COVID-19 | Infectious Diseases
My Liver Is Turning To Stone. I Need A Living Donor, And Soon
First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.Ca/essayguide.
Open this photo in gallery:Illustration by Mary Kirkpatrick
Some days, there's nothing better than escaping into someone else's mind. Mexican painter Frida Kahlo is known for her raw and confessional artworks, most of which gave a panoramic view into her thoughts, dreams, nightmares, fears and hopes. As an art historian, I can appreciate Kahlo's oil-on-canvas proclamations about the beauty and brutality of life, illness and pain; I am especially drawn to one work in particular: What the Water Gave Me. In it, we see her legs submerged in a bathtub full of tiny floating images that represent key moments in her life, following a traffic accident as a young woman. This painting has become a metaphor for my present circumstances – and a reminder that even in dire situations, there can still be grace.
You see, at 39, I am living with End-Stage Liver Disease (ESLD) and urgently require a liver transplant. Thankfully, because the liver regenerates, I can receive a lobe, or half a liver, from a living donor and it will grow to full size in me, and completely regenerate in the donor.
My health crisis began a decade ago after developing sepsis, which required nearly two weeks in hospital. I was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare autoimmune liver disease with no cure that slowly covers my liver in layers of scar tissue, ultimately turning it into stone.
Despite my condition, I have managed to live a busy and joyful life this past decade – some days, my health was so good that I forgot I was so ill. Shortly after my diagnosis, I moved to England and completed my PhD in art history, at the University of Cambridge. There, I made wonderful friends, laughed endlessly, saw, studied and taught about beautiful art. I remember the thrill of seeing the Unicorn Tapestries at the Cluny Museum during a research trip to Paris; watching the sunrise, sprawled on the bowling green in a ballgown after a May Ball; the sugar rush of consuming too many jaffa cake biscuits during Sunday tea in our graduate parlour; and the intensity of non-stop post-Brexit conversations in the pub.
But PSC is a sly beast because it tricks you into thinking you're out of the woods. It can be patient, waiting for you to take your eyes off it for just a split second and then it pounces.
In 2019, it pounced. While waiting to defend my dissertation, I decided to return to my hometown of Toronto. Shortly after arriving, I began to develop devastating symptoms that required 17 days in hospital. It wasn't until two months later that I was finally well enough to go back to Cambridge.
Almost a year later, having defended my thesis, I returned to Toronto, this time to ride out the pandemic. Once again, I found myself exhibiting terrifying symptoms like spontaneous internal bleeding that required numerous hospitalizations and medical procedures. It was becoming clear that this beast of an illness was racing full tilt. Somehow, though, I once again became stable and well enough to take up a postdoctoral fellowship in Florence, where I spent nearly a year doing everything I did in Cambridge – except in Italian – and it was glorious.
Then in October of 2022, the disease decided it was tired of being in the wings and elbowed its way to centre stage. During a routine MRI, my doctors saw what looked like potentially cancerous growths/lesions on my liver. I moved back to Toronto immediately to undergo an emergency biopsy. Afterward, I was referred to the liver transplant team for immediate evaluation.
Last June, I was listed on the Ontario Transplant List. I am currently waiting and searching for a living liver donor with blood type O+ or O- to give in Toronto.
Despite the horrendous nature of my illness, the urgent need for a transplant and the uncertainty of a timeline, liver disease has also given me tremendous gifts. I have returned to a city that has always been so generous and good to me. I am supported by my colleagues at the University of Toronto, in the department of art history, where I work as a researcher and lecturer. I have reconnected with amazing friends.
Liver disease has allowed me the time and space to slow down and take a rigorous personal inventory; to re-evaluate my views, ethics, ambitions and motivations. It has also shown me a path of service as I am now a passionate advocate for organ donation awareness, which includes liver disease education and living organ donation awareness. I have found kindred spirits in the transplant community, who have welcomed me with open arms and are among my biggest cheerleaders.
If this is what End-Stage Liver Disease has given me, then I am grateful. I am all the richer for what I have received – this is what the "water" gave me. This is what keeps me afloat as I actively search for my liver donor match and the transplant that will happen.
Stephanie Azzarello lives in Toronto.
