Limited Sobriety Pathway Saves the Lives of Those With Little Hope

Limited Sobriety Pathway Saves the Lives of Those With Little Hope

One Patient Finds a Path to Giving Back

Getting a new liver through Limited Sobriety Pathway gave Jak Cooper a new lease on life. 

Jak Cooper, a liver transplant recipient, describes the origins of her cirrhosis: “I drank heavily growing up. With difficult life events like deaths and my husband being diagnosed with cancer, I found myself without the life skills I needed to deal with those things, and I drank. Two and a half years ago, I was diagnosed with cirrhosis and was very sick.”

Cooper received her diagnosis at El Camino Hospital, where she was treated over a several-month period for edema, jaundice, and hepatic encephalopathy, a brain dysfunction that occurs in people with advanced liver disease. Finally it became clear that she needed a new liver, and the community hospital began a referral process for transplant evaluation.

“I was so sick at this point, I didn’t have the luxury of time,” she says. “I was told that without a transplant, I had a more than 50% chance of dying within three months.”

Two hospitals declined to consider Cooper for a transplant because she hadn’t been six months sober. Then Cooper was referred to Stanford, where she was taken by ambulance, underwent an expedited evaluation, and was deemed eligible for Limited Sobriety Pathway. Once a liver match was found, she underwent the transplant. “This was the beginning of a whole lovely, crazy journey,” she says.

A New Approach to Transplantation Eligibility

Before Limited Sobriety Pathway was established, patients with acute liver disease from alcohol use or severe alcohol-induced hepatitis had to demonstrate six months of sobriety before being eligible for a liver transplant. About 70% of patients died in the interim. In 2017, Aparna Goel, MD, a general and transplant hepatologist and clinical associate professor of gastroenterology and hepatology, established Limited Sobriety Pathway to remove that arbitrary timeframe. “We found that six months of sobriety was not a magic number for transplant or sobriety success, and we were doing a disservice to a group of patients who were very ill,” she explains.

While Cooper didn’t need six months of sobriety, she did have to demonstrate that she was a good transplant candidate. Says Goel, “We look for candidates who have insight into their addiction and show a willingness to participate in our relapse prevention program.”

Because Cooper had ceased drinking the day she received her cirrhosis diagnosis and immediately began participating in a 12-step program, she was accepted for a transplant. She also had to sign a contract to commit to the postoperative Intensive Outpatient Program. “Being given a body part of somebody’s loved one is not something you do lightly, and it was a commitment I was more than willing to make,” she says.

“They set you up for success straight out of the gate. With all of these different disciplines working together, they put this scaffolding around you to hold you up so you can stay sober, fit, and healthy.” – Jak Cooper

A Model That Sets Up Patients for Success

Several elements beyond the eligibility period distinguish Limited Sobriety Pathway.  Explains Allison Kwong, MD, a hepatologist and assistant professor of gastroenterology and hepatology, “We have systems in place to be successful. We begin with a comprehensive psychosocial assessment to determine whether the patient is likely to take care of a new liver successfully. And we have long-term monitoring after the transplant to help patients stay on track with their sobriety.”

Helping patients navigate the pathway is a robust, multidisciplinary team, representing hepatology, addiction medicine, psychiatry, social work, substance use navigation, and transplant surgery. This team works on two fronts: managing the patient’s addiction and managing liver disease.

Cooper, who celebrated two and a half years of sobriety last August, credits the “compassionate and passionate” Limited Sobriety Pathway team for her second chance at life. “They set you up for success straight out of the gate. With all of these different disciplines working together, they put this scaffolding around you to hold you up so you can stay sober, fit, and healthy,” she says.

Ongoing resources are crucial because “the underlying cause doesn’t go away after a transplant,” says Cooper. “I am still an alcoholic in recovery, and my illness needs continuing management – just as a person with diabetes needs to continue to take insulin. Under this program, I have access to these resources for as long as I need them.”

Adds Goel, “Our patients do incredibly well – better than what we see in the literature for graft survival and return to alcohol use. And they know that at any time going forward they have people to turn to for support if they need it.”

Cooper concurs, crediting substance use navigator Linda Jarit and social worker Amanda Norwood for support following her recovery. “We have one-on-one checkups and meet in a group to talk about how to deal with life as it happens. They are my cheerleaders – they are rooting for me and want the very best for me,” she says.

