‘I was told my symptoms were long Covid – until a devastating diagnosis’

When mum-of-three Joanne Glover went to her GP complaining of unusual fatigue and severe foot pain, she was initially told she could be suffering from long Covid.

The 42-year old from Bacup was sleeping with her ‘feet up on the sofa’ and lying on the floor to try and alleviate her symptoms, saying she had ‘never had anything like it before’.

Over the next year, Joanne saw her ‘eyeballs go bloodshot red’, swollen ankles, and a yellow tinge on her skin, and was eventually rushed to hospital after she began vomiting blood. There, she finally received a devastating diagnosis of blood cancer, reports Lancs Live.

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At the hospital, she was informed that she should have been prescribed omeprazole, a medication used to protect the stomach lining. Instead, Joanne had been given an anti-inflammatory drug called naproxen, which had eroded her stomach lining, necessitating her hospital admission.

Medical staff eventually discovered that the swelling in her feet and ankles and the yellowing of her skin were due to kidney problems. As a result, Joanne was transferred to Royal Preston Hospital, a specialist kidney facility, where she was diagnosed with nephrotic shock syndrome.

However, just before she was set to be discharged, Joanne suffered a “coronary episode” on the ward. She said: “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 learned that the amyloidosis had been “attacking” her kidneys and heart, and the pain she experienced in the early days was because the protein was also attacking her nervous system. She was then referred to a hospital in London, where she underwent a six-month course of chemotherapy and subsequently went into remission.

Amyloidosis, a rare condition affecting around 500 people annually in the UK, often goes undiagnosed. This disease involves an abnormal protein, amyloid, accumulating in the body and potentially causing organ damage.

Unfortunately, there is no cure for this condition. Its symptoms, ranging from fatigue to breathlessness, are frequently mistaken for other health issues.

Following a brief period where Joanne believed she was on the mend, her situation took a dire turn. Further examinations revealed that an urgent heart transplant was necessary, and she was required to remain hospitalised until a donor heart was found.

“I had that done in March last year and everything was fine,” Joanne recounted. “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 her six-month hospital stay, Joanne faced a relentless series of health challenges.

She was slated for discharge three times, but persistent infections and complications delayed her release. Joanne’s ordeal included battling severe oesophagitis, recurrent episodes of postural hypotension, and ongoing heart transplant rejection surveillance.

While in the hospital, it was also discovered that Joanne’s amyloidosis had recurred, necessitating another round of chemotherapy. Unfortunately, this treatment had to be halted a few weeks prior due to a serious lung infection.

Throughout all this, Joanne has been staying in Birmingham, separate from her husband of 21 years and their three children, aged 20, 16 and seven. Joanne is set to restart her chemotherapy treatment soon, which will likely take until the year’s end.

“It’s not been easy,” Joanne said. “I just want to go home.”

Against this backdrop, their family home in Bacup — a three-storey property is presently unsuitable for Joanne, who finds mobility challenging and uses a wheelchair. Currently living at her mother’s house and sleeping on the sofa, Joanne is aiming to raise funds for installing a stairlift in her own residence and other necessary adjustments, including for 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.