IZZY SHARES HER CTEPH STORY...

“It was frightening knowing there was something wrong but not knowing what it was”

For student Izzy Scott, the road to diagnosis was long and frustrating. She shared her story during PH Week to help people understand more about Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and the operation that saved her life.

Izzy with a photo of the clots that were removed from her pulmonary arteries

Ispent a year going back and forth to my GP because of breathlessness that kept getting worse. I was out of breath walking across my university campus, and I would have a tight chest that was painful too. I just couldn’t get oxygen in.

I was diagnosed with asthma, so I went through all the inhalers, and all this time I was getting more and more breathless. People started to notice how often I had to stop, even walking on flat surfaces.

I was then told by my GP that it wasn’t asthma, but that it was all in my head - and it was anxiety and stress causing my breathlessness.

I carried on with things as best as I could. But my lips started going blue after I climbed the stairs, I started getting palpitations, and it got the point where I couldn’t even put my socks on. Even standing up and cooking would exhaust me.

It was frightening knowing there was something wrong but not knowing what it was. I was getting worse, but had no idea why, and my GP didn’t seem concerned.

In December last year I went to visit my parents and they saw how exhausted I was just going to the toilet, so they insisted I saw an out-of-hours GP there and then.

A blood test showed I had clots and a chest x-ray showed my heart was enlarged. I was admitted to my local hospital and then transferred to a specialist centre where I was diagnosed with CTEPH.

I had never heard of it before. On the one hand it felt like a weight had been lifted to finally have a diagnosis, and confirmation that it wasn’t all in my head. But on the other hand, it was scary.

The option of a pulmonary endarterectomy (operation to remove the clots) was discussed, and I was told it was major surgery, but that it would give me a chance of a ‘normal’ life. I had no reservations, as I didn’t want to spend my life feeling breathless.

I was in hospital for three weeks before being discharged for Christmas and managed to carry on studying before my surgery in August this year.

I had time to come to terms with what would happen during the operation but because of COVID-19 visiting restrictions, I was totally alone.

I was on my own in the hospital for three days before the surgery and it was really hard thinking that if I didn’t wake up, the last conversation with my family would have been via FaceTime.

The surgery went well but I stayed in hospital for three weeks afterwards because I had a brain bleed. I cried when I went outside for the first time to breathe the fresh air and feel the sun. On a walk after her op

"I am always wondering how different things may have been if it had been detected earlier"

Recovery has gone well and it’s insane how much better I can breathe now.

I want to raise awareness of CTEPH because I had no idea of what it was before it happened to me and young people especially are not always aware of what could happen. It’s a complicated condition to explain to people.

I am always wondering how different things may have been if it had been detected earlier. Would it have got to the point of needing surgery?

I went through a year of going back and forth with my GP and even after diagnosis I still encounter medical professionals who don’t know what it is. I understand it’s rare, but it can kill people. Ultimately, my operation saved my life.”

Izzy appeared on the Channel 4 show Steph’s Packed Lunch and BBC Radio York to talk about her experiences. Her story also made the Daily Mirror, Daily Star and the front page of her local newspaper.