Jacqueline’s first words that I ever read were, “I never thought of myself as an alcoholic. I never lost a job because of it, had no DUIs, my relationships were alright. I always had other excuses for why I would end up in the emergency department. It wasn’t until last year, when I spent 46 days in the hospital and almost died, that I was diagnosed with alcoholic liver disease. A few months later, I ended up on the liver transplant list. I am now sober, but I’m living my life waiting for a miracle recovery or for my MELD score to skyrocket and get a liver transplant.” Jacqueline wrote to me when she read the NPR article about the increase of alcoholic liver disease in women. Immediately, I had to connect with her. When we chatted, Jacqueline had recently had surgery, so she wasn’t ready at the moment to share, but it was enough to make an impact on me. I made sure to save her number.
Today, a text notification went off, and when I went to swipe up on my screen, the miracle had happened, Jacqueline reached out. She is feeling better and is off the transplant list! Now that we finally had the opportunity to talk, the question was, how did she get here?
Jacqueline was born in a suburb of Boulder, Colorado, and spent her childhood between Colorado and a college town in Minnesota. We didn’t chat too much about her early childhood. Still, like many other people with alcohol abuse disorder, Jacqueline started drinking and smoking cigarettes in middle school. Early on, Jacqueline was successful at managing both drinking and life’s responsibilities. Through middle school and high school, she went to school, worked as a nanny and part-time in restaurants, and practiced all kinds of dance at an art academy, and of course, partied.
Like many of the women I get the honor of speaking to, Jacqueline is a trauma survivor. Her voice shook as she recalled the experience of getting raped when she was 16. Her parents were out of town, and there were friends over for a party. The guy she had a crush on ripped peace from her that night.
In her own home.
In her own bed.
Her friends turned their backs on her, victim-blaming her because she happened to have a crush on him. So, what about her family? Jacqueline wanted to clarify that her mother always has had the best of intentions for her. Still, Jacqueline mentioned that her mother struggled to get Jacqueline the support for her mental health needs at that turning point in her life. Trapped by the stigma of mental health problems, Jacqueline’s mother allowed her to get therapy. However, a thorough diagnosis of the effects of the trauma on Jacqueline and difficulties she had with learning were never fully addressed at that time. In turn, Jacqueline’s coping mechanisms while becoming a young woman were anything but healthy.
After high school, Jacqueline’s parents sent her to Colorado on her own to escape an abusive boyfriend in Minnesota. He constantly tried to control her, kept her in spaces against her will, and threatened to injure her. Jacqueline suffered this ordeal in secret until she confided in her sister-in-law, who alerted her parents. It was a significant change to be in a different state suddenly, but it was incredibly liberating to be on her own. She had a car, followed her own schedule, and did what she wanted. She was independent. “I finally wasn’t grounded anymore!” She exclaimed. Jacqueline provided for herself, working multiple jobs, including medical secretary, emergency room registration, teaching dance, and bartending. Despite her many positions, she managed to party, drink, and do well.
Relationships typically didn’t help make Jacqueline’s life better. She was drawn to unavailable individuals who already in relationships, married, or simply emotionally unavailable. She was a hopeless romantic that never wanted to fall in love. Once, there was a doctor she was seeing who had seen her wit and intelligence. He encouraged her to enroll in college. She did well in her first year, but suddenly things “hit a wall” for her that summer and her drinking started to take a turn for the worse. Though Jacqueline did well in school, she accepted a job she was passionate about starting. Suddenly, the position was dissolved, and she felt lost. Lost, with student debt, and alone again.
Eventually, circumstances led Jacqueline to the live music scene. She met her current partner of five and a half years when she saw him at a concert. Ever since they connected, they’ve been inseparable. They have supported each other through all of life’s challenges, including Jacqueline needing to turn her life around.
The couple drank together, being often around musicians. They had a lot of fun, and though they sometimes had drunken arguments, they enjoyed each other, too. Despite their heavy drinking, the two were able to buy a home, keep employment. They functioned successfully, so though Jacqueline deep down inside she knew something was probably wrong, it was easy to ignore. “I wasn’t what you consider a typical alcoholic.”
Another incident struck Jacqueline’s life that brought her drinking to another level of escalation. She was injured at work and had to take time off. She also had to fight her then employer in court to get compensated. Suddenly being trapped at home, being in pain, and being stressed about her finances, Jacqueline needed to numb herself to escape the pain of everyday living in these circumstances. Alcohol relieved her stress and her anxiety. Between her and her partner, they drank about two-thirds to three-fourths of a handle of liquor a night. They drank like this from 2018 onward.
Jacqueline eventually started noticing that she was eating less. She wasn’t thirsty anymore, either. It would be like this for days. She was getting dizzy more regularly. She was run down and just felt sick. Her dizzy spells were so powerful that she went to the emergency room repeatedly in 2019 to address “low potassium levels” or “dehydration.” I asked, “Did your family notice?” She responded, “They were in Minnesota, so they had no clue. If they ever did discover she was in urgent care or the emergency department it was just ‘dehydration,’ or a ‘migraine.’ The only one who knew was my partner (because he drank, too),” she replied. “He admits now, that he was lying to himself, but he didn’t know the full truth. A lot of the times I ended up in the ED (emergency department) and told the medical staff how much I was struggling, and he would be frustrated because I had never voiced those complaints to him.”
