Doctors told mum she had long Covid before she was given devastating diagnosis

A mum-of-three has bravely shared details of her horrifying health condition that doctors initially mistook for long Covid. Three years ago Joanne Glover, from Bacup in Lancashire, noticed something wasn’t right. At first the 42-year-old just began to feel more tired than usual but then she started experiencing an extraordinary pain in her feet.

Speaking to LancsLive, Joanned explained: “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.”

Concerned, she booked an appointment with her GP who told her it was likely to be long Covid, since she had contracted the illness a few months earlier.

To try and relieve the pain, Joanne was taking painkillers and using a TENS machine, but nothing was working.

Over the next year, Joanne continued to experience more symptoms.

“My eyeballs used to go really really bloodshot red,” she recalled. “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.”

Then, 12 months after her first symptom, Joanne started to vomit blood and she was transferred to Burnley Hospital.

While there she said she was given an anti-inflammatory drug, naproxen, which eroded her stomach lining and she needed to be admitted to hospital. Medics eventually linked the swelling of her feet and ankles and the yellowing of her skin was down to a problem with her kidneys.

She was taken to a specialist kidney hospital and was diagnosed with nephrotic shock syndrome.

But the day before she was due to be discharged, Joanne collapsed on the ward in a “coronary episode”. It was following this that she learnt the devastating truth about her condition.

Joanne was diagnosed with amyloidosis, a rare group of diseases that occur when a protein called amyloid builds up in your body. It can affect organs such as your heart, kidneys, liver, nerves or digestive system and is incurable, according to the NHS.

In Joanne’s case she had an associated blood cancer meaning she needed to start chemotherapy. 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 discovered 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 underwent a six-month course of chemotherapy at a London hospital and was later told she was in remission.

But six months later further tests revealed 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 said. “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 of 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”.

Tests have shown yet more infections and complications. This included severe oesophagitis, recurrent postural hypotension episodes and heart transplant rejection surveillance.

It was also discovered that Joanne’s amyloidosis had returned and she needed another course of chemotherapy. But this was paused a few weeks ago due to a severe lung infection. During this Joanne has been staying in Birmingham, away from her husband and 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.

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

Now the family has set up a Go Fund Me page to raise money for necessary home adaptations which will include a stairlift and new bathroom as Joanne now uses a wheelchair.

Joanne has also documented her journey on social media platform TikTok to raise awareness of the condition.

Symptoms of amyloidosis include:

• Feeling very tired or weak
• Losing weight without trying to
• Shortness of breath
• Swollen feet or legs
• Bruising around your eyes.

If you experience symptoms you should speak to your GP.