Woman's Constant Itching Turned Out To Be A Sign Of Rare Liver Disease
Flo Moffat-Charles was diagnosed with incurable liver disease primary sclerosing cholangitis shortly after her wedding. (Josh Moffat-Charles/SWNS)
A woman has explained how her constant itching turned out to be a sign of a rare, incurable liver disease.
Flo Moffat-Charles, 29, a fundraiser, from Kendal, Cumbria, had only been married to her husband, Josh, 29, for two months when she started feeling unwell.
As well as experiencing extreme fatigue and nausea, the newlywed also describes suffering from chronic itchiness on her hands and feet which she says felt like "ants you can't get rid of".
Flo had to undergo months of tests, and as a result the couple decided to cancel their "dream" honeymoon to South America.
Early this year she was eventually diagnosed with primary sclerosing cholangitis (PSC) – a rare liver disease, which has no cure.
She was also diagnosed with autoimmune hepatitis – an inflammation of the liver that occurs when the immune system causes damage to healthy cells.
Flo now takes 13 medications a day to manage her symptoms and has to place ice packs on her feet to help ease the constant itchiness.
Josh and Flo Moffat-Charles on their wedding day. (Josh Moffat-Charles/SWNS)
Having tied the knot in September 2023, the newlyweds were looking forward to their honeymoon trip when Flo started to experience symptoms including feeling sick, extreme tiredness and jaundice, but it was the unbearable itching on her hands and feet she really struggled with.
"She was sleeping with ice-packs on her feet. Taking cold baths in the middle of the night in an attempt to ease some of the symptoms," her husband Josh explains.
Flo underwent several blood tests, an MRI scan and ultrasound before she was diagnosed in January 2024 following a biopsy.
Her condition is progressive and currently has no cure, so she says she is currently taking each day as it comes.
"For a period of time it was really scary to think about anything long-term because it suddenly felt like so many decisions were out of our hands," she explains.
The couple had to cancel their honeymoon due to Flo undergoing tests. (Josh Moffat-Charles/SWNS)
She also describes how she found living with the symptoms of her condition as "all-consuming".
Story continues
"It was what we thought about every day," she explains.
"My feet, my hands and my legs felt like they were on fire.
"I still struggle a lot with some of the symptoms," she continues.
"The itching comes and goes but it's nowhere near what it was before. It's now kind of this acceptable level of basic itchiness."
The couple say they are now trying to embrace every moment following Flo's life-changing diagnosis and have bumped their dream of getting a dog "right up our priority list".
"Things do still feel quite fresh," she explains. "We're still in the process of doctors doing blood tests to make sure that they're happy with how my body's responding to medication.
"But once I feel like we're in a routine with that we're going to be doing as much as we possibly can and utilising every day of annual leave.
"It's just like a reminder every day that you've got to make the most of things."
Flo began to feel sick two months after she married her husband, Josh. (Josh Moffat-Charles/SWNS)
"When you get married and take the vows 'in sickness and in health', you don't expect to have that put to the test quite so quickly," Flo adds.
"Receiving a diagnosis of a life-long illness is not something we anticipated for the start of our marriage.
"It's been a difficult few months, but Josh has made me smile and laugh through it all.
"I know it's been so tough for him to watch me going through this and to feel so helpless.
"He stayed up every single night that I couldn't sleep due to the itching – fetching me cold towels to lay over my body in an attempt to soothe it."
Despite experiencing medication-induced insomnia Flo has been able to return to work full-time and Josh is now planning to run the London Marathon in April, for the charity PSC Support to raise awareness of the little-known disease.
"It's taught us to enjoy every moment and get out there and have as much fun as possible," Josh explains.
"You don't know when something like this is going to be around the corner.
"We have to hold out hope."
Flo started suffering from extreme fatigue, nausea and chronic itchiness on her hands and feet. (Josh Moffat-Charles/SWNS)
What is primary sclerosing cholangitis?According to the British Liver Trust primary sclerosing cholangitis is an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring (fibrosis).
The disease may occur alone, but frequently is associated with inflammatory diseases of the colon, especially chronic ulcerative colitis.
While the cause of PSC remains unknown, evidence suggests that the disease may be triggered by an unknown bacteria or virus in people who are genetically programmed to get the disease.
The disease can occur at any age and affects both men and women, although two male patients are affected for every female patient.