Meanwhile, I thought the doctors MUST have noticed something was going on with her. I asked, “I mean, didn’t they run labs on you? You had to have liver disease already, and they didn’t check your liver enzymes? They never diagnosed you with ALD?” I was shocked at the fact that no one had pointed out the simple fact to Jacqueline that alcohol was killing her. Jacqueline, I could almost envision her shaking her head, stated, “No, just nausea, dehydration, and tell me to follow up with my doctor. So I’d quit for a few weeks to seem better, but then I would start to drink again. I avoided doing blood work. I was still functioning, so I didn’t think I needed to stop. I acted like I was fine. My bills were paid, no DUI, no trouble with the law, no relationship problems at the time, my relationship with my family was fine, my relationships with friends were good, too.” “So you never thought there was something wrong?” I asked. She replied, “Well, I always knew something was wrong with me, I knew it the whole time.” I understood exactly what she meant.
Finally, Jacqueline had her life-changing hospital visit. First, she had had an emergency room visit, and though she still felt sick after getting fluids, they released her to go home. She and her partner stopped to get groceries when suddenly everything started going black for Jacqueline. “I saw a tunnel closing in around me, I was going to faint. He grabbed me and took me right back to the hospital.”
At the hospital, things took a turn for the worse.
“I became yellow, my MELD score was 29, my bilirubin level was 30 (normal is under 1.2). I looked like I was eight months pregnant from ascites. I was dying. I had to stay in for 46 days.” For reference, a MELD (Model for End Stage Liver Disease) score is a number that qualifies a person for a liver transplant, so the higher the number, the worse shape the person’s liver is in. The highest MELD number is 40, so Jacqueline’s liver was in bad shape. Jacqueline needed to get on the liver transplant list, but she would not qualify without abstinence given her alcohol consumption history.
So what did that look like? Jacqueline had to take a PETH test every two weeks for six months to prove she could stay away from alcohol. Unlike a breathalyzer that only checks for a present blood-alcohol level, a PETH test can detect any alcohol consumption from up to two weeks before the exam. Jacqueline was able to stay sober and get on the list, and once she got on the list, she just had to take the PETH test once a month.
But Jacqueline’s NOT on the transplant list now, right? She’s not.
During our conversation, Jacqueline informed me that her numbers, though not ideal, have stabilized. Her bilirubin levels dropped from 30 to a 4, and her MELD has consistently been a 12, down from 29. Today, Jacqueline is healthy enough not to require a liver transplant. She’s back to looking normal; she happily said, “I’m not yellow anymore!”
“So you’re safe to live a full adult life now, right?” I asked. Jacqueline is only 33 years old, just three years younger than me. Jacqueline paused, “Well, because I’m so young, the chances of me still needing a transplant when I’m older is doubled because I’m so young. So I’m really not off the hook yet.”
Though she has stabilized, Jacqueline does have mild cirrhosis of the liver. The liver can sustain damage up until the point of cirrhosis. At that point, the scar tissue doesn’t go away, it’s irreversible. That means Jacqueline has to do a lot of work to protect her liver from any further damage. Work that she will have to do until the day she draws her last breath.
This new life with permanent alcoholic liver disease is not an easy one for Jacqueline. For the rest of her life, Jacqueline has to be on a low sodium diet, consuming fewer than 2000 mg a day. Her liver doesn’t filter her blood properly, so fluids that a healthier person may be able to pass through urine will accumulate in her body. These fluids could press on her abdomen and potentially fill her lungs with fluid, so Jacqueline has to monitor her fluid intake and take diuretics.
She has a stomach ulcer and varices on her esophagus. According to Mayo Clinic, “Esophageal varices are abnormal, enlarged veins in the tube that connects the throat and stomach (esophagus). This condition occurs most often in people with serious liver diseases.
The vessels can leak blood or even rupture, causing life-threatening bleeding.”
I had to ask, “ And most importantly, you can’t drink. How do you stay away from alcohol?” Jacqueline explained that she uses cannabis for physical and emotional ailments. She takes microdoses of cannabis in candy form in the morning. It helps to keep her anxiety down and bring her appetite up. She has tried psych meds but didn’t respond well to them. “I don’t smoke the actual cannabis flowers, just the oil concentrate or eat the candies. It helps me get through. My biggest thing to not drink is focusing on how much it would hurt my partner, family, and team of doctors. They worked so hard to help get me here. It’d be a kick in the face for me just to go back out and drink. I had a relapse a year ago, and it landed me in the hospital. It was stupid, I thought I would have one, but course it wasn’t just one. It almost killed me.”
“Do you participate in any support groups?” Jacqueline’s support is her partner, her therapist, and her garden. She explained her coping by saying, “I believe in Mother Nature. Gardening really helps me. My plants really help me. For me, drinking wasn’t so much about the physical addiction, and it was always emotional. I coped every day. It was for my anxiety, for social anxiety. Today, my garden helps me.”
“Every day is excruciatingly grueling, especially those days when nothing goes right and you just want to shut out the world. That is why I continue to surround myself with plants and my garden. They remind me that they work so hard to become their most wonderful selves. Most people only appreciate them when they bloom, but I love them from the second I plant them until I mourn them dying and use them as compost to grow the next generation.”
(Just for some added detail, medical problems Jacqueline was treated for in during her 46 day stay because of her alcohol consumption was severe sepsis, acute respiratory failure with hypoxia, ascites, alcoholic hepatitis, liver failure, multiple hernias due to the ascites, IBS, severe diarrhea, C Diff Infection, anemia, jaundice, potassium deficiency, vitamin D deficiency. Jacqueline had a paracentesis to remove fluid from the abdominal cavity and had to have a PICC line placed to receive medications and have labs drawn as all of her IV’s started to blow out and the lab couldn’t get a proper stick.)