Long Read: Deborah’s Story
I was told I had six months to live if I didn’t make changes
I began to feel unwell during the run up to my wedding. I had been very tired, put a lot of weight on, always felt sick and vomiting. My partner Alan and I had no idea what was wrong with me and just put it down to a build up of stress. I had seen a few GPs and told them about my discomfort, and most said I had classic signs of Irritable Bowel Syndrome.
Our wedding day: I had no idea how ill I was
A few weeks after we were married Alan spotted my eyes changing to yellow, and he rang 111 to ask for advice. They advised him to get me to our local walk in centre asap.
I was taken into Sunderland Royal Hospital and given a cocktail of medications straight away. Within one hour I was on a ward. I had to stay in a room by myself on my first night in hospital which-I hated. I didn’t know what was going on, whereabouts in the hospital I was, and I was totally confused. I didn’t like the ward I was taken to after that night but the staff were amazing and did anything for me to make sure I was comfortable. I had a bad reaction to all the meds I had pumped in to me and I had a massive seizure. I dislocated my shoulder, lost some teeth from hitting the floor so hard and was badly bruised from head to toe.
Next day I was given the diagnosis. As soon as the doctor pulled the curtain around my bed I knew it wasn’t good news I would be getting. He told me I had liver disease and would need a scan to check for cirrhosis. I was taken straight to radiology for an ultrasound scan on my liver. I cried my eyes out with the pain. Within a few hours the results were back and again the doctor came to see me with another doctor and they told me I had liver disease with possible cirrhosis. They told I would have six months to live if I didn’t change my lifestyle.
I was in shock and all I could think was ‘I don’t want to die’.
In hospital: I could hardly walk
The doctor said he wanted to keep me in hospital for a few days and try some medications and observe me. The next day he came to see me and he didn’t look happy at all. He said that there was definite scarring on my liver and if the medications didn’t work or if I didn’t change my lifestyle, follow a very strict no added salt diet, no alcohol, lose weight and take care of myself, I would have six months to live.
I thought my entire world had fallen appart. I still had no idea why this was happening to me and was so scared.
In that week I was in hospital I had numerous scans, ultra sounds, tests, painful needles, fluid drained from my tummy and an MRI using an open sided MRI machine as I’m badly claustrophobic. I couldn’t walk as I was so swollen from all the fluids my body was storing. I hit rock bottom. I just kept thinking I didn’t want to die. Not at only 37. I had only been married five weeks.
So I did as I was told. Totally changed my eating plan following the ‘no added salt’ diet, stuck to my 1200ml water restriction per day, took my meds, joined my husband’s running club, did my research on liver disease and started being positive by thinking ‘I can beat this disease!!’
Me now. I had never seen myself as a runner
And I have! At my six months check up I was told my liver was back to its normal size, no major scarring, slight cirrhosis down the left side of my liver and I didn’t need a liver transplant. I had gained so much confidence due to a six stone weight loss, my skin was so much healthier but best of all ‘I beat liver disease! I’m a survivor!’
I wouldn’t be where I am now without the support of my family, especially my dad who would drive me to appointments when my husband was at work, my amazing friends and best friends in the world Chris and Tracy, the fabulous staff at Sunderland Royal Hospital and everyone at our running club The Silky Striders.
Most of all though my amazing husband Alan. He spotted my eyes going yellow and all the signs that something wasn’t right, puts up with my tears, takes time out from work to take me to appointments, makes me feel special every single day. If he hadn’t spotted the signs then I wouldn’t be here today. Many times I have felt like giving up but these people reminded me of how brave and strong I have been to get through this.
Discovering the British Liver Trust has made me realise that more awareness is needed. I wear my running vest with pride and am always trying to do what I can to raise awareness.
Last year I shared my story on Facebook to help the British Liver Trust Sound the Alarm on Liver Disease, and Demand Faster Diagnosis through their online petition.
The campaign continues this year, as Covid-19 has only made things harder for all of us with serious health problems to get the care and treatment we need.
We are making progress. The petition has the backing of over 14,000 people and as a result MPs from both Labour and the Conservative parties have asked questions of the Health Minister in Parliament, on behalf of liver patients. Using Freedom of Information requests the British Liver Trust has begun asking tough questions of those in primary care – those with the responsibility to identify people with liver disease and put them on the right treatment programme as soon as they can.
The earlier the diagnosis, the better for everyone.
This work all takes the British Liver Trust time and funds, and so please make a donation to Sound the Alarm today.
Help continue the fight against liver disease, for all of us who are fighting liver disease, and for all of those who have sadly fought and lost. Things must change.