“If anything, it’s brought us closer”

Sophie’s story

“Before my diagnosis, the only symptom I had was shortness of breath after walking up a flight of stairs or two. Sometimes it would really take my breath way, and it would take me about five to ten minutes to recover. But I just thought I was becoming unfit.

From my first doctor’s appointment to my diagnosis, it took just eight days. I originally went to my local GP after pulling a muscle in my back after overdoing it at the gym. Whilst there, I mentioned that I was struggling to breathe when using stairs and walking long distances. He examined me and came to the conclusion that this wasn’t normal for a relatively fit and healthy 24-year-old.

So, he referred me to my local hospital for a scan and some blood tests, and from there it all escalated. I eventually got transferred to the Royal Brompton in London for further testing, where I finally got my diagnosis of PH.

I had never heard of pulmonary hypertension before, but I was relieved that I finally had a diagnosis and I could go home! I hated being stuck in hospital. It was the first time I’d ever been admitted. 

Alex was with me when I was diagnosed and was by my side every day. She would travel up from Milton Keynes by train and then travel back home that evening, to do it all again the next day. We’ve been together three years now, after meeting on social media, and have lived together for over two of them.

I’ve only had to make very minor changes to my everyday life. I don’t go up and down the stairs as often as I would; if I need something from upstairs, generally Alex will go for me. Some house chores such as putting the bins out and carrying shopping has had to stop too. I’ve also had to make some changes at work – I’m a waitress, and I now do shorter shifts, and don’t replenish stock as that entails heavy lifting. Luckily, my employers have been very supportive. Alex has been there for me every step of the way. She took some time off from her job as an emergency ambulance dispatcher to be with me when I was in hospital and I couldn’t have asked for a better partner throughout all of this.

We take every day as it comes and live life to the fullest. Fortunately, my symptoms don’t restrict me at the moment but I know later in life they will, so we spend more time with each other, going places and spending more time with family, who have been so good to us too.

Even though they live far away, everyone has been there for us both. If we need anything they’re just a phone call away. At first, my grandparents found it very difficult, but I think that’s because they didn’t understand what was happening. However, once we spoke to them properly and explained everything, and gave them the good news that I’m a responder and should respond well to treatment, they were okay and dealt with it. 

My mum has also been really good and was there most days with me in hospital as well. I couldn’t have got through it all without her either.”

Alex’s story

“To be honest, when Soph first started experiencing shortness of breath I wasn’t that worried. Just like her, I thought she was just getting unfit.

I was devastated when she was told she had PH. Her consultants threw multiple different possible diagnoses our way in the beginning, so for the first week in hospital we had no idea and were a bit oblivious to how serious it was. When they finally

came back with a definite diagnosis of pulmonary hypertension I cried my eyes out. Thankfully the specialist nurses and doctors at the hospital put my mind at ease and told me that although she has this very serious and rare disease, they’ve caught it early and she should respond very well to treatment. 

Before the diagnosis, at home Sophie would put the bins out, change cat litter, cut the grass and so on. But now, so she’s not over-doing it and putting strain on her heart, I do that for her. If she ever forgets something upstairs, so she’s not going up and down the stairs unnecessarily, I’ll go. It’s just the little things around the house that I took for granted before, that I now do.

I think that, if anything, Soph’s diagnosis of PH has brought us closer together. When someone you love gets ill, it reminds you just how much you care and adore them, and how you would do anything for them. When Sophie was in hospital and first diagnosed, she told me she would understand if I didn’t want to deal with it and left her.  But I told her that was silly. She’s stuck with me. Forever.  Luckily, I have an extremely close and supportive family too. Even though both my parents live in different countries, they are always there at the other end of the phone – no matter what time of day or night. I’m also close with Sophie’s family, and her mum especially has been a massive help and support to us both during everything.”