loader

Sophia W

02/16/2018

I was born with Cloacal Malformation (Cloacal Anomaly/Persistent Cloaca), a congenital condition that affects 1 in 25,000 female births where the urinary, digestive and reproductive systems share the same channel. They often have one common exit or none at all. This causes fluid and toxic waste to build up in the abdomen, damaging tissues and organs. From the day I was born I underwent vast amounts of surgery just to survive. I eventually had reconstructive surgery, various ostomies and we also knew that I had kidney disease and would one day need a transplant.

As a child I knew I had poorly kidneys and needed to put a catheter into my tummy to pee. My school friends just accepted it. I did everything they did, kicked ass if anyone tried to bully me and had an almost normal childhood. I was blissfully ignorant of my underlying health issues or what it might mean for my future.

At 12, my Dad donated a kidney to me. It meant taking tablets for a lifetime to prevent my immune system from attacking the new kidney. Unfortunately, a lowered immune system made me more susceptible to infections. This coupled with the fact that I can only wee when I put a plastic tube into my abdomen, means that I am constantly introducing bacteria to my bladder, no matter how careful I am. I had back to back infections for the first 2 years and missed 50% of school. On reflection, I think this is where my depression and anxiety started.

Throughout my time at college I found it difficult to make friends or mix with groups. The infections were still an issue, so I used this as an excuse not to go. I’d take strong pain killers so that I would sleep and not think about how I felt. Eventually I relied on them daily. After being off for long periods I’d return to college, have an anxiety attack at the entrance and go home again. I hated myself. I felt like I didn’t have any friends or anyone to talk to that would understand. Some days I really thought that I’d be better off dead. I was just sick of fighting, on what felt like, every front. This routine carried on for the 5 years I was at college. I eventually found a course I loved with tutors that supported me. And in 2013, 2 months after more major surgery, I went to university to study veterinary nursing.

After almost 10 years my transplant was beginning to fail due to the number of infections I’d had. My second year at uni was a year-long placement and I gradually became more and more run down and tired. I’d noticed parts of my body swelling due to the excess fluid that my kidney was unable to remove. Eventually I reduced my hours to the point where I was barely attending placement at all. This was a really low point for me. I felt like my entire life was one battle after another, whether it be due to mental or physical health, education or employment issues – the list felt endless. Nothing seemed straight forward as a result of my health issues. I remember having a very happy childhood, my health was never an issue to me. I never gave it a second thought. Trying to be an adult and fit into society whilst dealing with chronic illness is HARD.

In 2015 my Mum donated a kidney to me and I attended my first Climbing Out programme. My life and my outlook flipped 180 degrees. I was finally living again, not just existing. My confidence improved and I had hope for the future. Over the last 3 years I’ve had to have my first transplant removed as it became massively infected. I still have issues with infections which are now resistant to most antibiotics. I’m now facing the possibility of further radical bladder surgery and I still struggle with anxiety and depression. Yes, it’s shit but I’ve accepted that all of this is part of my story and I wouldn’t be who I am now if it wasn’t for the difficulties I’ve faced and overcome. I’m lucky to still be here riding the wave. I know that whatever my future holds, I have within me whatever it’s going to take to face each obstacle, one day or minute at a time, no matter what the outcome. It might sound cliché but that’s the way I feel. I have to look at it this way to keep going sometimes.

Sophia. x

Tags: Kidney/Liver Disease,

Support Networks

Finding the right information and support for you can be confusing. We're here to help.

{{ n.networkName }}

{{ cygLimit(n.networkSummary, 100) }}

Read More
loader

Additional Stories

Here are some additional stories that you might be interested in.

Raising Hope - Raising Awareness - Raising Funds