know the severity of what he had but all I knew is that my son, a healthy young twin boy, is now battling cancer on top of cirrhosis of the liver.
“What do I do now? How do I accept this? Why God, why? All of these questions and so many others flew through my mind. From feeling angry. To bitterness. Why him? I cried and cried and it was all I could do to not collapse to my knees completely overtaken with emotion. But I knew I had to hold strong for my son, even as hard as that was.”
She wrote that she tried to show her son it wasn’t the end, “but deep in my heart, I knew it was bad.”
Now, the grieving mother is speaking out about donation — and the lack of available organs for those in need.
Less than a day before Nick died, Coats wrote about the shortage problem in a Facebook post, saying, “we have WAY too many people in this country for there to even BE a waiting list.”
“If my son didn’t have to wait due to the lack of liver donors nationwide, he would’ve been transplanted before time allowed the liver cancer to develop as well,” she wrote about Nick.
“Don’t let this be your son, daughter, mother, father, sister, brother, cousin or even friend because you know something? As I type this, I’m laying in my son’s bed watching him slowly slip away with his hand in mine, with my heart pounding out my chest, because I promised I would never leave his side. No one should have to watch their loved [ones] pass because of lack of organs. There are way too many people in this country for this to happen!”