It’s been two years since Kate Alsford was diagnosed with idiopathic pulmonary arterial hypertension, and she’s learning to adapt to life with the disease.  Here she shares her challenges, her gratitude, and her advice to others at the start of their PH journey.


“I was working on a beauty counter when my symptoms began. There was a lot of standing up and moving around and I had to climb three flights of stairs to get to the toilet and staffroom.

I started noticing I was having to stop halfway, while other people I worked with passed by. I’d be so tired, I’d have to sit down on the stairs, and it got really embarrassing. I just assumed I’d become unfit.

Things to started to get really bad and I noticed my mental health was really declining. I kept thinking, why can’t I breathe properly? What is happening to my body?

I went to see my doctor a few times, and at first they thought it was anxiety, so we tried a talking therapy and they suggested antidepressants. Then they said it was probably asthma, and gave me an inhaler, but things just got worse.

Getting appointments was hard through the COVID-19 pandemic, and I couldn’t believe how much the symptoms were affecting my life. They were affecting my relationship, my friendships, and my ability to be a mum to my children. Sometimes the breathlessness made me feel like I was choking to death. Things were becoming increasingly hard.   

In 2021, my doctor finally did an ECG, and he could see my heart rate was very high, even though I was just sitting down. He told me to go to A&E, and I started panicking.

They did every test under the sun there, and I was sent home with a referral to the cardiology department. I went back and forth a few times through that winter of 2021, because they didn’t know what it was.

I just felt awful. As soon as I’d dropped my daughter at school, I would have to lay in bed all day, and my mental health was so bad. It sounds very dramatic, but I actually felt like I was dying. I was so depressed.

Luckily, I was eventually transferred to the PH service at Royal Papworth Hospital, who did a right heart catheterisation which showed my pressures were really high.

It was all a bit of a rush then, and I was told I had pulmonary hypertension and a massive bubble of fluid around my heart. I’d gone into heart failure, and I felt instant panic.

I kept saying, why me? I’ve never smoked in my life, I’ve always been into fitness, and I just couldn’t believe it. I was expecting the worst.

It’s been two years now and I’m slowly coming to terms with it. I’m getting there.

I’m so, so lucky and grateful to have such an amazing family. It was such a worry for them when I was diagnosed, and they still worry now. I’ve got a really nice group of friends who have all been really understanding and I’m so lucky to have them and my family. (Kate is pictured below with her brother and sister).

It is still tough though, and there are still times now that I need to cancel plans. I’m at home a lot, and if we go on little trips I have to make sure I’ve got my mobility scooter. So life’s really had to change, and I’ve had to adapt to what I’ve got, but I’ve been lucky in terms of the support I’ve had.  

I’ve got two children, aged 13 and 18, and I do feel my role with them has changed massively through my illness. I’m not able to do the things I used to do with them, but I do also feel lucky that because I had them when I was so young, they’d grown out of being toddlers by the time I became ill. I’d never be able to run around after toddlers now.

My children are very supportive, and my daughter especially helps me all the time. But it’s hard not to think about when they are older. It’s scary and it all does impact my mental health.

If you look at me, you wouldn’t think there was anything wrong with me, and that’s the problem with invisible disabilities. It’s a daily task looking fine, but knowing that inside, you’re not. But I get lots of support from my specialist PH team and palliative care team, who are unbelievable.

Based on my experiences, the first thing I would say to someone newly diagnosed with PH is that the internet is not your friend. Don’t Google, and don’t overthink things too much. Put your trust in your PH team as they will help you through everything.

PH is rare, and that’s scary, but I’ve made friends with a lot of people in the PH community through the PHA UK Facebook group. I don’t care as much about the little things anymore, and I really appreciate life. You only get one, and you need to live it.

There is so much advice and support out there. It does seem really scary and daunting at first, but have trust, have hope, and take every day as it comes.”

Click here to watch Kate talk about her experiences on camera.