Mum-of-two Joe Alder came close to death after suffering liver failure.
She tells AASMA DAY why she is now fighting to raise awareness of liver disease which is not connected to alcohol.
AS the nurses gathered around her bed jokingly nicknamed her “Marge Simpson” on account of her yellow skin, Joe Alder laughed out loud despite the pain wracking her body.
It was a moment of frivolity and lightness following a harrowing ordeal where Joe had come so close to death, she had started sorting out her will and thinking about who would care for her children if the worst were to happen.
Smiling as she remembers how the medical staff and her family tried to keep the mood upbeat by gently poking fun at her jaundiced skin, Joe recalls: “I was so yellow that the nurses started calling me Marge out of the Simpsons and my partner Andy began calling me ‘Dora The Explorer’ because of my black bob and yellow skin.
“We kept our humour and positivity throughout it all. You have to keep smiling as, if you didn’t, it would all get too much for you.”
Joe, 36, who has teenage children Josh, 17 and Chloe, 13 and lives in Garstang with her fiance Andy McKendry, was struck down with liver failure at the end of April last year.
However, she now realises she had been displaying the symptoms of the disease about a year before that.
Joe, who was working as a project manager for Inenco energy consultant in Lytham St Annes at the time, explains: “For about 12 months before I became poorly, I was extremely exhausted.
“I could go to bed at 7pm and wake up at 8am and I would still feel absolutely drained and as if I hadn’t slept.
“I was sleepy all the time and I could just be sat there and the next moment, I would be fast asleep.
“My partner and children would make fun of me for how I could just suddenly drop asleep anywhere at any time.
“Andy even used to joke that you could hang me from a washing line and I would still fall asleep.
“I just put it down to having a very busy and hectic life, working full-time and having two teenagers.”
Joe was having problems with her sinuses and was referred to hospital. While she was there, she was asked to fill in a questionnaire on sleep patterns and snoring.
The results showed that she was sleeping excessively and that it wasn’t normal.
Joe says: “After these results, the hospital tested me for sleep apnoea, but after it came back fine, they just dismissed it and I carried on as normal.”
However, things took a turn for the worse in April last year when Joe became really ill and started vomiting.
She recalls: “I could not even keep water down and kept shaking and felt as if I needed to eat straight away.
“I later found out this was because my blood sugars were all over the place because my liver wasn’t working properly.
“I felt so sickly and unwell but it didn’t feel like a sick bug. I knew something wasn’t right so went to see the doctor.
“He gave me antibiotics as he thought it might be a gut infection and told me to go back if I didn’t get any better.”
A couple of days later, Joe’s daughter noticed that the whites of her eyes and her skin were yellow so Joe returned to her doctor who transferred her straight to hospital.
Joe says: “At the hospital, they took my bloods and then I saw a doctor who sent me home and told me to return four days later for an ultrasound.”
However, the following day, Joe’s partner Andy wasn’t happy as Joe was extremely unwell and her skin was bright yellow, so he took her to A&E.
This time, she was admitted straight away and a blood test revealed that Joe’s liver inflammation results were in the thousands when the normal marker should have been about 40.
Joe says: “I should never have been sent home from hospital the previous day. I owe Andy big time for taking me back to hospital the next day.”
Joe was treated with IV antibiotics and anti-fungal vitamin K as her blood was not clotting properly.
However, she showed no signs of improvement so medics told her she was looking at a lifesaving liver transplant so she was referred to St James’s Hospital in Leeds which specialises in Liver transplants.
As soon as she arrived there, Joe was given IV steroid treatment and had to fill in all the necessary paperwork to be put on the list for an emergency liver transplant. To prepare for the surgery, Joe began having tests including ECGs, ultrasounds and chest X-rays and she talked to a liver nurse about the implications of having a transplant.
Joe remembers: “Adrenaline kicked in and I suffered from all the side effects of the steroids, one of which was that I could not sleep.
“I felt exhausted but could not switch off and I was only sleeping about an hour or two a night.
“The toxins in my system also led to me having hallucinations and becoming confused.
