The Other Side of the Healthcare Equation: Nurse becomes patient

Jennifer Slepin’s Story

As a faithful blood donor and Registered Nurse, Jennifer gave blood annually for many years.  Most of the blood in the United States is given by donors who have given before. For Jennifer,  giving blood was a badge of honor; a point of pride.  

Back in the early 1990s (the beginning of Jennifer’s story) because of the HIV crisis and increasing Hepatitis C infections linked to blood transfusions, the FDA recommended that all blood banks start testing the existing supply and then screen all donations in real-time.  

When Jennifer got a letter from the Red Cross—she was very surprised by the content. 

Here’s Jennifer: “I got a letter from the Red Cross: ‘your blood tested positive for HCV (Hep C),  so, you are no longer eligible to give blood.’ There was very little known about Hep C at the time and so I took it as a piece of information. Nothing more. The letter suggested I call my doctor,  so I did.” 

A diagnosis with a serious disease by-letter—Jennifer was not alone in this experience. She was not looking to get diagnosed when she made her blood donation. 

Millions of Americans have Hep C, and even today about half of them are unaware of it as most do not have symptoms. HepC is a virus that attacks the liver. It is spread by blood and blood products—transfusions, tattoos, and the like. 

When reflecting on her diagnosis with Hep C, Jennifer said, “For me, Hepatitis C was a long path from diagnosis to treatment. I was diagnosed in 1993 and cured in 2016.” 

Jennifer lived with the virus for over 30 years. Her journey from abrupt diagnosis and ultimately the treatment that led to a cure set her on a path of advocacy and leadership in Hep C  eradication in her own right as a healthcare provider.  

Jennifer’s Initial Treatment Experience

After her diagnosis-via-letter, Jennifer immediately reached out to her primary care provider who told her it was a slow progressing disease and recommended a  “watch and wait” approach. Back in 1993, the only available treatment (interferon injections plus oral ribavirin given weekly for a year–52 weeks) came with low expectations for a cure and a long list of intense side effects. Given that the disease was described as slow progressing, Jennifer opted to delay treatment. 

Here’s Jennifer: “The treatment was highly toxic and had harsh side effects like depression and flu-like symptoms. Basically, it was like getting a shot of the flu every week. So, I was more about ignoring it rather than treating it.” 

Besides monitoring her own health, Jennifer also was keeping a watchful eye over her brother.  At the time, her brother, a lifelong alcohol and IV drug user who also had HCV, was declining in health. Her brother’s problems came to a head right around the time of her diagnosis, which contributed to her decision to put off treatment.

Nurse Becomes Patient: Experiencing the Other Side

Part of Jennifer’s resistance to getting treatment was her in-depth experience as a nurse. She  said, “I’ve never been a good patient. As a nurse, I had a “fear” of being on the other  side of the care equation.” 

It can be difficult to reconcile that your vast knowledge and dedication to the wellbeing of others won’t save you from your own health crisis.  

Here’s Jennifer: “As a nurse, keep in mind, I am not the typical consumer of healthcare. I hid behind my shield of immunity. My bargain with the devil. If I do good, nothing will happen to me. A mix of denial and magical thinking.” 

The Decision to Begin Treatment

In 2008, Jennifer got a CT scan that showed early cirrhosis of her liver as a result of the inflammation caused by untreated Hep C. Cirrhosis is a scarring of the liver because of chronic inflammation caused by a virus-like Hep C or other types of irritants like alcohol or drugs. Cirrhosis can lead to liver failure and liver cancer. The cirrhosis diagnosis was a call to action and Jennifer realized that the disease was progressing, and she could no longer put off treatment. Working with a community-based gastroenterologist, she began the 52 weeks of Interferon injections + oral Ribavirin.  

Before treatment began, the nurse at her physician’s office counseled Jennifer on what to expect emphasizing the significant side effects. She said that if Jennifer experienced any depression to contact her or the provider immediately.

After some time, Jennifer did experience depressive symptoms. Remembering what the nurse had said, she followed her instructions carefully and called two or three times to talk about the depression she was experiencing; expecting counsel and advice on what to do next. 

As an experienced nurse, Jennifer knew what to expect when contacting the nurse for help and advice. After years of providing compassionate care to her patients, she anticipated receiving the same. However, Jennifer found the nurse’s response to be less than compassionate…  

Here’s Jennifer: “She showed zero empathy and was not the nurse I expected. She was punitive. I was doing as she had asked and encouraged me during our educational sessions and now, I was being “punished”. The nurse quickly said, ‘well if you are feeling this much  depression, we’ll stop the treatment.’” 

Shocked, disappointed, and equipped with her years of experience, Jennifer realized the nurse’s reaction to stop treatment seemed like an extreme response. At this point, Jennifer turned to  Duke University, an academic medical center. Her brother was being treated there at the time for his liver disease, so Jennifer reached out to his doctor–who took her on as a patient.  

The Ups and Downs of Treatment: Third Time’s the Charm

Once at Duke, Jennifer continued treatment but after 14 weeks a recommended test was performed to measure whether or not the treatment was working as expected. The test measures what is known as “viral load”, the amount of virus in the bloodstream.  

Here’s Jennifer: “With the old treatment of Interferon and Ribavirin, the hope was that you would reach a certain reduction in viral load.  If this happened, there was an 80% chance of a cure. I was tested at 14 weeks and my viral load had not reduced as expected. They told me there was very little chance of a cure given my response to treatment. We made the decision to  stop.” 

