Patient Voices #BreathlessNotVoiceless

Chris Johnson

“My wife used to find me sitting on the floor with tears running down my face”


Chris Johnson from Barnsley in South Yorkshire faced upset and frustration during his two-year journey to diagnosis.

“I was experiencing symptoms for at least two years before I was diagnosed.

I was getting more and more breathless. I kept going to my GP and they kept giving me asthma inhalers. Every colour you can get, I had. And when I told them they didn’t work, they just said ‘well, they’ve got to work’.

It was getting so bad that I was having to go upstairs on my hands and knees, and on my behind coming back down. I couldn’t do anything, and I was going downhill fast.

My wife used to find me sitting on the floor with tears running down my face because I couldn’t do anything. It was upsetting and frustrating because it felt like every time I went somewhere I was told there was nothing wrong – and there clearly was.

It was my wife who insisted on a second opinion, and eventually I was referred to Leeds General Infirmary. I had a scan and the doctor knew what was up straight away as luckily, she had been training with a PH specialist in Sheffield.

I had no idea what PH was. The doctor explained it, and explained the treatments options (including transplant) and she was very blunt actually – she said if none of those worked, I would die. We did appreciate her honesty though. Even though I had tears running down my face, I was just glad that someone was telling me straight.”