'I'm living with an extremely rare blood cancer - but I just want to go home'

Joanne Glover with her daughter before her symptoms started
-Credit: (Image: TikTok/Joanne Glover)

It only affects around 500 people a year in the UK, with many more who remain undiagnosed.

Amyloidosis is a group of rare conditions where a protein, called amyloid builds up in your body and can cause problems with your organs and crucially, the condition cannot be cured. With a range of symptoms from feeling tired to shortness of breath, often amyloidosis can be put down to other health problems, something one mum from Bacup knows all too well.

Joanne Glover first started experiencing a change in her health around three years ago. The 42-year-old first started with fatigue but then, she experienced extraordinary pain in her feet.

Speaking to LancsLive about the early days of her symptoms, Joanne said: "This was the very, very first thing. It was so bad that I couldn't sleep in my bed. I had to sleep with my feet up on the sofa and lie on the floor. I never had anything like it before but it was constant."

Aware something may be untoward, Joanne visited her GP and was informed it was likely to be the effects of long-Covid, after the mum-of-three had contracted the illness a few months prior. To try and relieve the pain she was in, Joanne was using painkillers and a TENS machine, but nothing was working.

Over the course of the next year, Joanne experienced more symptoms before finally getting answers. She explained: "My eyeballs used to go really really blood shot red. She has bravely documented her journey on social media.

"My feet and my ankles were really really swollen. My skin had got a yellow tinge because my kidneys had started to go.

"Just generally, I was feeling like I wasn't right, I wasn't feeling well at all." 12 months after her first symptom, Joanne started to vomit blood and was transferred to Burnley Hospital.

There, she was told she should have been given omeprazole, a medication to protect the stomach lining but instead, Joanne was given anti-inflammatory drug, naproxen. Unfortunately, this eroded her stomach lining and she needed to be admitted to hospital.

Medical professionals eventually discovered the swelling of her feet and ankles and the yellowing of her skin was down a problem with her kidneys. As a specialist kidney hospital, Joanne was taken to Royal Preston Hospital and was going to be discharged after being diagnosed with nephrotic shock syndrome.

However, the day before she was due to be discharged, Joanne collapsed on the ward in a "coronary episode." She added: "That's when a doctor there decided to do all these tests and they tested for amyloidosis and it came back positive and I started chemotherapy the next day."

Joanne found out the amyloidosis had been "attacking" her kidneys, heart and the pain she experienced in the early days was because the protein was also attacking her nervous system. She was also passed on to a hospital in London and had a six-month course of chemotherapy where she was then in remission.

After this, she had a further six months where Joanne thought she had turned a corner, but things were about to get a lot worse. With further tests, it was found Joanne needed an urgent heart transplant and she needed to stay in the hospital before a heart became available.

"I had that done in March last year and everything was fine," Joanne explained. "I was recovering from that and then in November last year I went for a biopsy and it was discovered that there was a rejection.

"My heart was being rejected and I had to be admitted to get a medicine they give to reverse the rejection. So I was in for about a month, for the whole of December and they discharged me two days before Christmas.

"By the 4th January I was unconscious at home, I had caught the flu because I was so immuno-suppressed. I had caught the flu and taken to intensive care.

"I was then transferred to Birmingham and got discharged only two weeks ago on Tuesday." Over the past six months in hospital, Joanne has said it's been "one thing after the other".

She was due to be discharged three times in this period, but had continuously received tests showing more infections and complications. This included severe oesophagitis, recurrent postural hypotension episodes and heart transplant rejection surveillance.

Whilst there, it was also discovered that Joanne's amyloidosis had returned and she needed another course of chemotherapy. However, this was paused a few weeks ago due to a severe lung infection.

All this time, Joanne was staying in Birmingham, away from her husband of 21 years and her three children, aged 20, 16 and seven. She is soon to restart her chemotherapy treatment, which is likely to last until the end of the year.

In Bacup, the family live in a three-storey property, which Joanne is unable to return to as she struggles to move around and is in a wheelchair. She is living at her mum's home and sleeping on the sofa, but is hoping to raise money for a stairlift in her property and further adaptations, including a bathroom.

For this, the family have set up a Go Fund Me page to raise money for her home adaptations. Joanne says her husband's employer has been unsupportive and the time he has had to take off has all been unpaid.

"It's not been easy," Joanne said. "I just want to go home."