I Don't Even Know What I Have Been Through

The surgery was said to take around 6-8 hours, I woke up on Sunday morning/afternoon after just under 5 hours. I have little memory of when I came out. Friends and family have given me different accounts of the day I came out of surgery. From the operating theatre, I was brought to the intensive care unit. Only two people were allowed to visit at a time. My family who accompanied me to the hospital the previous day had stayed at the hospital all night whilst the surgery was going on. I was so out of it from the drugs they had given me, that all day I was in and out of sleep. I remember opening my eyes at times and seeing and recognising certain people. I remember having a moment when I opened my eyes and saw my ex-girlfriend I smiled as I didn’t expect her to be there. Every person I saw I was appreciative of the time they had given up for me. Now knowing that I had so many people waiting with me in the hospital whilst the surgery went on makes me feel emotional, its difficult to describe how you feel when you have the support of loved ones, the love I felt could only be described as love so overwhelming that I feel I can never payback. I can’t begin to write how appreciative I am for everyone.

On that same Sunday in the evening, I was moved from the ICU to a different ward Liver Intensive Therapy Unit (LITU) on this ward the rehabilitation process would begin. On Monday I was more active I could now notice what was going on a bit more. I was still tired and spent most of the day sleeping but I was able to communicate and speak with any nurses and visitors I had.

At this time I hadn’t eaten anything since Saturday evening it was now Monday and the nurses came and told me that I would be needing to drink liquids only for the rest of the week. I’m usually not a happy person when I’m hungry anyway but telling me I can’t eat when I’m hungry made me mad, Inside I was definitely very moody, but so pleased that the surgery was successful and I could get on with being healthy.

Coming onto this new ward I had the mentality that I was gonna be out of this hospital as quickly as possible, I want to head out start driving, meet friends, go on holidays. The consultants quickly came and knocked me down from my high. They explained that things wouldn’t be the same for me for a while. I was put on Immunosuppression tablets, steroids (using this as an excuse as to why I couldn’t become a professional footballer), I was taking antiviral tablets and medicines to control Ulcerative Colitis. I was on a lot of medication. They informed me that the immunosuppression medication completely lowers the immune system to allow the liver to settle in and ‘get familiar’ with my body. I use the example of maybe getting being in a relationship. You start off chatting to each other seeing if you are compatible, it works sometimes and other times it doesn’t, but if your willing to try and put in work things can work out.

It became very clear to me in that conversation that things weren't going to be as simple as I thought, meeting with friends in the places I would usually meet wouldn’t be allowed, I couldn’t drive for a long while, they were talking to me about changing my diet < till this day I still don’t know what this means. All jokes aside I could see things weren’t going to be the same.

I tried hard to put on a brave face around friends and family I passed off and downplayed how I felt most of the time. I didn’t want to come off and seem ungrateful for what I had gone through but every second I still questioned: “Why Me?” I felt I was missing out on so much, all I could think about was work, worrying about things going on there feeling more useless. Thinking about how my friends and family felt not wanting them to worry about me feeling like a burden as people would come from far to visit me, thinking how much of an inconvenience I was and what I was causing. Even the nurses in some situations where I was feeling pain but I would just try and handle it because I didn’t want to bother anyone.

Whilst in the LITU, I progressed quite quickly from coming out of surgery on Sunday I was up and walking on Tuesday although it was short distances the progress I was making was significant. Another day went by it was Wednesday, I was moved to another room on the ward which was more private and meant progress as I no longer needed to be on 24-hour supervision. They had taken most of the needles and stuff they had inserted into me. And they stopped giving me the strongest painkillers.

I have quite a high pain threshold but there was one evening where the pain was unbearable for me, I had two tubes coming from my stomach, they were collecting excess blood and other fluids in the stomach area, I was laying in the bed trying to find a position that I could lay in that didn’t feel uncomfortable but also didn’t hurt, I tried for most of the day taking on the pain with the painkillers they gave me but nothing was working, they agreed that it was ok to take them out, I was so pleased. I waited and waited as the nurse who was supposed to take them out was also working with other patients. My mum came into the room for her daily visit, she could see from when she arrived I was in pain. I became irritated, I could sense that I was getting angrier as time went on and the pain was just still there, but I was still trying to not be an inconvenience. I couldn’t take the pain anymore and call for the nurse to come and take it out. I felt I was fighting two battles being the pain and as my mum was there I was trying to remain respectful because around friends I swear a lot and that pain I wanted to scream a few different words to try and release the anger I was holding form the pain. They finally came and removed the tubes, which hurt and felt weird but not having to deal with the pains that night was such a relief.

My recovery from then started to slow down, I was less motivated to do anything, I began to become idle and stayed in my bed and room for most of the time. I had a laptop and phone but I was so bored, I was having trouble sleeping and became more frustrated as the days went on. Knowing that it was soon Christmas made things worse I wanted to get people presents but couldn’t. I wanted to go back to work, all these things that a week prior that I had in my plans were just gone, I was now stuck in a box room with little contact with people.

I've been in the hospital a few times and the first few days are usually ok for me, but I always get to a point where I just want to go home, so when I was told I would be in for a minimum of two 2 weeks I was excited when the discharge date was close, I was planning to be home and spend Christmas with my family. The discharge date was set for Friday 20th December. When the day came I couldn’t wait to come out, however to my surprise the consultants had come and given me some news that the new liver was rejecting and my immune system was fighting the liver as it was foreign to me. I would be needing to stay in to start some different treatments to lower my immune system more to allow the liver more time to adapt and get used to my body. (I was at the point in the relationship where you might have differences with each other better you want to work through them for the relationship to work out.)

I underwent some blood tests and a biopsy that showed rejection in the liver, I was stuck there for another week or two whilst I underwent this new treatment. I was told I would have to take high doses of steroids and then after they would review, which they did and they didn’t see much improvement. They went on to start another treatment with a higher dose of immunosuppression medication called ATG that they advised would be needed to be taken once a day a dose that would be administered intravenously over 12 hours for a maximum of 10 days, it depended on how progress was going. It was usually done when I was supposed to go to sleep, the first three days of the mediation was like any other medication I had but, after each dose would be to be painful, the drug was so potent that it was too strong for my veins, it started to collapse the linings of my veins, again I tried to manage the pain as much as I could but often I would need a new cannula inserted. I couldn’t sleep most nights I would mostly sleep during the day.

It was difficult to go day to day knowing that I had to go another night through the pain that I was feeling, my solace was knowing that I had people coming to see me all the time, I had an amazing support group and I honestly think if it wasn’t for peoples different inputs I wouldn’t have come out of it the way I did, company from my mum watching series on Netflix when she came to visit, laughing and joking with family members when they came, encouraging messages and visits from friends. Sometimes just meaningless chit chat from people helped keep me sane.

The care from the nurses was so amazing as well the healthcare assistants that often looked after me were the same people throughout my stay in hospital so I built different relationships with them they always checked up on my mental health as well as my physical health. I kept thinking about the people in my life that supported me it gave me a reason to continue to fight and get back to being as healthy as I could be. Before the surgery, I just went day to day living but not feeling like I had a purpose, but having gone through so much I started to plan things that I never had aspirations for I started to be happy again and looked forward to my future.

Thank you for reading, come back on Friday to read the next post.

Love & Guidance
Keiran x