‘Long Covid has taken away my ability to eat food or urinate - I don’t recognise myself anymore’
Views: 5061
2023-08-10 18:56
A young woman whose health “deteriorated rapidly” after being diagnosed with long Covid and suffering a liver bleed is now in a wheelchair, feeds herself through a tube in her chest and has been unable to urinate in three years. Abigail Snowball, 29, was told she suffered from a rare condition known as Fowler’s Syndrome a few months after she was diagnosed with long Covid in July 2020 and her bladder stopped working. The social worker, from Northumberland, says she was “never sick” and enjoyed long runs before testing positive for coronavirus in early 2020 and feeling a sharp pain under her ribs which scans showed was a bleed on her liver. Abigail had not fully recovered from the virus and since the diagnosis, her health has gone from bad to worse, to the point where she has not been able to urinate in three years. She now depends on her husband Mark, 34, to carry her to the bathroom so she can empty her bladder, which can take up to four hours, and has not been able to enjoy a mouthful of food for nearly a year. “I had never really been ill before,” Abigail told PA Real Life. “As a child, I was always really lucky and never poorly. I look back at pictures from before Covid and I don’t even recognise myself.” Abigail had completed a 20-mile race, the Run Northumberland BIG 20, just a week before testing positive for Covid and having to quarantine away from Mark, who works in maintenance for Nissan. “It was very much at the start of the pandemic, back at the time when there weren’t any vaccines or much testing,” she said. “It was just tiredness like I’ve never felt before in my entire life. I remember having a cup of tea and struggling to lift the mug up.” Like many other people’s experience of catching Covid, Abigail’s health improved over the next 10 days. “I did get better, but I never fully recovered,” she said. But a couple of months later, while visiting her parents, Jane and Ray Cresswell, in Cornwall on holiday, she suddenly began feeling a sharp pain under her ribs. “It was a really strange location to have pain,” she added. She visited the GP a week later and was admitted to Northumbria Specialist Emergency Care Hospital (NSECH) in July 2020, where scans revealed Abigail had suffered a bleed on her liver. “That’s when they diagnosed me with long Covid,” she said. “There was no other explanation, because they tested for blood disorders and carried out a scan. “They asked me if I had a fall or accident, but there was literally nothing.” Abigail was recovering from her liver bleed in hospital late one evening when a nurse asked when the last time she urinated was. “I actually thought, ‘god, it wasn’t since this morning’,” she said. “From that point, my bladder never regained any function. That was really the start of my health declining quickly.” Doctors hoped her bladder block was simply a result of the liver “trauma” and that she would be on the mend soon. But, sadly, this was not the case. A few months later, Abigail was diagnosed with a rare condition called Fowler’s Syndrome, which causes women to have problems passing urine. Abigail’s condition has deteriorated over the past few weeks and she is now losing weight rapidly. “I am now sleeping on the sofa downstairs and my husband Mark is having to carry me to the toilet and back again,” she said. “We can spend up to four hours at a time trying to drain my bladder, and the pain is just unbearable. “I went from running 20 miles to using a wheelchair. You don’t realise how inaccessible the world is until you are in that position.” Since the diagnosis, Abigail has spent more than 350 days in hospital and undergone 12 surgeries, including one in October 2021 to try and reconstruct her bladder. To make matters worse, she developed intestinal failure last year, which means she can no longer eat food. “I haven’t eaten anything in a year now,” she said. Instead, she is fed through TPN (total parenteral nutrition), a tube in her chest which delivers nutrients directly into the blood stream. Abigail and Mark, who married earlier this year in May, both received close to six months of training on how to perform the feeding procedure given there is a high risk of infection. “We had never even heard of that – being fed through a line into your heart,” she said. Abigail has been told by doctors that her liver bleed was “extremely likely” to have been caused by Covid. While Covid is known to harm the lungs, it has also been found to affect other organs, including the heart, liver and kidneys, but wider research is needed to better understand its long-term effects. Liver problems are common among patients with Covid-19, according to a study carried out by researchers at Oxford University and published in the peer-reviewed journal Hepatology Communications. Abigail, whose condition is considered “severe”, is hoping to receive specialist treatment in London, known as bladder Botox, which involves injecting Botox into the bladder every three to nine months, but there is no guarantee this will work. “Because of how severe and complex my case is, we’ve exhausted all our options here and the doctors are saying that I need to see the specialists in London,” she said. “Removing my bladder completely remains on the cards, but it’s incredibly high risk because of my intestinal problems. “There is no cure for Fowler’s, so it’s about managing it in the best way possible.” The combination of health conditions has left Abigail unable to perform everyday tasks. “It’s funny because the things I want to be able to do are so normal,” she said. “Just being able to wake up, take the dog for a walk and go to work. “Things that in the past, I completely took for granted.” To help cover the costs, Abigail’s friend Emma Holt has set up a GoFundMe which has received thousands of pounds in donations. “We never imagined in our wildest dreams that we would raise the amount of money that we have already,” she said. “It’s the one thing that really keeps us going, when things are really difficult. “Knowing that we have so many people behind us and supporting us is amazing.” Fowler’s Syndrome is most often caused by infection or following surgery or trauma, but a link to long Covid has yet to be established and more research is needed. Dani Coombe, CEO, Fowler’s Syndrome UK said: “It’s too early to say if long Covid is a trigger for Fowler’s syndrome; we haven’t seen an increase in Fowler’s and retention post-Covid yet, and there is no indicator that urinary retention gets worse. “Our research into what patients believe triggered their urinary retention shows that infection is the most common trigger at 57 per cent, followed by surgery in 32 per cent of patients and trauma at 19 per cent. “It would be noteworthy to see in coming years if there is an increase in women with Fowler’s because of the trauma of Covid-19.” Read More Fake meat is dying, but that shouldn’t mean the end of veganism What I gained (and lost) from walking 10,000 steps a day for five months Woman behind ‘not real’ plane tirade identified as marketing executive with $2m home Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live

