“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.”