Arun was born with a very rare genetic condition that affected his liver and had his first transplant when he was just eight years old. In 2020 his donor liver began to fail and he received his second liver just before lockdown. Unfortunately Arun contracted Covid during his recovery in hospital, leading to a loss of mobility, months of excruciating pain and a brave battle to regain his health and walk again. Thank you for sharing your story, Arun
It’s five years since my second liver transplant in February 2020 and I’m sharing my story because I want to spread awareness of organ donation and commemorate my donors. They’ve saved my life twice and given me a great quality of life. I also want to thank my parents for everything they’ve done. They went through so much and it hasn’t been easy for them.
My brother and I were born with a rare genetic deficiency called MDR3 which predominantly affects the liver. To have two children with it in one family is very unusual too. The lack of immunity meant we became ill very easily and as well as having jaundice, rickets and fatigue, we also bruised easily, had frequent nosebleeds and difficulty in gaining weight and growing.
I had a lot of time off in my first year of school, and even though I had regular hospital appointments, I still managed to get quite ill before I had my transplant. I vomited a blood clot, was taken into hospital and it escalated from there. After the transplant I remember waking up and craving cereal, but not being able to eat. I don’t remember much about my recovery, but my parents and the hospital did their best to make it fine for me and now the MDR3 had gone, I could do the normal stuff that other kids did. My hospital appointments became few and far between and I went to university and was then employed by the ambulance service.
Thanks to the leaflets and other literature about MDR3 that it provided The Children’s Liver Disease Foundation became really close to my family’s heart. We’ve donated to them and still buy our Christmas cards from them!
Emergency liver transplant
In 2016 my brother’s transplanted liver had reached the end of its life and he had a second transplant aged 29. I was conscious the same could happen to me and stayed on top of my medication and watched out for symptoms. When I was 28 I got a cold that never went away and gradually started getting jaundiced and bruising easily. I was added to the transplant list in August 2019.
The symptoms developed gradually at first, but I had a rapid decline towards the end. My blood sugar was erratic and I also had fatigue, loss of appetite, muscle wastage and swollen ankles. I had to stop working and go on long-term sick. When I became delirious my mum took me to A&E where they found I’d suffered a major internal bleed and my blood pressure was really low. I don’t remember much of what happened next but was later told that I was transferred to King’s College and had emergency surgery to stop the bleed. I was then put into an induced coma in intensive care and placed on the emergency liver transplant list.
I didn’t know where I was and what was going on when I woke up after the transplant. It had taken place mid February 2020, but I didn’t come round till the end of the month and was in intensive care for all that time. My parents visited me every day and my brother came when he could, but it was difficult for him with his compromised immunity. Then in March we went into lockdown.
My new liver was doing well and my medical team were really looking after me, but Covid was new for them
I had lost my mobility prior to the transplant but had been recovering quite well post-transplant and took my first steps on April 2nd. Then I caught Covid and was moved to a quarantine ward. I didn’t really have Covid symptoms, but my whole body ached and I lost my mobility again. The liver doctors would come and see me in what looked like full astronaut gear and look at me through a screen. 
I trialled an early covid medication called Remdesivir which I don’t think helped me, but did help others avoid hospital admission. It was all quite surreal, but even so, I had a great time. Because we couldn’t have visitors, I only had the hospital regulatory wash products so the little hamper that Boots gave patients with body care stuff, was nice.
My new liver was doing well and my medical team were really looking after me, but Covid was new for them. I came home in July, but still wasn’t mobile, very weak and in a lot of pain. I think the pain was caused by nerve damage because I had been lying down for so long. It was everywhere, but worse in my thigh and I couldn’t stand up. I could only be lifted out of bed with a hoist and went to my hospital appointments in an ambulance.
I cried every day because it was so bad and thought I would be bedbound forever. Three months after my discharge my consultant looked at me and said: ‘This isn’t right’ and I was taken back into hospital and seen by the pain management team. They put me on some great painkillers and when I got home a month later, I was finally able to get out of bed on my own and sit up. I started walking again in October and we got rid of the hospital bed downstairs and things got better from there. I got stronger every day and five years later I’m doing really well. Maybe one day I’ll wake up and be pain free and won’t need the medication, but I don’t know.
Become a donor
It took me two years to get back to work and my employer supported me throughout the whole process. I did a phased return and worked from home at first, then returned to the office in 2022. I met my fiancée as I was getting ill, then lost contact with her, but as soon as I was moved out of ITU I got my mum to help me text her which was a bit awkward as my mum didn’t know who she was! It would have been so easy to be obsessed with the pain, but my fiancée opened up a whole new world for me and we’ve explored a lot of places and done wonderful things that I would never have experienced otherwise. I’m reviewed every six months now and my medical team are happy. I keep up with my medication and look after myself, I know my limits and don’t push myself too hard. 
Both my donors gave me the gift of life and have had such a big influence on my life, but I’ll never get to meet them or thank them. I would ask everyone to look into organ donation and if there’s a reason why you don’t want to be a donor, try to find an answer to that. Everyone will take an organ if they need it, but if the conversation about being a donor isn’t had in time with loved ones, there’s not a lot that can be done.
I hope my story makes people think and if anyone decides to donate an organ on the back of reading it, that’s an achievement.
