A terminally-ill mum who was denied a life-saving liver transplant for ‘missing appointments’ says she will never give up her fight – despite only being able to live day-to-day.
Bonnie Frost, 50, was given eight months to live in February last year.
She received her first liver transplant to treat an auto-immune disease more than 10 years ago to, and now needs a second transplant after her body began to reject the organ.
But the grandmother is in a dispute with healthcare providers after she was denied the second transplant, which she believes could save her life.
The only explanation given for the refusal was "non-compliance" with hospital appointments in Birmingham, which she says she attended to the best of her ability, according to Wales Online .
The former special educational needs teaching assistant said: "It’s very frustrating to know that I can’t make plans further than a few days ahead. It’s very limiting.
"It’s very difficult. We no longer go on holiday. I arrange to do things with my family or friends and often have to let them down. Luckily they are very understanding.
"Unfortunately it’s not so easy for my grandchildren. They don’t understand and get extremely upset.
"At my 50th birthday party I proposed to my partner Stephen. He accepted but now we realise we can’t actually book a wedding."
Bonnie says she still believes a transplant could save her life.
"I have never been told that it isn’t the answer," she said.
"There are numerous people in much worse health than me on the transplant list.
"I have never been given any medical reason why a transplant wouldn’t be viable. I just don’t have anyone fighting my corner."
Bonnie, who has three children and two grandchildren, received her first liver transplant shortly after being diagnosed with primary biliary cirrhosis in 2007.
She had a clean bill of health until her body began rejecting the liver in 2012.
But she was denied access to the transplant list following another medical assessment at Queen Elizabeth Hospital Birmingham in 2017.
Bonnie said she was told she hadn’t satisfactorily complied with hospital appointments and so wouldn’t be put onto the transplant list.
She said she had tried to attend appointments to the best of her ability but as a single mother she wasn’t always able to make the trip.
"The tough part is watching everyone I know making plans for their future knowing I don’t really have one and feeling like there is nowhere to turn for help," she said.
"Knowing that there is a possibility to give me my life back but being told I don’t deserve it. That decision is so hard on my children, my partner, my mum, my siblings and my fantastic friends that it breaks my heart."
Bonnie said she has regular blood transfusions every four to six weeks because her hemoglobin levels can drop dangerously low.
When those levels are correct she can feel "almost normal" but when they drop she can become completely helpless.
"Daily life when my levels are right is very good," she said. "I feel almost normal."
"But when my levels drop I’m basically helpless because I go dizzy if I stand so my balance is off. I get breathless trying to do anything so pretty much have to rely on others for everything."
Bonnie said she retains an upbeat attitude for her family’s benefit.
"I try not to focus on all the negatives. I try to stay positive and upbeat," she said.
"I will never just give up. I owe it to my family to always do what I can to keep going."
A University Hospitals Birmingham NHS Foundation Trust said: "A decision on whether to list a patient for transplant is made by an expert multi-disciplinary team.
“Our clinicians make these decisions on a case-by-case basis and with regard to the safest and most successful outcomes. If a patient is not happy with the decision, we do support them to seek a second opinion in another transplant centre.
"The trust has no further comment to make."
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