A young woman whose health “deteriorated rapidly” after being diagnosed with long Covid and suffering a liver bleed is now in a wheelchair, feeds herself through a tube in her chest and has been unable to urinate in three years.

Abigail Snowball, 29, was told she suffered from a rare condition known as Fowler’s Syndrome a few months after she was diagnosed with long Covid in July 2020 and her bladder stopped working.

The social worker, from Northumberland, says she was “never sick” and enjoyed long runs before testing positive for coronavirus in early 2020 and feeling a sharp pain under her ribs which scans showed was a bleed on her liver.

Abigail had not fully recovered from the virus and since the diagnosis, her health has gone from bad to worse, to the point where she has not been able to urinate in three years.

She now depends on her husband Mark, 34, to carry her to the bathroom so she can empty her bladder, which can take up to four hours, and has not been able to enjoy a mouthful of food for nearly a year.

“I had never really been ill before,” Abigail told PA Real Life.

“As a child, I was always really lucky and never poorly. I look back at pictures from before Covid and I don’t even recognise myself.”

Abigail had completed a 20-mile race, the Run Northumberland BIG 20, just a week before testing positive for Covid and having to quarantine away from Mark, who works in maintenance for Nissan.

“It was very much at the start of the pandemic, back at the time when there weren’t any vaccines or much testing,” she said.

“It was just tiredness like I’ve never felt before in my entire life. I remember having a cup of tea and struggling to lift the mug up.”

Like many other people’s experience of catching Covid, Abigail’s health improved over the next 10 days.

“I did get better, but I never fully recovered,” she said.

But a couple of months later, while visiting her parents, Jane and Ray Cresswell, in Cornwall on holiday, she suddenly began feeling a sharp pain under her ribs.

“It was a really strange location to have pain,” she added.

