Catriona's story: my experience of life-altering complications

The moment I was diagnosed with diabetes was both confusing and overwhelming. I was 15 years old, and, like any teenager, my mind was preoccupied with school, friends, and the typical challenges of adolescence. I remember sitting in a hospital room with my mum and meeting with a doctor who explained that I had diabetes and would need to take insulin injections multiple times a day for the rest of my life. I didn’t understand exactly what diabetes was.

"It felt surreal, like something that wasn’t really happening to me. I had other things on my mind, and what the diagnosis meant didn’t sink in at the time."

In the days following the diagnosis, specialist nurses visited my rural home daily to ensure I was managing my sugar levels and insulin injections. Despite their efforts, I still didn’t understand the full picture. I didn’t realise that insulin was meant to balance my sugar levels or that those levels had to stay within a specific range. I simply followed instructions without a true understanding of what was happening inside my body.

It took me years to understand just how serious diabetes is. Looking back, there were clear signs that something was wrong even before my diagnosis. I had a viral infection months earlier, and in the summer leading up to my diagnosis, I lost a lot of weight, was constantly thirsty, and experienced muscle cramps, especially after dancing. However, as a teenager, the weight loss seemed like a positive change, and I didn’t think much about my other symptoms. My focus was on school exams, friends, and, at the time, getting my first mobile phone, not on the fact that I was developing a condition that, if not managed well, could lead to complications.

The seriousness of diabetes became more apparent later in life.

While I was at university, and for a number of years while I was working overseas, because I had new things going on, I fell away from managing my diabetes. I started having hospital admissions for diabetic ketoacidosis (DKA) and in 2011, when I was 26 years old, my kidney function started deteriorating. I developed swollen ankles and feet, and was constantly tired, which are early signs of kidney disease. It was only after speaking with a renal consultant that the seriousness of my condition really hit me.

In 2013, when I was 28 years old, I was told that I had developed late-stage kidney disease and that my kidneys were failing, and that I needed to consider treatment options of dialysis or a kidney transplant. My kidney function had deteriorated dramatically. In just two years, my eGFR, which measures kidney function, dropped from 40% to less than 10%. It was a steep decline that reflected years of not paying enough attention to my diabetes. In October of 2013, I found myself on the list for a kidney and pancreas transplant.

Diabetes also began to affect my vision. I underwent laser surgery multiple times to prevent blindness, a consequence of high blood sugar levels damaging the blood vessels in my eyes. I also developed foot ulcers that were slow to heal because of high blood sugar for a prolonged period of time.

In December 2015, I received a kidney and pancreas transplant, a surgery that would dramatically improve my life but that was also full of emotional highs and lows. I felt relieved that I was finally getting the care I needed, but there was also fear. Transplant surgery is a massive procedure, and lying on that hospital bed, I had to come to terms with the fact that I might not wake up.

After the surgery, the transformation in my physical health was incredible. For the first time in years, I had energy. I could walk miles and felt alive again. But it wasn't without its complications. Just eight weeks post-transplant, I developed a bowel obstruction that required further surgery. There were also countless adjustments – drinking 10 litres of water a day, adapting to life without insulin but with a new set of medications, and coping with frequent urinary tract infections due to my immunosuppressed state.

It's important for anyone considering or awaiting a transplant to understand that it’s not an easy fix. Transplantation comes with lifelong consequences – from medication management to lifestyle adjustments. You don’t just get to stop worrying about your health afterward; it’s a new chapter of challenges.

Stigma

"Living with diabetes has often made me feel isolated and self-conscious. From the beginning, there was a stigma attached to managing it publicly. I remember feeling embarrassed when I had to take insulin in front of others, whether in a restaurant or at work."

At one point, my colleagues reported me to management because they didn’t want to see me administering my insulin. I was told to do it in the bathroom, which only heightened my sense of shame. It was an uncomfortable reminder that, even though I was just trying to stay alive and manage my condition, it made others feel uneasy.

