transplant week 2011

Donna Barrington-Smith

Meet Donna, she was shocked to find that she needed a liver transplant, having been completely healthy until 2006

Arriving at East Surrey A&E in November 2006, I was immediately taken through and bloods taken. I spent about 10 days in East Surrey during which time my stomach started to swell and my yellowness (jaundice) deepened.  The swollen stomach was caused by ascities, a build up of fluid around the abdomen, and a condition very commonly linked with liver diseases.

On about day 7 or 8 in East Surrey and having undergone various scans and tests, two doctors told me I’d be moved to the liver and renal unit within the hospital.  Within 24 hours of arriving in East Surrey Liver and Renal Unit, I was told I was to be transferred to King’s College Hospital in Denmark Hill, central London.

I’d never had liver problems so it was a total shock, when following a transjugular liver biopsy (a normal liver biopsy was too dangerous as my blood wasn’t clotting properly), I was diagnosed with Auto Immune Hepatitis or AIH.

I have to stress like almost all liver diseases this was not a self inflicted disease but just from the querks of life, was a genetic (not hereditary) defect. This was the first time LIVER TRANSPLANT was mentioned, but at this stage whilst my bloods weren’t quite stabilising, the discussion of transplantation was discussed as a possibility in maybe ten years time. 

Whilst my mind was positive – yes it was a shock – but life has to go on – my body had other ideas, and I had an encephalopatic episode. I remember going to sleep on Thursday and when I woke up I had a catheter in. Everyone was asleep, I found my mobile phone and struggled for about 10 minutes trying to remember how it worked! I love technology – this was very disconcerting! Ringing my partner (Stav), I heard a great big sigh on the end of the phone “It’s really good to hear you. Did you know it’s 4.30am?” The toxins had gone to my brain. I had “woken up” on Saturday.

Christmas was only days away and all I wanted to do was to go home. We’d been due to go to my mum’s in Lancashire but if I was allowed, it would have to be Christmas in Surrey instead. The doctors were reluctant to raise my hopes too much. It wasn’t until Christmas Day morning that they decided I could go home just for the day. Stav and the kids drove me home and I was greeted by a magnificent Christmas tree and the gorgeous smell of roasting turkey. Although for me, the day was spent on the sofa, it was still a lovely day which I’ll always remember.

I woke up on Boxing Day 2006 very tired but euphoric! Maybe around tea time, my registrar came to visit and told us that I needed an urgent liver transplant. Someone really was looking after me because within hours the registrar returned to tell us that they had a 50-50 match.

That very same night, I wrote a note to the children in my journal and I texted my closest friends to let them know that I was to have the operation the next morning (27^th December). Stav had contacted my family and they were all exceedingly concerned but accepted the information.

Stav and I cried and we chatted. My memories otherwise are not too clear, except I felt that I was way too young to die. I had so much I wanted to tell the children. Knowledge I wanted to impart. At 11 and 13 they wouldn’t appreciate it now but I just had to make sure that if I didn’t wake up, I at least left them some reminder of me.

Now I know I was on the Super Urgent Liver Transplant list. Only three cases in the country are allowed on it at any one time and you are only put on it if the doctors think you have between 24-72 hours to live and if you haven’t been on a transplant list before. I remember the anaesthetist coming in with a crowd of doctors, nurses and transplant co-ordinators at around 5am the next day and asking how I felt about having the transplant. I punched my fist in the air and said “let’s go for it”!

Stav and I said goodbye. I was asleep.

Looking back, the events were quite hazy. My family rallied round me to make sure I had everything I needed but my concern was that my young children had as good a Christmas as possible and weren’t inconvenienced by my absence. This is where my friends were worth more than their weight in gold helping out - taking the kids for sleep over’s and to athletics training for example. Stav stocked up my hospital cabinet with the foods and drinks I needed. One day I was diabetic, another I wasn’t allowed salt, a diet that changed depending on what my liver decided. He washed my clothes, bought me new sets of pyjamas and loved our children whilst I couldn’t be at home to do it myself. In turn his work supported him, allowing him time off to visit me. I may have been the sick person, but my illness definitely affected many more people.

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