Though some people with PSC do not have any symptoms, common early symptoms include:
Late symptoms of PSC include:
itching
jaundice – yellowing of the skin and whites of the eyes
episodes of fever, shaking and chills can be distressing but are uncommon.
At the moment there is no known cure or specific treatment for PSC, but the British Liver Trust says symptoms such as itching can be treated with agents such as cholestyramine, rifampicin or naltrexone.
Additional reporting SWNS.
Real life: Read more Watch: Woman donates kidney to twin brother after tumour causes irreversible damageWeight-Loss Discovery: How 1 Woman Healed Fatty Liver And Lost 101 Lbs In A Year
If you're feeling tired and sluggish and can't figure out why, or you're carrying stubborn weight no matter how hard you try to ditch it or your doctor has noted that your bloodwork shows elevated liver enzymes, we have advice that might help. Detoxing the liver of trapped fat globules can improve overall health, energy and weight-loss results. And the time to act is now. "There's an epidemic of fatty liver disease in the US," says Ken D. Berry, MD, author of Lies My Doctor Told Me. Keep reading to learn how to help a clogged liver, plus how how a popular diet for fatty liver can help heal the organ and lead to weight loss.
What is fatty liver?We all grew up hearing how drinking excess alcohol can harm the liver. However, alcohol isn't the only thing than can hamper the function of this all important organ. Before the 1980s, most of us hadn't heard of a condition called nonalcoholic fatty liver disease (NAFLD). Since then, it has morphed into a major health crisis. And last year, a group of scientists officially changed the name of fatty liver disease to address how it can affect our entire system. Doctors now call the condition metabolic dysfunction-associated steatotic liver disease (MASLD). But that's a mouthful.
Regardless of what we call it, many women over age 45 have some level of liver impairment. And the prevalence goes up after menopause. That's a problem, since a clogged and inflamed liver can't perform its metabolic and detox functions. This strain leads to weight gain, fatigue and brain fog, to name a few symptoms.
It's important to remember that the liver does countless jobs for the body, so keeping it in tip-top shape is key. And experts view fatty liver on a spectrum, spanning everything from mild cases that are easily reversible to the worst cases that can lead to liver cirrhosis (scarring), which can be deadly. Those serious cases of fatty liver disease are quickly becoming the #1 reason people need liver transplants.
What's causing fatty liver?Experts have zeroed in on the cause of the fatty liver epidemic. The high sugar content in the standard American diet is a major factor. Robert Lustig, MD, author of Metabolical, says, "Alcohol and sugary soda have the same detrimental effects on our liver."
Related: Princeton Doc: "The Average Woman Unknowingly Consumes 22 Tsp. Of Sugar a Day" — How to Cut Back & Lose Weight
And new research points to another culprit in our food supply: glyphosate, a chemical sprayed on crops to kill weeds. A recent animal study links glyphosate exposure to a three-fold increase in risk of non-alcoholic fatty liver disease. So it seems in addition to pesticides eroding our gut-lining health, they can also damage our liver.
Around 70% of people have glyphosate in their system — that's a 500% rise in the past 23 years, according to a University of California at San Diego study. Though some experts have said it's virtually nontoxic to humans, others urge caution. Says Dr. Berry, "There's no doubt glyphosate is a molecule of concern."
How diet changes can reverse fatty liver diseaseThe good news: Dietary changes can improve liver function in many types of fatty liver disease. In fact, Dr. Lustig thinks diet is the way to go. He explains, "Drugs don't always help. But diet can." (Click through to check out this story about how to cure fatty liver.)
How to know if you have a fatty liverIf you're always tired and have two or more of the symptoms below, exposure to a chemical linked to fatty liver may be to blame. Check with your doctor if you frequently experience any of the symptoms below.
Brain fog
Weakness
Loss of appetite
Weight gain
Blue moods
Nausea
Abdominal pain
Gluten intolerance
Diarrhea
Eye/skin irritation
If you suspect you have fatty liver, your doctor can order a urine test to measure glyphosate levels and an ultrasound to diagnose fatty liver.