Click image to expand.

By the Numbers
108 patients have received transplants through Limited Sobriety Pathway, with a 98% survival rate.

Giving Back as a Way of Giving Thanks

Following her lifesaving liver transplant, Jak Cooper’s commitment went beyond staying sober – she also wanted to give back to others with alcohol use disorder.

In her first year posttransplant, Cooper worked with the nonprofit organization Sober Livers to educate the public about alcoholism and liver disease. “There’s still a stigma related to liver transplants for people with alcohol use disorder, and I wanted to help lessen that,” she explains.

Cooper has also spoken with other patients at Stanford Hospital who recently had a liver transplant and wanted to talk to someone with firsthand knowledge. These experiences inspired her to become state certified as a peer support specialist and work with Addiction Inpatient Medicine patients. Says Cooper, “I met with my assigned peer support specialist Alicia Ludlow when I was in the hospital. I felt that she understood what it’s like to be scared and trying to find your way out of addiction. Her humanity and humor were so impactful that I decided I wanted to serve that role for others.”

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While the Pelvic Health Center serves all genders, the majority of patients are women of middle or older age suffering from a wide array of pelvic floor disorders.

These conditions negatively impact quality of life with symptoms such as urinary and/or fecal incontinence, constipation, and pain or pressure in the pelvic area. It is not unusual for the center’s patients to have a long history of being dismissed or undertreated elsewhere. The unfortunate reality is that anorectal and pelvic health is not covered adequately in many medical training programs, so physicians simply aren’t equipped to handle the problem. They may recommend Kegel exercises or, in more severe cases, refer patients for surgery, but that is about the limit of their options.

Finally, a Comprehensive, Multidisciplinary Solution

The Stanford Pelvic Health Center, on the other hand, provides coordinated, multidisciplinary care that includes the specialties of gastroenterology, colorectal surgery, urogynecology, urology, pain anesthesiology, and physiotherapy. Neshatian, clinical associate professor of gastroenterology and hepatology, specializes in neurogastroenterology and benign anorectal disorders.  

Her patients receive a comprehensive evaluation, including assessment of anorectal function, coordination, and sensory function via high-resolution anorectal manometry, as well as three-dimensional dynamic ultrasound to evaluate the anal sphincter and surrounding muscles, and magnetic resonance imaging defecography to dynamically visualize overall pelvic organ structure and function.

Following this assessment, the multidisciplinary team works together to determine the best multipronged treatment course. “We offer comprehensive medical management, physical therapy, and combined surgeries,” says Neshatian. By “combined surgeries,” she means that two surgeons, one colorectal and the other specialized in urogynecology, may operate on a single patient during the same surgery to ensure that all the pelvic issues are addressed at once by the most experienced hands.

Innovative Research in Pelvic Health

In addition to seeing patients, the Pelvic Health Center conducts innovative research into an aspect of health that remains poorly understood, so that physicians all over the world can better treat their patients. For instance, Neshatian and her team are working to identify specific targets for measures of pelvic health, such as the size and quality of the skeletal muscles, that must be achieved in order to treat or prevent pelvic symptoms in aging women.

One important learning from her research is the importance of muscle size and quality, not just in the pelvic area but overall. “In order to have better pelvic health, you need better muscles,” says Neshatian. “If the person is deconditioned, the muscle is replaced by fat, and the likelihood of having these problems is certainly higher. We proposed that if we put women through physical activities, such as resistance training, to improve overall physical conditioning, symptoms related to pelvic floor dysfunction such as fecal and urinary incontinence will improve as well.” Research is currently ongoing to evaluate this hypothesis.

Leila Neshatian, MD

You laugh, you pee. This is the reality for many middle-aged women, especially if they gave birth vaginally. If it’s just a few drops, it’s usually no big deal. But sometimes it’s not just a few drops. Then there is the flip side of the coin — fecal incontinence. Now we are getting into territory so taboo and embarrassing that people do not even want to bring it up with their physicians.

Pelvic Health Problems — Embarrassing and Undertreated, Patients Suffer in Silence

Pelvic health is fundamental to good quality of life. Nevertheless, comprehensive multidisciplinary care in this area can be hard to come by. That’s why patients travel from all over the country to receive the kind of specialized care given by Leila Neshatian, MD, in collaboration with a team of dedicated clinicians who work alongside her at the Stanford Pelvic Health Center.

