Isobel’s story: “I want everyone to understand there are hundreds of causes of liver disease”

From the time she went for a liver biopsy, Isobel has faced stigma relating to liver disease. From work colleagues to medical professionals, she faced comments about weight, exercise and alcohol, which left her feeling as though she didn't deserve a transplant. Thank you for sharing your story, Isobel. 

In 2005, I had some routine bloods done and the results revealed my liver function reading was 'abnormal'. The following June my Mother died and a junior doctor on duty that night put on her death certificate 'hepatic failure due to cirrhosis'.  This was soon changed by a consultant, who apologised, as she didn't have cirrhosis, but did indeed have hepatic failure due to possibly an underlying cancer.  

 Given the results of my tests a year before, my GP and my Mum's consultant decided to send me for a liver biopsy (I wanted to know if there was anything hereditary).  This is when I started to face stigma for my liver condition. When I was getting more bloods done at the GP surgery, the nurse said 'so you're a boozer then?'.  When I mentioned this to my younger daughter she was furious and wanted me to complain.  I didn't, but it's only when I thought about it later, maybe I should have.  

The results from the liver biopsy showed I had NAFLD (non-alcohol fatty liver disease).  I was given no advice on diet or exercise, and certainly didn't know what lie ahead for me.  Two-and-a-half years later, I was having a routine ultrasound and found out that I had cirrhosis.  I had had Type 2 diabetes for approximately ten years (without symptoms) and that had attacked my liver too. I also had Stage 3 Chronic Kidney Disease.  

 At the diabetic clinic I told them I had cirrhosis but it wasn't on my records.  I had to argue the point and eventually they found the results (they had been filed in the wrong place) and I started seeing the gastroenterology consultant at my local hospital.   

 In March 2009, I woke up feeling sick. I was shocked to see black, coffee grind liquid in my vomit!  I was sent to hospital and it was confirmed I had had a variceal bleed.  Then followed several melaena episodes (passing of black stools), with several endoscopies, colonoscopies and sigmoidoscopies.  I had lots of urine infections and gynae problems, with several more 'oscopies' and an ovary removal. My husband used to joke that our local hospital was my 'holiday home'!  

In February 2016 I was referred through to the Scottish Liver Transplant Unit in Edinburgh. My liver wasn't bad enough at that time so was monitored by my local hospital.  In January 2017 I was referred back to Edinburgh.  This time my liver had decompensated enough and it would be arranged for me to go through for a transplant assessment.  A shadow had shown on the CT scan so I was sent for an MRI which confirmed I had HCC (cancer).  I had my transplant on 31st August 2017 but was told the cancer wouldn't have killed me, the cirrhosis would, and I wouldn't have seen Christmas!  

My diet, lack of exercise and undiagnosed diabetes caused my liver disease.  I was running around after the children and grandchildren, but just jumping in the car to ferry them about, not actually being physical. I also often snacked at home at night and, when I was at work, I snacked during the morning and afternoon tea breaks and it didn’t help that my boss was a brilliant baker!  

Even though I knew my liver condition was not related to alcohol, you just need to mention liver disease and everyone assumes it's caused by alcohol.  I grew up with an alcoholic father so understand that it's a disease too.  I don't drink but I don’t judge people who do.    

When I was having lots of hospital appointments or admissions, I had to talk with HR at work and when word got around that I had a liver problem, some of my colleagues assumed it was because I was an alcoholic.  Attitudes changed for some and if I went in to work looking tired (as I was ill) it was assumed I had had a 'rough' weekend. Even when I wore make up to try and look better, it was assumed the same.  I couldn't win! It hurt because I thought they were my friends and they would be supportive during what was a very difficult time physically and emotionally. 

Other people's comments made me feel like I didn't deserve a liver transplant

Comments I've had made to me include: 'you should change your diet', 'do you not do any exercise?', 'are you a secret drinker?', 'why don't you lose some weight?',' it's your lifestyle choices, isn't it?', 'is this because you drank too much when you were younger?', 'how are you going to celebrate New Year as you're Scottish?'.  This all made me feel like a second-class citizen, as though I had brought this illness on myself and didn't deserve a liver transplant.  

On a lighter note, my grandchildren used to call me 'Spongebob Granny' because I was so yellow!  i loved that!  

I did a piece for the local newspaper explaining that not all liver disease is caused by alcohol.  I wanted GPs and the public to understand that there are hundreds of causes of liver disease. I took leaflets and posters from the British Liver Trust round to some local GP surgeries to try and raise awareness. A few weeks later while at my GP surgery, I noticed none of them were on display.  After complaining, they were put out right away.  I just want people to understand more about all the kinds of liver disease. 

Since my transplant in 2017, my diet has improved (and could still be better!) and I now exercise several times a week (Activeage classes, badminton and line dancing).  I also got into throwing sports as both of my daughters are throwers and my older daughter competed in the Hammer final at the Commonwealth Games 20 years ago.  She has been coaching me in shot putt, discus and hammer and at the weekend I won three gold medals in the Scottish Masters for my age group. I am now hoping to compete at the Transplant Games in Leeds at the end of the month.  

My husband keeps telling me to slow down, but I do all of these things to honour my donor and her family.  She has given me the gift of life and I don't want to waste it.  I also want to make up for the two years pre-transplant when all I could do was sleep!  



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