When Noele began to lose weight and her skin gradually became darker, she didn’t realise that her liver was struggling and never thought she would spend nearly a month in hospital and be diagnosed with autoimmune hepatitis. Thank you for sharing your story, Noele.
For as long as I can remember, I led an active and healthy lifestyle. I ate well, worked out and, of course, enjoyed socialising with family and friends over some cocktails. I felt like I was in my prime, but everything changed unexpectedly in November 2021.
I began feeling unwell, with extreme fatigue setting in over the following months. At first, I dismissed it as exhaustion. At one point, I even thought my issues might be related to red meat or tap water. My energy drained away, and I noticed I was losing weight, even though I wasn’t going to the gym. Oddly, I wasn’t concerned — I was still indulging in chocolate, thinking “happy days” because I wasn’t gaining weight. What I didn’t realise was that something far more serious was happening. My skin was becoming noticeably darker, which I mistook for a tan. Little did I know, it wasn’t a healthy glow — it was jaundice, a clear sign that my liver was struggling.
Initially, I thought I just had a bug. Never in my wildest dreams did I think my health would spiral as it did. Then one morning, I woke up, with my skin completely jaundiced and yellow eyes. That’s when I knew something was seriously wrong. I was admitted to the hospital, where blood tests revealed extremely elevated ALT levels (almost 2000) confirming significant liver damage. To make things worse, this all happened in the middle of a house renovation. Feeling dreadful and having to move out of our home at that time was anything but ideal.
My hospital stay turned out to be extensive and full of treatments. I had 10 IV drips, three side biopsies, one transjugular biopsy, three ultrasounds, one MRI, and one endoscopy. Altogether, I spent 29 nights in the hospital, enduring multiple medications and procedures. I was shocked by how many biopsies were required to confirm the autoimmune hepatitis diagnosis. I couldn’t help but joke that the hepatologists must have had a special interest in a classic Irish liver! (I’m Irish by the way!) Due to COVID restrictions, visitors were not permitted at the time, except for a brief couple of hours on Christmas Day. Even when I was discharged, it wasn’t long before the phone rang, and I was told to come back — my medications weren’t working, and I needed to be admitted again.
The specialists acknowledged that while steroids were keeping me alive, they have numerous side effects
During this time, I was placed on prednisolone, which gave me the dreaded ‘moon face.’ I got married while feeling unwell, and I have to admit, it’s hard for me to look at my wedding photos because of how different I looked and felt. The steroids caused hyperactivity, leaving me with many sleepless nights. I endured persistent nausea for 20 months, and for three of those months, it became so severe that I rapidly lost 5kg. The specialists acknowledged that while steroids were keeping me alive, they have numerous side effects. Azathioprine, another medication I was prescribed, caused toxic side effects which I was advised to stop immediately as my body could not tolerate it. I experienced tremors, hair loss, irritability, severe headaches, forgetfulness, and an overwhelming sense of discomfort.
After three challenging years, I’ve finally reached a stable condition. I’m now off steroids and the nausea gradually subsided, but I still remain on a high dose of tacrolimus to manage my autoimmune hepatitis. While it keeps me alive, it often leaves me with severe headaches and more often than not my head has this ‘fuzziness’. Despite the progress I’ve made, fatigue is still a constant companion. I work full time and my weekends are dedicated to recovering as much as possible before starting the cycle all over again the next week. It’s an ongoing battle, but I do my best not to let this condition take over my life.
I am deeply grateful to my husband, family, and friends for their unwavering support through the toughest days and for continuing to stand by my side every day.
Living with autoimmune hepatitis has its challenges. While people often tell me I look well, there are times when, beneath the surface, I don’t feel my best. Still, I refuse to let it stop me from achieving my goals. I won’t let it define me or make me feel like I can’t keep moving forward. Whatever your goal is, taking small steps will get you there eventually.