The stigma wasn’t just at work. I carried that anxiety into social situations, especially during my school years. There was another girl my age with diabetes, but she was in the ‘cool’ group, and I didn’t feel comfortable approaching her to talk about our shared experience. I didn’t want to be seen as ‘different’ or ‘weak’. This mindset followed me into adulthood, where, despite all the medical knowledge I had access to, I still felt hesitant to openly talk about or show my diabetes management in public spaces.

Managing diabetes with technology

Managing diabetes, especially during those early years, was a struggle. I didn’t fully understand how to adjust my insulin doses based on what I ate. It wasn’t until I took a carbohydrate counting course that I finally began to understand the relationship between food and insulin. By then, I had already been living with diabetes for over a decade, and damage had been done.

When I was 29, I was finally given an insulin pump, which was a game changer for me. Paired with a continuous glucose monitor (CGM), I was finally able to better manage my blood sugar levels. The technology made it easier to live with diabetes, but I still had to confront the years of not managing my diabetes well that led to complications like neuropathy in my hands and kidney failure. The pump and CGM helped, but they came too late to prevent damage caused by years of inconsistent management.

Prior to my transplant, there were points where I was running on empty, barely able to make it through the day. I don't even know how I managed to hold down a full-time job while my kidney function plummeted. I remember coming home from work, making dinner, and going straight to bed. I had no life outside of work, and my weekends were spent resting just to survive the next week. But somehow, through all that exhaustion, I kept going.

Resilience played a huge role in this. The one thing that kept me going was focusing on what I could control. While my diabetes management had faltered, once I was faced with the reality of a transplant, I knew I had to focus on staying strong and positive. I couldn't afford to fall apart emotionally, so I just took it one step at a time.

That mindset is something I've carried with me post-transplant. I have to take multiple medications daily, deal with an increased risk of infection, and live with the fact that my immune system is suppressed. But I try to stay focused on the positives. I'm alive. I'm healthier than I was before, and I’ve gained a second chance.

The emotional journey

The emotional side of the transplant was just as significant as the physical. I remember lying in the hospital next to a fellow patient who didn't make it through their surgery. The person across from me had been dealing with transplant complications for years. It was a stark reminder that while my outcome had been positive, not everyone is so lucky.

On top of that, I felt an immense responsibility toward my donor. My donor saved my life, and I felt that I owed it to her and her family to make the most of this second chance. This sense of gratitude and accountability helps me stay focused, especially on difficult days when the thought of taking more medication feels overwhelming.

"I’m also in touch with my donor’s family, and they have become like extended family to me. My donor, Sally, lost her life to meningitis, but in the wake of that tragedy, she saved five lives. That’s a powerful reminder of the beauty of organ donation, and it gives me even more reason to live fully and healthily in her memory."

In retrospect, managing diabetes is not just about insulin and diet; it’s about understanding the full scope of the condition and taking proactive steps to protect your long-term health. For years, I underestimated how serious it was and avoided confronting the reality of living with diabetes. The journey has been long, and while the technology and medical care I now receive have drastically improved my quality of life, I still deal with the consequences of those early years of not managing the condition well.

The lesson here is clear: diabetes doesn't take a back seat. It is relentless and unforgiving if left unchecked. Looking back, I realise that managing your diabetes well isn't just about avoiding minor inconveniences. It can literally save your life and prevent irreversible damage to your organs. If you're living with diabetes, it's essential to stay vigilant because once you hit that point of no return, like I did, there’s no easy way out.

Life after my transplant

Nine years after my transplant, I’m living a full life, raising my five-year-old son who is my motivation to keep going, to stay healthy, and to honour the gift of life that my donor gave me.

Having gone through so much, I now want to share my story with others. Diabetes is a relentless condition, and my journey proves just how serious the consequences can be. I hope that by raising awareness, particularly among young people, I can help someone else avoid going through what I’ve experienced.

Every day is a new chance, and I’m determined to keep living fully – for myself, for my son, and for Sally.