Joan’s consultant believes she had been living with hepatitis C for years before she experienced symptoms and was finally diagnosed. Now that she has cleared the virus, Joan is encouraging everyone to be tested for hepatitis too. Thank you for sharing your story, Joan
The only thing I used to know about hepatitis is that there are different ones. It was only when I was diagnosed with hepatitis C that I found out just how much damage it can do. I had stage 3 kidney failure, decompensated cirrhosis and was about to be put forward for a liver transplant, but thanks to a good consultant and looking after myself, I pulled through. I am now on four-monthly check-ups and my liver is recovering.
I’m sharing my story to raise awareness of the virus and how easy it is to get tested and treated. If people were diagnosed earlier, it would save their livers and NHS resources. All it takes is a finger-prick test at home which you send off for the results. If you’re positive, the treatment is a course of tablets. Otherwise, you might not know you have hepatitis C until you get the same severe symptoms I did.
With the amount of damage that’s been done to my liver my consultant thinks I’ve had hepatitis C for a lot of years. I’ve never touched drugs or put needles in me, but I might have been infected through a blood transfusion nearly 40 years ago. Unfortunately, the medical records from that time were destroyed in 2011, so I’ll never know.
Specialist referral
For two years before I was diagnosed my weight had been going up and down, I had mild depression, no energy, back ache and shortness of breath. Because of my age I thought it was the menopause. However, within the space of a few days in July 2024 my clothes became so tight that I couldn’t get them on at all, then overnight I went from 58 to 64 kilos.
My GP suggested a load of blood tests and rang me shortly after saying: “There’s something really wrong with your liver and kidneys.” A cancer blood test came back really high too and I was referred to a specialist for a bowel obstruction.
I had the consultation within 10 days and was sent for more blood tests. My bowel test results were normal, but my stomach was still swollen. I was admitted to the medical assessment ward for yet more tests, then the surgical ward where they took 5.5 litres of fluid off my stomach and finally the liver ward. They asked if they could do HIV tests and I said if you can find out what’s wrong with me, I’ll have every test.
My consultant was getting me ready for a liver transplant assessment, but in the meantime I was put on a 12-week course of tablets
It turned out to be hepatitis C and as well as decompensated cirrhosis and kidney failure I also had a blood condition called cryoglobulinemia, which made my fingers and toes cold. Because my liver wasn’t working, I had malnutrition and multifactorial anaemia and my sodium levels were going downhill.
My consultant was getting me ready for a liver transplant assessment, but in the meantime I was put on a 12-week course of tablets after which I would have to wait another 12 weeks for a final blood test to see if they had cleared the virus. I was also prescribed water tablets for the ascites, but they made me really ill so I had to stop taking them.
There were British Liver Trust posters at the hospital and I read their booklets cover-to-cover – they answered all my questions about hep C. Until I read them I didn’t know how much the liver does and how important it is to keep you alive.
Before being discharged I was given a dietary plan and told no salt and only 1,500mls of fluid a day. I also couldn’t drink alcohol again. I didn’t want to anyway – I’d last had one two weeks before diagnosis.
Hep C had gone
There were no side-effects to the tablets for the hep C and my last drain was 11th November 2024. I had another one booked for December but hadn’t put enough weight on because the fluid wasn’t coming back. A scan in February 2025 showed there was little fluid and although my liver was still small, I no longer need a transplant. My kidney function is now back to normal and thanks to a healthy diet and looking after myself, further tests in March showed the hep C had gone and they’re keeping an eye on my blood. My husband says I look so healthy now.
I wasn’t really stigmatised by anyone, it was more of a feeling I had because I think a lot of people don’t really understand what hepatitis is. At first I was worried about having my grandchildren because of blood-to-blood exposure, just in case I cut myself. And how far should I go in explaining it to people – should I tell my hairdresser? In the end, I decided not to, and just waited until I was clear of the virus instead.
I’m quite a bubbly person and look forwards rather than backwards – I was infected with hep C and I’ve got to just face it, because when you look like you’re pregnant with triplets, life’s got to get better. If you’ve been diagnosed with hep C, be positive. There’s always light at the end of the tunnel – and there are that many things to cure you these days, so be aware of your condition, don’t hide away and pretend it’s not there.
