Violinist and music teacher, Ginette Reitz of Los Osos, has seen her long battle with disease go through its ups and downs, like a fine piece of music. But she’s reached the point where only a transplant will stave off the Coda on her life.
“For many years,” Ginette says, while sitting in the living room of her home in Baywood Park, “it was little things I could ignore. But over the past 5 years, it’s been a roller coaster ride. Now, the highs are less and the lows are lower. I don’t seem to be bouncing back like I used to.”
Ginette, 57, has been in Los Osos since about 1987 and is a professional violinist and teacher of the violin and viola. “I’ve been doing that since I started college, in 1978 or so.”
She was born in Switzerland, coming from a long line of professional musicians. As the youngest of four kids, the question, “Was not whether you wanted to play, but what instrument?” At 4, she started two years of piano lessons and at age 6, took up the violin, because none of her siblings, “was playing the violin.”
She grew up in Laguna Hills playing in school ensembles, but “I left as soon as I could,” she laughs. Her childhood coincided with a lot of growth in that area of Southern California. “I had a horse and I loved having open places to ride. But it got to the point where it took 45 minutes to find a patch of dirt to ride on.”
She discovered the Central Coast through a friendship with Michael Nowak, who was the musical director and conductor of the San Luis Symphony. “It was his suggestion to move down from Monterey, where I had been teaching in public schools,” she recalls. When she arrived, she began to help out with the Youth Symphony, leading an after-school strings program through the Symphony’s efforts in music education. She built up a private practice through her work with the Youth Symphony, she explains. She has taught music to literally thousands of local kids over the past 25 years or so.
She played for years with various performance groups including the Pacific Repertory Opera, and “various other groups that have come and gone.” She’s a member or past member of Orchestra Novo, the SLO Master Chorale Orchestra and the SLO Symphony.
Now, though, the disease that has destroyed her liver has become too much to continue to play. “I don’t have the energy to do my part,” she says. “I get cramps in my hands and my energy level just doesn’t let me do it.”
Her disease is called “Primary Billiary Cholangitis” or PBC, which leads to what used to simply be called, “cirrhosis,” she explains. But cirrhosis became associated with alcoholism and stigmatized its sufferers, when there are actually several causes for what is essentially the clogging of bile ducts and eventual dying off of the liver. It causes a person to fill with “biofluids,” which are poison to the body.
“If the ducts get blocked because of disease or injury, the bile backs up into the liver and can cause cirrhosis,” reads an excerpt from webmd.com. “There are two main stages — compensated and decompensated. In compensated cirrhosis, you won’t have any symptoms. There are still enough healthy liver cells to meet your body’s needs. They compensate, or make up for, the damaged cells and scarred tissue.”
But Ginette has passed that stage of the disease and suffers through the build up of fluids to the point she “looks like I’m 7-months pregnant, and it’s difficult to breathe or eat,” she says. And it makes blood vessels in her esophagus bleed. She now goes to the doctor to be drained of these toxic fluids every 10 days.
Her liver has deteriorated to the point that her only chance now is a liver transplant.
“It’s unknown how you get it,” she explains, “and they don’t know what to do except treat the symptoms, until you can get a transplant.”
After most of her life dealing with the disease, everything changed one day in 2010. “That was the first time it happened and I almost didn’t survive that,” she says. When her esophagus started to bleed she fainted and “broke my back. I crawled to the phone [to call for help]. That’s what saved me.” A few weeks ago other veins started leaking and she ended up in the hospital once again.
She’s been on the liver transplant “list” through Stanford Medical Center since her late 20s, she explains. The doctors were sure she would need a transplant within a couple of years, but “I took really good care of myself and was able to stretch it out, until now.”
But she isn’t ranked high in the “Model for End-Stage Liver Disease” or MELD system. “The MELD score makes it fairer for most liver diseases,” she says, “but diseases have not fit that MELD score. There just aren’t enough organs to go around. I was told that there wasn’t much chance to get a cadaver liver [from someone who has died] and I need to find a living donor.”
Of course there are some criteria, like the donor needs to be 18-55-years old, and have a blood type A or O (O positive or O negative is OK), and they’d have to pass a medical evaluation at Stanford.
“They would take the right lobe of a healthy liver and transplant that into me,” she says. “In six to eight weeks, the donor’s liver regrows. The liver is the only organ that does that.”
Her friends have put up a website detailing Ginette’s story and formalizing the search for a donor, see: www.ginettereitz.com.
“Stanford,” she says, “likes it to be someone I know and make sure the donation is done out of altruism. I’ll breathe a little easier when I hear from Stanford about a live donor.”
By Neil Farrell