“The doctors came in and did regular blood tests and kept asking me to count backwards in sevens from 100 to test my reaction and brain function.
“They did this on a regular basis along with asking me to do dot to dot connection tests.
“I had been doing OK with the tests but one morning, the consultant came and asked me to count backwards in sevens from 100 and I could not do it correctly.
“It was at this point that the consultant told us that things were not looking good.
“I told them to do everything necessary as I had my family and two children to think about.
“I started thinking about the future if anything happened to me and it got to the point where I sorted out wills and where the children would go.
“I prepared myself for the worst but because the adrenaline had kicked in, it was keeping me going and I wasn’t scared.
“All I was thinking about was Andy and my children.”
Thankfully for Joe, the steroids suddenly began to kick in and her liver inflammation numbers came down until she reached the point where she was out of danger for a transplant.
Joe explains: “It was a complete turnaround as when I had arrived at St James’s Hospital, I had been dying as my liver was in failure.
“They gave me the maximum dosage of steroids and, luckily for me, they began working.”
After about 10 days, Joe was allowed home, but had to go to Leeds regularly for steroid treatment and blood tests.
However, when Joe left hospital, she could barely walk and tests showed that she had steroid induced myopathy – which is when the steroids weaken the muscles.
Joe says: “I had all the side effects you get with the steroids including a bloated face, bad acne, weight gain, not being able to walk and immense pain throughout my body.
“When I came off the steroids, my walking still wasn’t great and they are currently doing further tests as they believe the trauma may have kickstarted a genetic disorder. My mobility is still affected and although I am OK pottering around at home, when I go out, I have to use a wheelchair.
“It has now been 15 months since I suffered the liver failure but I still feel horrendous.
“I wake up each morning and feel like I have been hit by a truck.
“I feel exhausted and suffer from chronic body pain which I have to take medication for.
“I really have to pace myself. I lost my job because of being poorly as I had to have so much time off and I would not be able to do that job now anyway.
“Having liver failure has left a massive effect on my life.
“I feel like an old lady in a young woman’s body.”
Specialists at St James’s Hospital investigating the cause of Joe’s liver failure gave her a diagnosis of Nitrafurantoin induced autoimmune hepatitis.
Joe was horrified to discover that this mean that a low dose antibiotic that she had been taking for several years to prevent recurrent water infections is believed to have kickstarted the liver disease.
Joe explains: “The consultant at Leeds told me he had only seen about 10 cases where this had happened in his career but basically, it turns out the antibiotics I had been prescribed to stop recurring water infections had caused the autoimmune hepatitis which is when your own immune system starts attacking your liver.
“I had been suffering from recurring water infections which were horrendous and my doctor prescribed me this antibiotic on a low dose to stop me getting them.
“I had to take one tablet a night and had been taking them for about three years.
“I did not give taking these antibiotics another thought as my doctor had prescribed them. I thought they were safe. I think that anyone taking regular prescribed medication should have regular blood tests to check their body function to make sure they are not having an adverse effect.
“If I had had a blood test when I was feeling so tired, this condition might have been picked up before I got to the liver failure stage.”
Joe says that when she tells people she has suffered liver failure, they automatically presume that all liver problems are caused by alcohol and she wants to fight this stigma.
She says: “Before my liver failure, I used to drink socially but in no way was I anything like an alcoholic.
“Now I do not drink at all as I want to keep my liver as healthy as I can and I am also careful with what I eat.
“I take medication and have to go to Leeds every few months for reviews. My liver function levels are currently stable. I am hoping to keep my liver as healthy as possible so I will not need a transplant.
“My aim is to raise awareness of non-alcohol related liver disease and people like myself where taking prescription medication brought on the condition.
“It is frustrating when I see liver disease covered on television programmes but it is always linked to alcohol when in reality, this is not the case.
“I want to thank everyone at Leeds St James, they have been fantastic. The treatment I received and ongoing support is second to none.
“I also want to thank my partner and children and close family for their support as they were all amazing.
“Even though my life has changed dramatically, I know I am very lucky to still be here.”