Young father Josh Howey lives in Liverpool with pulmonary arterial hypertension and is learning to adapt to IV medication. He spoke to us just six months after being diagnosed, to help others who might be getting to grips with the disease.

Story shared December 2024

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“It all started with shortness of breath, and I was getting more tired doing ‘normal’ things. As the symptoms got worse, I couldn’t take part in the sports I love. My job as a construction worker became difficult and I started to collapse, which is when I went to A&E. I never saw a GP about things prior to that.

I ended up discharging myself twice from A&E because I’m scared of needles, but I got over that fear because I knew I needed tests.

When I got diagnosed with PH, I was relieved because I wanted to know what it was. But it was still a shock. I never thought in a million years that a doctor would say that my heart’s swollen. I knew there was something that wasn’t right, but I didn’t think it would ever be this. I didn’t think it was something serious at all, to be honest.

I’d never heard of PH before and then when I got diagnosed, I found it on my nan’s death certificate and discovered her brother had it too. I’ve had the testing done and it’s come back that mine’s genetic, so it’s been passed through the generations.

I’ve got a 12-year-old daughter (pictured below), and a brother, so I do worry they are going to get it. They are both going to be tested for the genes – I’d rather it was caught early so they don’t have to go through what I have.

I’ve been on IV therapy for two months now. At first, I didn’t want it; I thought I was strong enough just to stick with the tablets. But my specialist centre recommended I change to it, as it’s not been as bad as I thought it would be.

I was a bit panicky at first about having a cable coming out of my chest, having to keep everything sterile, and going through all the steps to make up the medication. I was scared in case I pulled the line, and worried that if something went wrong, I’m two-and-a-half hours away from my specialist centre, and I can no longer drive.

But now I’m used to it all and making up the medication has just become part of my daily routine. It’s frustrating sometimes, don’t get me wrong, but I just get on with it. It’s become ‘normal’.

Although going onto the IV was recommended by my PH team, I ultimately came to the decision myself. The symptoms weren’t reducing on the tablets, and it was winding me up. I was getting really frustrated with family members and friends. I wanted to feel better.

I stayed at my specialist centre (Sheffield Pulmonary Vascular Disease Unit) while I had the training, and I picked things up pretty fast. The specialist nurses training me were really good and it’s not like being taught stuff at school. I get on so well with everyone there, and they got me through.

When I went back home after the training, I’ll be honest, I was a bit scared because it’s so far away from the hospital (I live in Liverpool and the centre is in Sheffield). I didn’t have any of the nurses around me. But after a few days, I became more confident with it all.

I change the IV medication once a day, as soon as I wake up. It’s a routine that works for me, but it’s individual for everyone.

I have more energy since going on to the IV and I definitely have less symptoms. It feels like everything has opened up; I don’t get as breathless or fatigued. I still can’t do what I was able to before getting ill, but it does help a lot. It keeps things at bay.

Obviously, my daughter can see that I’ve got a line, and I’ve just told her that it’s giving me medication that makes me feel better. She’s just a kid so I don’t want to scare her.

I don’t really have to explain it to other people much as to be honest with you, I don’t really go out. I don’t like meeting new people. I’ve got my circle, and I just stick with them. If someone does ask me about the line, or about the illness, I deflect it or make a joke out of it as I don’t like opening up to people.

It’s different when I’m talking to other patients at hospital appointments. I don’t mind speaking to people about the condition who have it too, especially if they have had the IV line suggested to them as well.

I hope that by sharing my own experiences with the PHA UK like this, it will help someone in the same boat who might be struggling.

It is hard at first because it’s not a ‘normal thing’ having a cable out of your chest, but you do get used to it. You can’t even notice it when you’ve got clothes on; I just tuck the cable into the bag, put it underneath my top, and it’s gone. I carry the pump in a little ‘man bag’ and no-one knows what’s inside it.

Showering with the pump is a bit of a task as you’ve got to find something to hook the bag onto, but I tend to put it in the sink. There are different methods in different bathrooms, so if you go to a hotel for example, you’ve got to work out the best place for it. It is a bit tricky, but I like the challenge, so it doesn’t bother me.

I can’t pretend that having PH hasn’t changed my life. I can no longer do certain things that I like, such as cage fighting, snowboarding, and playing football. But if you focus on the negatives, it’ll get to you. I look for the positives. I’m still with my family. I’m still doing certain things. You just get on with it.

The way I have fun now is playing games on the PlayStation, watching TV, and spending time with my little girl. Most of the time it’s just about sitting down and relaxing with the family.

It’s good to spend time with people and that’s a positive that’s come from getting ill – it’s brought me closer to my family, as to be honest, I didn’t really spend much time with them before. I’d always be out with my mates or something, as I couldn’t sit still.

The other positive is that I’ve learned I’m not as fragile as I thought I was before, in terms of needles and going to hospitals. And without the PH, I wouldn’t have met the team at my specialist centre, who have helped me so much.

If you’re struggling with symptoms, or you’ve just been diagnosed with PH, my advice would be to just try your best to focus on what you can do, not what you can’t.”

Pictured above: Josh with best friend Fethi, who supports him with his PH.