Treading the PH path together

KELLY: “I had symptoms for a good couple of years. Doctors thought it was asthma and we went through a long process of changing different inhalers, using steroids, and nothing really improving. I was progressively noticing that I was unable to do things without getting stupidly out of breath and really tired. I couldn’t walk up the stairs indoors, and I felt like a 90-year-old.”

CHRIS: “It was quite frustrating that we couldn’t pinpoint what it was. Kelly just wasn’t herself. It was hard for the kids as well because it did stop us doing things. Every time we went out, I thought she was going to pass out. It was really hard. I was looking up the symptoms on Google, wondering is it lung cancer? Are there other things that are seriously wrong that doctors aren’t picking up on?”

KELLY: “I’m a medical secretary and I work in a GP surgery, so one day, when I was feeling particularly unwell, I asked one of the doctors to check my oxygen levels.

It was pot luck that she had heard of PH, because she knew someone else with it. So, after seeing my oxygen results, she decided to do an echocardiogram (ECG) on me there and then.  The readings were so abnormal that she sent me straight to my local hospital.

I was there having tests for ten days, and was then transferred to the Royal Brompton, where I had more tests before being given my diagnosis in October 2022.  It’s weird, it was such a relief to get a proper diagnosis, but it wasn’t the answer that I wanted. It was very bittersweet.”

CHRIS: “The PH team at the Brompton were great and they were happy to talk to me as well as Kelly. I did call the nurses a couple of times for a chat, and I felt better every time I spoke to them. But it was a real roller coaster at that time, and it was very hard for us both.”

KELLY: “The treatment has made a huge difference and I’m like a different person now. I’m on sildenafil and it is great entertainment knowing that it is also Viagra! I’m also on ambrisentan, and I’ve just recently started on Selexipag.

I have so much more energy and get-up-and-go. I can go out and walk now, even though I still struggle with hills, and I find my body recovers quicker.

It has made me want to do more things because before I couldn’t be bothered to do anything as I felt tired and was embarrassed of how I would look to other people. The treatment has been a game-changer really and I’m still able to work three days a week. My employers have been so understanding and flexible.”

CHRIS: “My employers, Intuit QuickBooks, have been superb through all of this too. While Kelly was in hospital, they offered family support days, so I didn’t have to take holidays. And I have health insurance through work, so I’ve been able to access counselling, which has really helped through this time. As my partner, it’s open to Kelly too if she wants it.”

KELLY: “Going through the last year has put a lot of things into perspective for us. It’s made us realise that there’s no point worrying about small things, and the focus should be on getting more enjoyment from life. We do so much more now.”

CHRIS: “That’s definitely a positive that has come from all of this. I think we have a lot of appreciation for each other too, and we’re better at accepting help from others. Our family and friends have been amazing.”

“Looking back on the last year, my advice to anyone recently diagnosed with PH is to trust your specialist team. I’ve got full trust in them, and I’ve made good use of all the PHA UK resources out there too. Do not use Google, just concentrate on the information PHA UK gives you because it’s spot on, and very informative.”

“My message for partners and relatives would be to use the help that’s available. When we found out only 8,000 people are diagnosed with PH, we wondered whether there would be much of it out there. But the support, from the Royal Brompton and the PHA UK, has been unreal. You are not alone.”

Pictured above: Chris, Kelly, and their children.