The disappointment of the failed treatment, her brother’s recent death, and a move cross country to San Francisco in 2008 stand as a whirlwind time in Jennifer’s life. With her move to  California came the need to find a new doctor to monitor her health and her Hep C. Her doctor at Duke provided a recommendation for a physician in San Francisco.  

Here’s Jennifer: “My doctor at Duke recommended that I get in touch with Dr. Norah Terrault at UCSF when I arrived in San Francisco. He wrote to her himself. I did see her once and then tucked the notion of treatment away again. I had uprooted myself and left everything I knew to move to San  Francisco. I would occasionally go to the doctor to get checked to monitor the progression. Who  knew that 11 years later, Norah and I would be working together to cure Hep C.” 

Round 2: Some Hope and Progress 

Given all the changes in her life and the disappointment with the lack of response to treatment,  Jennifer went back to “watch and wait”  mode. Importantly, she had connected with her new doctor and established that relationship when she arrived in San Francisco. This way, when symptoms flared up again, she would have somewhere to turn for proper care when she was ready.  

Here’s Jennifer: “In 2014 I started to show symptoms of palmar erythema, the stigmata of liver disease/damage.[this is where the palms of the hands become a reddish color] By 2015,  new and more effective medicines were available to treat Hep C. These were given in combination with the same drugs I had before only for a shorter duration of time for those who had been treated before.”. 

After completion of this round of treatment, Jennifer’s viral load decreased but was still detectable. The doctors told her that she wasn’t cured and that she was going to need to be treated again. Jennifer said, “I was devastated.  I looked healthy on the outside, but I had cirrhosis. I was deeply disappointed when  the second treatment didn’t work.”  

Round 3: Finally Cured 

Here’s Jennifer: “In 2015, we decided to try the treatment again. I took a medical leave from my job. This was the third go-round. This time, I was put on Harvoni + Ribavirin, but no interferon. I remained on this “cocktail” for 24 weeks instead of the usual 12, because of my resistance to the first 2 treatments.  Then, I had my labs drawn to see if it had worked.” 

Coming full circle, Jennifer was alone in a hotel room when the “letter” arrived in her email box with the results of her test which would tell her if the viral load had reduced to an undetectable level.  This is also known as SVR12, or systemic virologic response at 12 weeks.  SVR12 means you are CURED!!

Jennifer said, “I was alone in the hotel room, and I got the Quest email from the lab with my results. I was a little afraid to open this being on my own. And when I did, it said ‘Virus  Undetected!’ I was dancing on the bed. The cure was the catalyst for the work I am doing now  with the doctor that cured me.”

Speaking of her experience with Hep C, she said, “Without the new direct-acting antivirals, my liver would have continued to scar and degrade.  This cure was a new lease on life!” 

Since then, the treatment for Hep C has significantly improved. In the beginning stages of her treatment, Jennifer’s only option was a regimen fraught with side effects, quality of life impairment, and high treatment failure rates. Now, the newer regimens are far less complicated,  effective, and of shorter duration with very few side effects. 

Compelled to discover who she could be without Hep C, Jennifer set out on a solo road trip in  June of 2016 to raise awareness and to learn how other communities across the country were coping with the  Hepatitis C epidemic. 

To the Present: Jennifer’s Work with HepCarestream 

Her six-month road trip resulted in the formation of Hepatitis C Clinical Education Group, Inc., a  501(c)3 nonprofit organization committed to working in underserved communities to educate primary care providers on how to treat Hep C. From January of 2018 through March of 2020, she was on the road throughout northern California helping local providers in underserved areas learn to treat Hep C. 

Traveling in her Airstream, Jennifer helped build capacity to cure HCV by connecting local-area clinicians with knowledge-sharing networks, creating education-to-cure pathways, and helping innovate healthcare delivery. She did this work in conjunction with Norah Terrault at the  University of California San Francisco (UCSF). 

In partnership with UCSF’s Project Extension for Community Healthcare Outcomes (Project  ECHO), she trained, educated, and supported rural general practitioners and other healthcare providers on best practice treatments for the hepatitis C patients they encounter in their communities. Jennifer helped build capacity to cure Hep C by educating providers and creating linkages to care within the communities she serves. 

Reflecting on Her Experience 

As Jennifer looks back on her healthcare journey, she believes that her background as a nurse made it easier for her to navigate this complex system. In addition, she was treated by a doctor who was one of the foremost experts in the field.  

Early on, one of Jennifer’s greatest disappointments was the abrasive nurse and how poorly the system treated her. She said, “That nurse early on in my experience really angered me. I made that decision to be a patient: a compliant patient and report my side effects and I was penalized for that. That was a turning point for me, and I went and sought out care at an academic medical center.  Someone less knowledgeable may have given up.” 

As for words of advice, Jennifer recommends getting educated and seeking counsel from a  trusted and competent source.  This could be someone’s primary care provider or an academic medical center.

Here’s Jennifer: “I waited too long to get aggressive about receiving treatment. I was nonchalant while the virus was destroying my liver. Denial is strong because the disease is  silent and asymptomatic.”

She also believes that her experience as a nurse made her hesitate to be a patient.

Here’s Jennifer: “Being a patient and seeing what they had to go through with the old medications—that was tough because in the past I had always been in the driver’s seat as the caregiver. Now, I was actually in the seat of the patient. I felt a lot of resistance and was scared of the inefficiencies that I knew existed in the system. The healthcare system is a chain, and the chain is only as strong as the  weakest link.”