She visited the GP a week later and was admitted to Northumbria Specialist Emergency Care Hospital (NSECH) in July 2020, where scans revealed Abigail had suffered a bleed on her liver.

“That’s when they diagnosed me with long Covid,” she said. “There was no other explanation, because they tested for blood disorders and carried out a scan.

“They asked me if I had a fall or accident, but there was literally nothing.”

Abigail was recovering from her liver bleed in hospital late one evening when a nurse asked when the last time she urinated was.

“I actually thought, ‘god, it wasn’t since this morning’,” she said. “From that point, my bladder never regained any function. That was really the start of my health declining quickly.”

Doctors hoped her bladder block was simply a result of the liver “trauma” and that she would be on the mend soon.

But, sadly, this was not the case.

A few months later, Abigail was diagnosed with a rare condition called Fowler’s Syndrome, which causes women to have problems passing urine.

Abigail’s condition has deteriorated over the past few weeks and she is now losing weight rapidly.

“I am now sleeping on the sofa downstairs and my husband Mark is having to carry me to the toilet and back again,” she said.

“We can spend up to four hours at a time trying to drain my bladder, and the pain is just unbearable.

“I went from running 20 miles to using a wheelchair. You don’t realise how inaccessible the world is until you are in that position.”

Since the diagnosis, Abigail has spent more than 350 days in hospital and undergone 12 surgeries, including one in October 2021 to try and reconstruct her bladder.

To make matters worse, she developed intestinal failure last year, which means she can no longer eat food.

“I haven’t eaten anything in a year now,” she said.

Instead, she is fed through TPN (total parenteral nutrition), a tube in her chest which delivers nutrients directly into the blood stream.

Abigail and Mark, who married earlier this year in May, both received close to six months of training on how to perform the feeding procedure given there is a high risk of infection.

“We had never even heard of that – being fed through a line into your heart,” she said.

Abigail has been told by doctors that her liver bleed was “extremely likely” to have been caused by Covid.

While Covid is known to harm the lungs, it has also been found to affect other organs, including the heart, liver and kidneys, but wider research is needed to better understand its long-term effects.

Liver problems are common among patients with Covid-19, according to a study carried out by researchers at Oxford University and published in the peer-reviewed journal Hepatology Communications.

Abigail, whose condition is considered “severe”, is hoping to receive specialist treatment in London, known as bladder Botox, which involves injecting Botox into the bladder every three to nine months, but there is no guarantee this will work.

“Because of how severe and complex my case is, we’ve exhausted all our options here and the doctors are saying that I need to see the specialists in London,” she said.

“Removing my bladder completely remains on the cards, but it’s incredibly high risk because of my intestinal problems.

“There is no cure for Fowler’s, so it’s about managing it in the best way possible.”

The combination of health conditions has left Abigail unable to perform everyday tasks.

“It’s funny because the things I want to be able to do are so normal,” she said. “Just being able to wake up, take the dog for a walk and go to work.

“Things that in the past, I completely took for granted.”

To help cover the costs, Abigail’s friend Emma Holt has set up a GoFundMe which has received thousands of pounds in donations.

“We never imagined in our wildest dreams that we would raise the amount of money that we have already,” she said.

“It’s the one thing that really keeps us going, when things are really difficult.

“Knowing that we have so many people behind us and supporting us is amazing.”

Fowler’s Syndrome is most often caused by infection or following surgery or trauma, but a link to long Covid has yet to be established and more research is needed.

Dani Coombe, CEO, Fowler’s Syndrome UK said: “It’s too early to say if long Covid is a trigger for Fowler’s syndrome; we haven’t seen an increase in Fowler’s and retention post-Covid yet, and there is no indicator that urinary retention gets worse.

“Our research into what patients believe triggered their urinary retention shows that infection is the most common trigger at 57 per cent, followed by surgery in 32 per cent of patients and trauma at 19 per cent.

“It would be noteworthy to see in coming years if there is an increase in women with Fowler’s because of the trauma of Covid-19.”

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