When Ruth was referred to a gastroenterologist after experiencing pain in her liver and extreme exhaustion he said: "Where have you been? You should have been in hospital." Thank you for sharing your story, Ruth
My liver journey began about ten years ago. I started to have hot flushes whenever I ate anything more than a snack. I asked everyone I could find for a solution, but to no avail. I believe the hot flushes were a sign that my liver was struggling to digest food and generally not coping too well.
I also had problems swallowing food, particularly fibrous foods which would stick in my oesophagus, causing extreme pain. Things developed further with a lot of pain in my liver, it felt like little bubbles or stones running through it. Extreme exhaustion never left me and sleep rarely arrived.
Several visits to the GP culminated in blood tests showing an ALT of 520. Finally, I was referred to the gastroenterologist to be asked: “Where have you been? You should have been in hospital”.
A year of investigations continued; a case of sepsis followed an inconclusive liver biopsy. The blood test numbers were still high and it took a letter from my GP for the hospital to accept that these were not linked to alcohol. I’m teetotal.
At last, I was diagnosed with Autoimmune Hepatitis. The prognosis was not good, it was to be a fine balance between deterioration of the liver and serious side effects from the drugs. It was a dark day to be told they could keep this balance going between five and ten years. My dog had a longer life expectancy than me.
Prednisolone prescribed
I was put on prednisolone and felt great for the first three weeks or so, but everyone responds differently to drugs and after that, it was a slippery slope into depression. Everything became difficult to deal with and I was crying all the time.
I called my GP after a particularly bad episode when I had spent the night trying to stop myself from getting a knife from the kitchen and cutting my liver out. *
I was diagnosed with prednisolone-induced psychosis. I stopped taking the tablets and the depression lifted quite quickly. I was still shell-shocked from the diagnosis, prognosis and how my life had changed – this decline wasn’t in any of my plans for the future.
My husband and I both decided to retire – I cashed in my pension and began to make the most of the time and health left available to me. Azathioprine brought the numbers down and as far as I know, I don’t have any side effects from these drugs. Routine blood tests, scans and procedures continued, thankfully improvements could be seen from the results.
I had decompensated cirrhosis and ascites and a hospital consultant told me this deterioration was probably due to the absence of azathioprine for the last year.
A year later a GP I’d never had any previous contact with, phoned me and told me my bloods were fine. He said: “You’re on azathioprine which is not a good drug to be taking long-term.” He told me to stop taking it. So I did. Unbeknownst to me the consultant believed me to be in remission and asked for follow-up blood tests. At this point I fell through the system; the blood tests were never requested.
Within 11 months I started feeling ill, exhausted, sick and swollen. The GP surgery transferred me to our local hospital and I spent a week undergoing more tests and scans. The results showed I had decompensated cirrhosis and ascites. A hospital consultant told me this deterioration was probably due to the absence of azathioprine for the last year.
Now began the complicated process of undergoing the many tests required to be placed on the liver transplant list. I found myself in the centre of a ping-pong system being passed from one department to another. As fortune would have it, I was blessed to be placed under the care of a local specialist registrar who quite simply saved my life. She understood the complexities of liver disease and the NHS process and arranged all the tests so that I could be swiftly transferred to the care of St James’s University Hospital in Leeds.
Once again, I was told by a doctor, this time at St James’s, that I would be unlikely to see out the next two years. Cue more dark days.
After meeting the surgical team at St James’, I was placed on the transplant list. They embodied a calm, knowledgeable and confident manner. It was a bittersweet moment as I felt deep despair at needing such a process, but grateful relief that I would be in their capable hands.
Since then, the drugs have improved my results enough so that I have been removed from the transplant list. Recent tests have shown oesophageal varices have grown and more drugs are needed. The journey continues.
'British Liver Trust is a trusted source'
If I had to give any words of wisdom, it would be to make sure you understand your condition as much as possible. The British Liver Trust is a source you can trust.
Request to be placed under the care of a hospital that has a dedicated liver unit.
Ask questions and keep asking until the answers make sense to you. Know which routine tests are needed and when they are to be taken. Follow them up yourself as it’s very easy to slip through the net of an overwhelmed system. Writing all your questions and their answers in one dedicated notebook gives an easy view of the situation.
Above all else try not to worry, easier said than done, I know! Worry is simply a waste of the imagination; it hangs over you like your own personal doom cloud and brings you no peace. No one really knows what your future holds. Twice I’ve been told by doctors that my life expectancy is short, I’m happy to say I’ve proved both those predicted dates to be wrong.
* Psychiatric disorders are a possible side-effect of all corticosteroids, including prednisolone. Most people will not develop any serious problems. Speak to your doctor if you start to have mood swings, feel low or depressed, or notice any other symptoms since starting your medicine. Never stop taking your medicine without speaking to your doctor, it can be dangerous.
