Adhnan never realised the magnitude of the living donor process and found the post-operative pain almost unbearable, but he was determined to give his little boy the new lease of life that he so desperately needed. Thank you so much for sharing your story, Adhnan
My son was born in 2018 with no issues, however routine bloods taken shortly afterwards determined there were complications with his liver function. He was eventually diagnosed with BSEP deficiency. (The bile salt export pump (BSEP) is essential for the generation of bile flow. A BSEP deficiency means bile acid is not able to be transported correctly. Left untreated, it can result in liver failure).
The next few years were difficult. My son was always in pain and just wanted to rest. Due to his medication he would have periods of drowsiness, but was itching continuously, day and night, so wasn’t able to sleep. This meant he was constantly irritated and frustrated. His quality of life took a real hit too, his general well-being, strength in his bones and physical development were hampered. He just wasn’t as active as a normal child his age.
The family struggled to accept his condition. They almost wanted to wish it away because it was difficult to believe something like this could happen to someone so little, until it became very apparent he needed a transplant. We could see how his skin had deteriorated, his face was full of eczema and his eyes a darker consistency of yellow. My son turned three in December of last year (2021) and went onto the transplant list.
Waiting every day for news on a donor liver was emotionally and physically draining
It’s hard to see your child itching and crying through the nights and waiting every day for some news was emotionally and physically draining. I couldn’t watch him suffer so much, so rather than wait for a donor I decided to donate part of my liver to him.
I also did a lot of research and determined the pros of a living donor outweighing the dead donor recipient due to the transmission time of the organ. With a living donor the procedure is planned and there is no time delay between retrieving the organ somewhere else in the country and then transporting it to the transplant centre. It was a personal choice based on my research.
Kings College Hospital in London were amazing in everything they did to help. Initially I never realised the magnitude of the procedure, or really appreciated the level of skill required to carry out such a life-changing surgery. The risks were presented to me, including blood clotting, the risk of bleeding and needing a transfusion, the risk of a hernia post-op or even needing a transplant myself if it went wrong. I also underwent months’ worth of monitoring to ensure I was a fit for the surgery. I had multiple blood tests for four months, an ECG, MRI & CT scan. This required me to lose some weight and change my diet. I increased my physical activity and was very cautious to ensure my health was at its all-time best.
I had to undergo an NHS psychiatric assessment to determine my frame of mind was correct and my intentions were sincere in wanting to donate. On top of this, I had to speak to a psychiatrist outside the NHS to assess that I was mentally fit, understood what I would have done and to determine no influence was being placed on me by the NHS. I was always given full confidence by the team at King’s College that if at any stage I wanted to change my mind, I was able to do so.
I started explaining to my loved ones that I would be donating part of my liver. It was met with a mixed response
When I eventually got the call with a confirmed date, I started to explain to my loved ones, that I was going to have this procedure carried out. It was met with a mixed response, as it’s not anything they’d come across before.
As the date drew closer, I isolated for a week to avoid getting unwell or risking contracting Covid, as a negative test needed to be produced the night before.
I was admitted to hospital separately to my son, it was a Thursday evening and I was ready, praying that everything went well and I could give him a new lease of life. The morning arrived and I was walked down to theatre at around 7am.
I lay on the operating theatre, surrounded by surgeons, nurses and assistants and within 60 seconds I was asleep. The surgery lasted two to three hours and I was awake by 2pm, once the drugs had worn off.
When I woke up I could not feel any pain, and I immediately asked, ‘How did it go? How is my son?’ To which they responded, ‘It went very well, your liver was in perfect condition and your son is currently undergoing surgery now’. At that moment I knew the decision I had made was going to be a positive one.
Later that evening I was advised that my son’s procedure had gone well, it had taken around eight hours. His liver had been eroded, was dark green in colour and they completely removed it. He very much needed the transplant.
I was on the liver intensive care unit where I was cared for amazingly by the staff for 24 hours, before moving onto a shared ward. I had a tube in my nose, a tube in my neck which went into the heart, a catheter and three cannulas across both arms/hands in case one or the other become overused. On top of this, I was very bloated, this was due to the surgery, a tube was fed through my throat and pumped with air to allow everything to come to the surface. As a result of this, I gathered liquid in my lungs and there was a lot of air between my chest and stomach. My voice sounded broken for two weeks.
After the liver donation procedure I found it very difficult to stand up, I felt like I was carrying a ton of bricks in my mid section
I was completely bedbound and stayed in hospital for a week. I had an epidural for pain relief, this stayed on for five days, after this I took codeine and morphine, the catheter also stayed on for the same duration. I was on glucose for a few days and had no appetite at all. It was very difficult to get up, it felt like I was carrying a ton of bricks in my midsection every time.
When I was discharged I found walking was very difficult and the car journey home was not the easiest because I felt every little bump in the road. My son stayed in hospital a further week, he recovered quicker than me but was kept in for observation purposes.
For my first two weeks at home, I could only sleep on my back, with very little movement to the sides. When I was sitting or lying down and then tried to get up it felt like everything was moving with me. Eating was a huge problem for the first 10-14 days, whenever I’d eat, I’d feel discomfort, so I stuck to small portions of soft food.
By the beginning of week five I could manage a lot of normal activities, such as making a drink, walking up the stairs without problems and driving. My appetite was back too and I could sleep as freely as I wanted.
Do not give up on overcoming what seems like unbearable pain. Post transplant my son is as happy as he's ever been
I would say my pain really stopped around week four post-surgery. My scar is a reverse L shape which goes from my chest down to my belly button and is healing as expected.
I feel good in myself, I am trying not to rush back to a fully active lifestyle yet, but feel more than capable of being completely independent.
I’ve been back to the hospital twice for scans and bloods since the surgery and things are looking good. If I would say anything, I would advise anybody who wishes to donate a part of their liver to save a life, to mentally prepare themselves for the post-surgery aspects.
The first few weeks are emotionally and physically draining and you have to be patient with yourself and your body. Do not give up on overcoming what at the time seems unbearable pain and the difficult surroundings of a hospital at night. Just remember the reason you’re doing it and I promise you within a few weeks, you’ll look back and be grateful to the hospital and your family for getting you through it.
Right now, my son is as happy as he’s ever been, he has an appetite to match and his current scans show positive signs for his quality of life. I’m forever grateful to King’s College for everything they’ve done. Gifting the liver is one thing, but the work carried out by the professionals is far greater in making it happen.
The one thing I wish I had during the process was somebody I could speak to prior to the surgery, who’d gone through a similar situation.
If you are a patient or a family member affected by liver disease or liver cancer, we have information and support available to you, including a nurse-led helpline and online community and support groups. Find out more here.
Adhnan has very kindly offered to reach out to anyone in a similar situation. If you would like to speak to him to him, please contact us.