We'd no idea we had hepatitis until we fell seriously ill
Viral hepatitis is a global epidemic that can affect millions of people without them even being aware of it. With World Hepatitis Day this Friday, Karen Ireland talks to two women who battled and continue to live with this still stigmatised disease.
‘The doctors told my family they weren’t sure they could save me’
Marie Cromie (59) is married with a grown-up son and daughter and two grandchildren. She lives in Belfast. She says:
I used to work as a school patrol lady and back in 2005 I found I wasn’t feeling well all the time. I was constantly tired and I had pains in my joints. I went to see my GP and they advised me to go straight to the hospital. When they did tests they asked me if I was on a lot of painkillers.
Shortly after I was sent home I got a call to come in again as the doctor wanted to speak to me.
Obviously, I was very worried as I knew something wasn’t right and I suspected they were going to give me bad news.
When they told me I had hepatitis C, I was in complete shock as I didn’t really know what that was or what it meant for me.
I think I contracted my hepatitis through infected blood when I had to have transfusion after my son was born in 1981.
I went to see a consultant in the Royal who explained everything. He told me my liver was damaged and that the condition would make me very tired. He also warned there was a chance I could get sclerosis of the liver and need a transplant.
Unfortunately, he was right and one night I took a huge bleed and ended up in intensive care. The doctors told my family to prepare for the worst and that they weren’t sure they could save me.
I was in bad shape and was flown by air ambulance over to King’s College Hospital in London to see if I was suitable for the transplant list.
Thankfully I was accepted and in 2007 I got my first transplant. I was told at that stage that because I still had the hepatitis virus there was a chance it could attack the new liver.
That is exactly what happened and I became very ill. My stomach started to swell up with fluid and I had to go in to have 10 to 12 litres drained every couple of weeks.
I wasn’t eating and went down to just a few stones.
I was sent for another assessment and told I needed a new liver. By this stage I was slowly dying and my family were heartbroken watching me just fade away.
I was told that I would be better going home to spend quality time with my family so I was flown back to Northern Ireland. In reality, I was sent home to die.
But as soon as we got home we got the call to say they had found a liver and the air ambulance had to fly me back again for surgery.
Two patients are called at a time for a transplant in case one isn’t suitable, but I was a perfect match and prepared for surgery.
I went in at 4pm and wasn’t out of theatre until 6am the following day.
The surgeons told my husband it was one of the longest they had performed as there were complications because I had a massive hernia at the time. I was in King’s for three weeks and in intensive care before being transferred to the Royal for the rest of my convalescence.
Now I am doing great. They keep an eye on me and I am on Warfarin for life. I still get very tired if I overdo things and my legs get sore, but I have my life back and more time and energy to spend with my family.
Before, I had to just sit and watch my grandchildren play, but now I can actually join in the fun which feels fantastic.
The drugs I am on keep my body clear from hepatitis, but I will always need regular tests and they will keep an eye on me.
I had my second transplant in 2015 and I thank God I came through it. I also pray at night for the families who were brave enough to make the decision to donate their loved ones’ organs and to give someone else a chance at life. I am so grateful to them.”
‘My new liver has become damaged, I need another transplant’
Jennifer Fegan (65) is married to Terry (70) and they live in Newtownards. They have two grown-up sons, Ryan and Aaron. She says:
I was first diagnosed with hepatitis C 20 years ago. At the time, I was very fatigued and sore all the time.
I had a lot of tests done and at one stage they thought I had liver cancer. In the end, the doctors told me I had Chronic Immune Hepatitis.
I didn’t really know what it was at the time, but the doctors explained how it would affect me.
It looks like I contracted it when I was 16 and had my tonsils out. I had needed several blood transfusions and we think infected blood was the source — but we have no real proof. That is the only thing which makes sense to me anyhow.
I was treated for years with drugs and, though I didn’t feel great all the time, it was relatively successful.
Four years ago, I took ill and after tests it was found that I had three tumours on my liver. These had to be treated with a chemo-like drug and electrodes.
After that I was told that I would probably need a liver transplant and I was sent to King’s College hospital in London for an assessment.
It turned out that I was accepted onto the list and I had to wait 11 months and got my transplant on August 31, 2015. That was the phone call we had been waiting on and we were delighted when we were flown over and I was confirmed as a match.
However, in January last year I ended up in and out of hospital every other week. I wasn’t well at all. I had a lot of fluid on my stomach and I had to go to hospital to have litres of it drained.
Test after test finally revealed what I had been dreading — the transplanted liver had become damaged. I went back over to King’s College Hospital again and was assessed for the transplant list. I was accepted back on the list and have been waiting on a call every day since October 12, 2016.
Life is difficult at the moment.
I am back and forth to the Royal in Belfast every week and I don’t feel great. The worst problem is I feel fatigued all the time and I have no appetite.
I don’t want my weight to go down so much that I am not healthy for surgery so I must take special drinks. I have to be fit to have the operation when the news comes.
I also have a stent in my bile duct to keep it open and working, and I have to have it changed every few months.
The worst thing, though, is having no energy and just wanting to sleep all the time. I also feel depressed as I have no real quality of life, so it takes its toll mentally.
There is still a stigma attached, I feel, to having hepatitis as it is normally thought to be an illness which alcoholics or drug addicts get. I know how I got it and I have no time for people who draw their own conclusions. I feel there isn’t enough education about the illness.
The care I got both at King’s and ongoing at the Royal is second to none and their expertise is wonderful.
The Liver Support Group at the Royal have been fantastic and they are always there.
I just hope and pray I get a new liver soon. I barely get out of the house and my husband has become my carer. He says that is what he signed up for when he married me, but it is difficult.”
What is hepatitis and who can help?
Hepatitis is an inflammation of the liver. There are three main types: A, B and C.
The RVH Liver Support Group is a Northern Ireland-based charity operating throughout the whole of the province. It is run by a totally voluntary committee with the help of volunteer liver patients and their carers.
It supports not only patients but their relatives and friends, including children with liver disease.
The group engages in fundraising to provide medical equipment for the liver wards and outpatients, and supports research projects.
It actively promotes the Organ Donor Register.
The aim is to raise awareness of all types of liver disease.
For further information or support you can contact www.rvhliversupportgroup.org.