Except for the first 16 months, Halley Miglietta has been there to document virtually every milestone of her elder sister’s life. There was a time when she resented that role. Now, she said she would do anything to continue it.
She would even give up one of her kidneys for her sister, Chelsea Roman, if she could. Unfortunately, the siblings are not a compatible match.
Born two months premature, Roman’s kidney’s have never functioned at more than 25 percent efficiency. She has been on the transplant list at UC Davis Medical Center for almost five years. The sisters have family in the Seattle area, so a year ago, Roman signed up for the transplant list at the University of Washington.
Her chances of finding a donor kidney are lower because just 8.5 percent of the population share her B+ blood type. That percentage drops lower as doctors look at whether her body would accept the donor’s tissue. But her nephrologist at the medical center, Dr. Niti Madan, said if Roman can get a match, she’s an excellent candidate for a successful transplant.
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After five years of “if,” Roman’s kidney function has deteriorated. She has to go on dialysis, and Miglietta has begun to carry all the fears that their parents once bore, the greatest one being that the 32-year-old Roman will die all too young.
“I don’t know if I can handle one more loss of that gravity,” said Miglietta, who grew up in Grass Valley and now lives in midtown Sacramento. “I was 4 when my dad died. He died of lung cancer. I remember the day that he died. I remember being picked up from school early by a family member, and I remember coming home and our mom told us to give him a kiss goodbye. I remember the white van taking him away.”
Bob Miglietta died of lung cancer at age 43. His wife, Lisa Miglietta, died at 52. She went to the hospital with an excruciatingly painful stomachache, received a diagnosis of Stage 4 ovarian cancer and died two days later, said Miglietta, who was a senior at UC Davis at the time.
Now age 31, Miglietta has one person left who remembers all her milestones, who knows there comes a point when childhood resentments no longer matter and who has shared with her the difficult moments of sisterhood. She is hoping to get the word out about Roman’s plight, in hopes that potential living donors will step forward to be tested.
“As challenging as our relationship has been over the years, we have unconditionally really been there for each other because we are each other’s only (immediate) family member,” Miglietta said. “My worst fear is to watch her get really sick.”
Roman has always defied the bleak picture of a severely handicapped and sickly child that medical professionals painted for her parents, Miglietta said. Despite learning disabilities, she graduated from Nevada Union High School, has worked at several steady jobs, got married and owns a home in Sacramento’s Greenhaven area.
Mark Roman married Chelsea in February 2015. He said he wasn’t aware that she had any health issues until she mentioned it when they were dating.
“She was outgoing and seemed really bright,” he said. “She hides it really, really good. You would never know that she had an issue with her kidney function unless she told you.”
Having confronted health challenges her whole life, Roman isn’t one to bury her head in the sand when she encounters a new one. While seeing a hematologist, he suggested that she and Miglietta get tested for an inherited gene defect that increases women’s chances of getting ovarian and breast cancer.
Their mother had died of ovarian cancer, Roman said, but what really motivated the sisters to get the test was that one of their paternal grandfathers had died of breast cancer. Miglietta didn’t have the defect. Roman did.
“I decided right then and there that I was going to do the mastectomy,” Roman said. “It was a yearlong process.”
She had the mastectomy and cosmetic reconstruction surgery in 2012, and she wanted to have her ovaries removed, but doctors suggested she wait because her kidney function was so low. Throughout her life, Roman said, her mom and doctors have prepared her for the day she would need dialysis or a transplant.
With her kidney function at 18 percent to 20 percent, she went on the transplant list five years ago, she said. She started dialysis on Sept. 29.
“I just don’t have the energy to really do anything. I just lie on the couch and watch TV,” Roman said. “I’ve felt very nauseous and haven’t been able to eat much, which is a bummer because I love to cook, and I love to bake.”
Roman’s kidneys never developed the complex network of veins that adult kidneys have to filtrate and secrete toxins, Madan said, and her kidneys have slowly lost function. That can cause symptoms such as excessive sleepiness, poor appetite, itching and difficulty with memory or focus.
Miglietta joined Roman on her first trip to dialysis, and they both ended up in tears.
“They couldn’t find a vein. They poked her five times,” Miglietta said. “Her arm was all black and blue. When they were putting the needle in, she was just bawling. It was so sad. I started crying. It’s a good thing Mark was here.”
After a few weeks of the treatment, Roman said she felt better than she had in months. Although dialysis requires a significant lifestyle change, Madan said, some dialysis patients have lived 20 to 30 years on the procedure. The average life expectancy for people on dialysis has been five to 10 years.
It’s the average number that worries Miglietta, especially since five years already have passed with Roman waiting on a transplant list.
“We are hoping to get her story out in the community and spread the word so that she doesn’t have to stay on dialysis for a long time,” Miglietta said. “She can receive either an O- or a B-blood-type kidney.”