If I Could Change Anything I Would Change Everything!

The hardest thing about going through such challenges is feeling like you are alone in the world. I had all the sympathy and support from friends and family but no one knew what I was going through. Knowing and hearing from people who had the same or similar conditions helped me to get through certain situations. It gave me such a relief when talking to someone who was going through the same thing because they knew what I was going through, they could relate in a way that others couldn’t.

The Ulcerative Colitis was under control, the liver conditions would flare up sometimes I was admitted into hospital when this happened whilst they were able to get it controlled through medication. Symptoms of liver disease now became more tangible. My eyes were visibly yellow all the time my skin was bad, ashy and dark. At all times I had an unbearable itch. Sleeping became a luxury because I would wake myself up itching myself. Bed sheets would often have bloodstains on them from itching so bad I would draw blood from my skin.

Although all these things were going on I was still trying to get on with everything I possibly could, I was now a supervisor in the place I worked, my relationship was going well I would meet with friends as much as I could. I was happy despite the trouble the symptoms were causing me.

I had a few procedures in the hospital to try and find an ultimate solution to the liver disease. The procedure was an ERCP that was to try and widen ducts in the liver that carry waste and toxins that are extracted from the blood that flows through the liver.

In June 2019 I traveled to Turkey with my mum and partner at the time. I enjoyed it so much traveling is a passion of mine and the trip there was great as it was somewhere I hadn’t been to yet. But returning from there everything changed.

Returning from Turkey I had a hospital consultation appointment where we found out the procedure did not make much of a difference. The consultant continued to speak and talk about perhaps changing the medication I was on, they then went on to mention that if there was no change after trying new medication dosages it would be on the table to think about having a Liver Transplant.

I zoned out. After several years of dealing with this disease, this had never been mentioned. I remember speaking to my older brother at the beginning stages of the illness when trying to make sense of what was going on we spoke about what we thought the worst thing that would happen to have this disease. I said, “ I don’t think I can die from it if anything the worst thing would be my liver shutting down and having a transplant.” Well, now the worst thing that could happen was being mentioned.

I don’t think I took in any information that day, I was with my mum and she confesses she didn’t take in much either we were both shocked, I knew things were bad but not that bad I felt numb so many different thoughts running through my mind.

Everyone that I told didn’t understand. People who saw me in person or on social media thought everything was fine, I just always continued to get on with my life, I wasn’t trying to let the disease stop me from doing anything.

From the appointment, we were completely bewildered. We had phoned my brother and invited him to go to a restaurant to eat, we picked him up from his house to go to a restaurant, on the way there my mum asked me to tell him the news. I started telling him but just broke down in the back of the car. I was just so mad that it had come to this point, there was nothing that I could do, I couldn’t control what was going on.

Days and weeks had gone on, I continued to work, go to appointments there was still no change but symptoms remained and were getting worse. The consultants made the decision that I should go through the process of learning about the transplant and then going on the waiting list for the organ.

I spent a month doing different tests for Ulcerative colitis and more in-depth scans of my liver. September 9th 2019 I went to the hospital to take educational session it was like two days of learning about pros and cons of a liver transplant, giving information of the procedure, meeting different health professionals people that would be involved in the whole journey. The surgeons, anaesthetist, dieticians, transplant coordinators, and social worker.

The whole process was informative but very overwhelming I had support from family members, I spent the first day doing lots of different tests to check my fitness and make sure I was well enough physically to be put on the organ list. When the two days had finished all the health professions came together for a multidisciplinary meeting to decide whether or not I would benefit from having a transplant. A few days later I received a call to which they decided that I would be put on the transplant list.

This wasn’t a shook but still crazy to think what was going on, the next stage was to attend a day of understanding the process of a transplant, going every detail, learning about the liver in detail trying to understand why this may have been happening. I saw images of a healthy liver and the liver that may have been similar to mine. Learning symptoms that may arise whilst on the waiting list for a new liver. Understanding where a new liver may come from knowing that a new liver would be coming from a deceased person. The whole session was so enlightening.

There was a moment when the coordinator brought out a bag full of ‘lines’ that would be coming out of me, cannulas from my hands, breathing apparatus from my nose, lines coming from my neck. When he started to explain these things I lost all interest I zoned out and just looked outside the door that was next to me I stared at the sky, I was just worried about all my loved ones seeing me with all these things coming out me.

It was difficult to understand the magnitude of what was going on, I was trying hard to take in the information that was needed, I received information packs that I read and studied. After leaving the session I was formally put on the liver transplant list, the average time for an organ to come for an Adult was 135 days. I was told to go on with my everyday life but that I could expect a call any day at any time.

The journey of going through everything had lead to this point, I questioned all my decisions in the past, I felt so many different emotions every day there was something different. I barely told anyone what I was going through. Those who did know supported where they could but truly I felt alone. I tried to block what was going on out, I started going out more I was barely at home, weekends I spent in clubs with friends or at peoples homes, I worked as much as I could I just didn’t want to feel alone.


I hope you enjoyed this blog I will continue with the next post this coming Friday 24th April.

Love & Guidance

Keiran x