While the Pelvic Health Center serves all genders, the majority of patients are women of middle or older age suffering from a wide array of pelvic floor disorders. These conditions negatively impact quality of life with symptoms such as urinary and/or fecal incontinence, constipation, and pain or pressure in the pelvic area. It is not unusual for the center’s patients to have a long history of being dismissed or undertreated elsewhere. The unfortunate reality is that anorectal and pelvic health is not covered adequately in many medical training programs, so physicians simply aren’t equipped to handle the problem. They may recommend Kegel exercises or, in more severe cases, refer patients for surgery, but that is about the limit of their options.

Finally, a Comprehensive, Multidisciplinary Solution

The Stanford Pelvic Health Center, on the other hand, provides coordinated, multidisciplinary care that includes the specialties of gastroenterology, colorectal surgery, urogynecology, urology, pain anesthesiology, and physiotherapy. Neshatian, clinical associate professor of gastroenterology and hepatology, specializes in neurogastroenterology and benign anorectal disorders. Her patients receive a comprehensive evaluation, including assessment of anorectal function, coordination, and sensory function via high-resolution anorectal manometry, as well as three-dimensional dynamic ultrasound to evaluate the anal sphincter and surrounding muscles, and magnetic resonance imaging defecography to dynamically visualize overall pelvic organ structure and function.

Following this assessment, the multidisciplinary team works together to determine the best multipronged treatment course. “We offer comprehensive medical management, physical therapy, and combined surgeries,” says Neshatian. By “combined surgeries,” she means that two surgeons, one colorectal and the other specialized in urogynecology, may operate on a single patient during the same surgery to ensure that all the pelvic issues are addressed at once by the most experienced hands.

Leila Neshatian, MD

Innovative Research in Pelvic Health

In addition to seeing patients, the Pelvic Health Center conducts innovative research into an aspect of health that remains poorly understood, so that physicians all over the world can better treat their patients. For instance, Neshatian and her team are working to identify specific targets for measures of pelvic health, such as the size and quality of the skeletal muscles, that must be achieved in order to treat or prevent pelvic symptoms in aging women.

One important learning from her research is the importance of muscle size and quality, not just in the pelvic area but overall. “In order to have better pelvic health, you need better muscles,” says Neshatian. “If the person is deconditioned, the muscle is replaced by fat, and the likelihood of having these problems is certainly higher. We proposed that if we put women through physical activities, such as resistance training, to improve overall physical conditioning, symptoms related to pelvic floor dysfunction such as fecal and urinary incontinence will improve as well.” Research is currently ongoing to evaluate this hypothesis.

This is a unique educational opportunity because, to be honest, anorectal and pelvic training is missing from many programs.

— Leila Nehastian, MD, clinical associate professor of gastroenterology and hepatology

 

In a particularly innovative project, Neshatian and her team will be examining the relationship between pelvic health and the microbiome. “We know that the microbiome changes in patients who are frail,” she explains. “This becomes a vicious cycle in terms of the microbiome causing frailty and frailty changing the microbiome. We think that because frailty can lead to pelvic pathologies, by changing the microbiome, you can prevent frailty and therefore improve pelvic health.”

They would also like to determine how the physical therapy that they offer at the center improves symptoms, looking specifically at how it produces changes in overall muscle strength and whether it affects the microbiome. Findings of this research should be available in the next few years, which will give treating physicians around the world new information and tools to use with their patients.

Training a New Generation

Given the unique nature of the services provided and the research taking place at the Pelvic Health Center, training is an important component of the program. A clinician educator, Neshatian is GI program director of the Neuro-Gastroenterology Fellowship, which includes training at the Pelvic Health Center. Others who receive training at the center are medical residents as well as fellows in Female Pelvic Medicine and Reconstructive Surgery (FPMRS) and Gastroenterology. “This is a unique educational opportunity because, to be honest, anorectal and pelvic training is missing from many programs,” she says.

The need for and interest in a comprehensive approach to pelvic health is so great that there are plans to expand the Pelvic Health Center, with a move to a larger space in Pavilion E anticipated in the near future. This will provide the space they need to increase their clinical staff and ultimately help more patients.