Toby Pettifor of east Sussex gave his Dad and brother a shock when he collapsed in hospital, but despite a history of PH in the family, he has not been abashed and remains extremely positive. Here he tells his story…

“My name is Toby Pettifor. I am currently working in retail management. I have always loved my sport and music from a very young age. And in the later part of my life I have added socialising to that list.

I was diagnosed with pulmonary hypertension in 2012 and my deterioration was dramatic. I went from being able to push myself in the gym – 30 minutes on a cross trainer in the summer – to not being able to walk up small hills in the winter.

I had quit the gym late that summer, and being a typical stubborn man I refused to think that there was anything wrong with me, I just put it down to the fact that “my fitness has gotten bad after quitting the gym” but things only got worse.

It took my father, Roly, forcing me to go to the GP at Quayside Surgery in Newhaven, which kick started my diagnosis. They did an ECG took one look at it and said that I needed to go to A&E at Royal Sussex County Hospital who admitted me to the hospital’s cardiac wing. One week later, they referred me to the Royal Brompton Hospital. At every stage they were all fantastic it has to be said.

Family matters – brothers Toby and John

So began my time with the guys at the Brompton, they did some more tests and gave me my diagnosis of primary pulmonary hypertension. Which, in a weird way, was a relief because subconsciously I did know something was massively wrong, I was just too stubborn to admit it. You know what us men are like.

But on the other hand it was incredibly daunting, and not just because of what the road ahead would entail, but because my mother also suffered from this condition, and she passed away in 1995 waiting for her heart and lung transplant when I was four years old. But that was because not much was known about the condition and how to treat it back then.

Luckily for me medicine has come a very long way. After my diagnosis and whilst they were deciding which route of treatment they wanted to go down I accidentally forced their hand.

One day on the ward I walked a matter of 20 yards and collapsed, and awoke on the floor to a team of nurses and doctors all looking at me with concerned faces. I always laugh that my brother, John, and father were also there that day and at this moment could only see a load of people crowding around me on the floor making all sorts of fuss. By this point I was fully conscious and joking with the nurses but they couldn’t see that, only my legs, so they must have been assuming the worst. Poor them.

After the hysteria had died down and I was happily lying back in bed laughing with my father and brother about the whole thing, the doctors and specialist nurses came to visit. They explained that it was either the condition or low blood pressure, due to it being a very warm day and I that had been lying down all day.  But we all decided that it wasn’t worth the risk, so we decided to go right ahead with getting me onto the IV pump for treatment.

So I was started on Epoprostenol.  I had a torrid time of it when I was going up in doses, the side effects were not pretty but with the reassurance that the higher I go the better in the long run, we ploughed on. I went up to 20.

My amazing specialist nurses taught me everything about how to care for the line, and how to make up my drugs and quite frankly had the patience of saints. I was due to be discharged soon, but that was unnerving because I had the realisation that all this work the nurses were doing to take care of me, soon I would have to do myself. And so followed a torrent of questions:  “How am I going to do this/that” etc. Then the day came for my release six weeks from the day I walked into my local GP’s practice, which is remarkable testament to all three, my GP’s practice and both hospitals.

But then came the scary part,  which was look after my IV pump and medication myself, but within a few months it became like anything else in a routine, it was second nature and most of that “torrent of questions” you just answer yourself as you get back to normality.

But the really testing part is finding your boundaries. Because I was quite severe, I mean not being able to walk 20 yards, we were contemplating everything: “Was I going to be able to walk up the three stories of stairs in the house?”, “Was I going to be able to go back to work?” So I just took it in baby steps and took it all one day at a time, and slowly built myself back up.

Then it was time to go back to work. The company I work for was really supportive and we built up from a few three-hour shifts per week, gradually back up to full-time.

Since then I have settled back into my old life, and haven’t really found any boundaries. I played competitive football, although didn’t push myself too hard. I have flown to Canada and went on a stag do to Lanzarote. I have got a promotion at work, and am looking for my next one, hopefully sometime this year.

Toby (front) with friends and brother John (centre)

Just recently my line got infected, and back at the Brompton they took it out, and before they put in my new line they talked about the possibility of me going on to oral medication and coming off the pump, which again got me thinking about my life and my capabilities. In the end, I decided that the pump has enabled me to get back to my normal life, and has done me the world of good, given me confidence beyond belief.

Looking back, if I hadn’t of had that fall in hospital, we probably would have gone down the oral route first, so, in a weird way, I am thankful for that fall because it forced our hand to go on to the pump. And I am thankful for that, because although at the beginning it was a lot to get my head around, the confidence and quality of life it has given me is incredible, not to mention the wonders it has done for my heart. And I can truly say that I own my condition, not the other way around. Thank you to all the team at the Brompton, especially Carl Harries and Lisa Parfitt, also my family, especially my father Roly, who have all just been amazing in making it so easy to adapt and for their continued support. And also you beautiful lot for reading my story.