Foods that help heal a fatty liverlisegagne/Getty Images
Keto diets eliminate major sources of glyphosate and reverse fatty liver, says Dr. Berry. His advice: Avoid grains and sugar, limit carb intake to 50 grams a day and opt for green veggies, grass-fed meat, plant-based proteins and healthy fats like avocado. These keto-friendly foods help the liver eliminate fat and toxins.
Related: "I Lost 224 Lbs — More Than Half My Size! — With This Keto Hack That Cured My Cravings"
More simple tips that can help:
Related: Dr. Bob Arnot: Swap Your Dark Roast Coffee for a Lighter Roast for Automatic Weight Loss
Fatty liver success story: Christine Trimpe, 51Mary DuPrie Studios
Exhaustion, weight gain, and brain fog kept Christine Trimpe, 51, from living her best life — until she discovered the sneaky culprit and easy remedy that restored her energy in just days. Here, her story...
"For three decades, I lived in a constant state of exhaustion, and my relationship with my husband Rob wasn't the only thing that suffered because of it. I was so overwhelmed with fatigue — physical and emotional — that I couldn't be my best on a daily basis. When my two kids were young, it was so hard to be the mom I wanted to be. I never played in our backyard with them, never went bike riding with them, never bounced on the trampoline.
"They were both active on travel sports teams five days a week, and I struggled to keep up with the commitments. When they had games, it took every bit of effort just to carry my chair, walk to the field and watch them play. I feel like I missed out on their childhood.
"The fatigue also kept me from having friends over. I could barely muster the energy to clean the house for my family, let alone for company! And although I attended church regularly and I really wanted to serve others in need, I didn't even attempt volunteering for anything because I was always too tired.
"Add in the brain fog that made it impossible to focus at work, the sleep apnea that didn't seem to get better despite treatment, and the insomnia that left me wide awake, and I truly felt like I was falling apart.
Signs of a fatty liver"Then things got worse. I started having intense menstrual cramps in my late 40s. I'd been diagnosed with endometriosis as a teen but had a procedure to remove my uterine lining, so it didn't make sense that my symptoms were back.
"I went to my gynecologist for answers, and she ordered abdominal and pelvic ultrasounds. The results shocked me: I had ovarian cysts, but I also had non-alcoholic fatty liver disease.
"My gynecologist suggested we take a wait-and-watch approach and repeat the test in three months. I wasn't sure about that. I did some reading and learned that this is a common approach with ovarian cysts since they can go away on their own. But I knew people who had had fatty liver disease that eventually lead to cirrhosis of the liver, so I didn't want to wait. The diagnosis lit a fire under me. I needed to find out how to reverse fatty liver — fast.
Healing fatty liver on the keto diet"With a little research, I learned that eating healthy fats helps balance blood sugar and 'slim' a fatty liver, so I immediately overhauled the way I ate. I started following a ketogenic diet — low-carb, moderate protein and high-fat. I also focused on healthy, clean sources of protein like eggs, grass-fed beef and chicken, plus healthy fats like avocados, coconut oil and grass-fed butter.
"Next, I learned something that shocked me: Many processed carbs are tainted with glyphosate — an herbicide that may prevent liver enzymes from metabolizing fat. I had never heard of glyphosate, but I wasn't surprised to learn about all the problems it's linked to. I stopped buying packaged processed foods and breads, and also limited grains to lower my exposure to glyphosate and other chemicals. I started only shopping the perimeter of the grocery store, where I could find the healthy whole foods.
Healthy at last!"Within just 30 days, my energy soared, the fog lifted, and I was sleeping better. In six months, the insomnia and apnea were gone, and within a year, I lost 100 pounds! Even better: An ultrasound showed I no longer had fatty liver disease, plus the ovarian cysts were gone. It was hard to believe that simple diet changes helped me completely turn my health around.
"The keto diet was the easiest diet I've ever done and today, it's my lifestyle — one I wish I had discovered years ago. Now that fatigue is no longer running my life, I'm unstoppable. I serve in my church and write my blog — JoyfulKetoLife.Com — to help other women live their best life. I became an author, speaker and weight loss coach. And instead of missing out on the fun, I travel with my family and take special trips with my husband, touring cities like Washington, DC, together. Our marriage has never been better!"
This content is not a substitute for professional medical advice or diagnosis. Always consult your physician before pursuing any treatment plan.
View comments
Comments
Post a Comment