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‘I came so close to death, I started to think about who would care for my children...’

Joe Alder from Garstang almost died after suffering from Liver failure

Joe Alder from Garstang almost died after suffering from Liver failure

It was a moment of lightness following a harrowing ordeal in which Joe had come so close to death she had started sorting out her will and thinking about who would care for her children.

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 and my partner Andy began calling me ‘Dora The Explorer’.

“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 energy consultancy Inenco 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. I was sleepy all the time, and I could just be sat there and the next moment I would be fast 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 filled in a questionnaire on sleep patterns. The results showed that she was sleeping excessively.

Joe says: “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 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.”

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: “They took my bloods and then I saw a doctor, who sent me home and told me to return later for an ultrasound.”

However, the following day, 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 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 liver transplant. She was referred to St James’s Hospital in Leeds, which specialises in transplants.

As soon as she arrived there, Joe was given IV steroid treatment and had to fill in paperwork to be put on the list for an emergency transplant. To prepare for the surgery, she began having tests and she talked to a liver nurse about the implications.

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 kept asking me to count backwards in sevens from 100 to test my reaction and brain function.

“I had been doing okay with the tests, but one morning 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 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 began to kick in and her liver inflammation numbers came down until she reached the point where she was out of danger.

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 okay 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 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 condition, which is when your immune system starts attacking your liver.

“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.”

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.

“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.

“Even though my life has changed dramatically, I know I am very lucky to still be here.”

 

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