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World Kidney Day-Myeloma patient Scott Nunn shares his diagnosis experience

Patient stories // 12th March 2020

Like a fifth of myeloma patients, Scott Nunn was diagnosed with myeloma due to kidney issues. 

Signs of poor kidney health are:

  • thirst
  • fatigue
  • persistent headaches
  • loss of appetite
  • nausea or vomiting
  • changes in urination
  • swelling in the face or ankles
  • shortness of breath

 To help promote World Kidney Day he shares his diagnosis experience:

“2019 was the year that changed my life forever. I had gone through an extremely difficult time with my business, I turned 40, and I was diagnosed with myeloma.

At the beginning of the year, I started to notice signs that something was wrong and I could feel my body slowing down. I had had pain in my back but thought it was just my chronic back condition. I was getting nauseous after lunch, I wasn’t sleeping, and I was having night sweats but because work was busier than ever, I put this down to stress. Then one night, towards the end of July, after a difficult couple of days at work, I ended up in A&E as I was finding it hard to breathe deeply. Six hours later, I came away with more powerful painkillers which just made me even more nauseous. So, I went to my GP and had some blood tests.

Scott Nunn

Scott Nunn

A week later, I had a call from the nurse telling me to come back in, as my kidney function was low. Most people’s kidneys function at around 90% – mine were down to 44%. This was alarming and meant more tests. A week later following another blood test, I was with my partner Tris at Waterloo station, about to go to our friend’s house in the Isle of Wight for the weekend, when the nurse called again. My kidney function had dropped from 44% to 35% in a week. This was not normal. I was told to go back to A&E immediately. Once there, they sent me straight through to the ‘Majors’ department. My blood pressure was sky high, I was nervous, and it suddenly seemed very serious. They put a cannula in my arm and took about ten blood samples. Then I had an x-ray, urine test and an ultrasound. Everything looked normal, but my kidney function was at 33%. They had no idea why. They agreed to let me go to the Isle of Wight, provided I was at the kidney unit of Guy’s Hospital by 10am on Monday.

Over the weekend my kidney function had gone up to 40%, and although they were still unsure what was wrong, the kidney specialist seemed pleased but wanted to see me again in a month.

I felt a rush of relief. Maybe I just needed some good sleep, no painkillers and the right food and I’d be fine. But a week later the haematology department at Guy’s Hospital called. They wanted to see me and they were booking me in for a PET scan and an MRI. I had no idea why and found myself in the haematology consultant’s room that Wednesday morning, desperately trying to stay calm. How was my kidney function related to haematology? And then that word – cancer.

‘I’m sorry to have told you so bluntly,’ she said. ‘But we need to press on with the bone marrow biopsy and treatment as soon as possible, and there is good news. We can’t cure myeloma but we can treat it. This is definitely not a terminal diagnosis.’ She actually did a brilliant job of explaining it all. Right now, I’m finishing my six months of chemotherapy and will have a month off all drugs before I go into hospital for a stem cell transplant.  The good news is that I have been responding very well to the chemo. My light chains have gone down from 4,800 to 33 and my kidneys are up to 69%. It’s fair to say I’m nervous of the next steps and the months ahead. But I know that I am in the best hands with the NHS and I’m taking it day by day.”

Best wishes to everyone

Scott

Learn more about myeloma kidney disease, including its causes, symptoms, treatment and management, as well as advice on living with myeloma kidney disease by reading our “Myeloma and the kidney Infoguide”.