Take our advice...

Newly diagnosed with PH? These experts – made up of medical professionals, and patients too – have some helpful words of wisdom.

Dr John Wort

Clinical Lead for Pulmonary Hypertension, Royal Brompton Hospital

“One of the things I always say to a patient who is newly diagnosed, is not to believe all they see on the internet. Don’t always believe Dr Google! Inevitably, you will hear lots and lots of bad things, but what I can say for certain is that during the time I’ve been looking after patients with pulmonary hypertension, there have been massive improvements - using the drugs we have already - in terms of how long patients live and the quality of their lives. There are also new treatments coming through that are really exciting, so I always try to be optimistic when I speak to someone newly diagnosed – and I honestly believe that.”

“There are good days and bad days – don’t give up” Linda

"Listen to your own body, you know it best”

Paula

“Take things one day at a time”

Roy

Dr Mark Toshner PH Consultant,

Royal Papworth Hospital

“There’s a lot of information out there and sometimes it can be overwhelming, so I think my primary advice would be to be clear on who you trust. That may be the team that’s looking after you, or the PHA. Think about how you want to be communicated to. I’ve been a patient myself and I know that we [as doctors] don’t always get it right, but if you don’t tell us then we don’t learn and we don’t know.

The specialist PH service is really good in the UK, and it will be responsive to what you want and what you need.”

“Don’t bottle anything up; talk to friends and family”

Shelley

“Be patient, and if the first medications don’t help, trust the next option might be the one for you”

Tricia

Dr Nina Karia Royal Free Hospital

“It’s a lot to take in when you get a diagnosis, so write your questions down, because when you’re in a consultation and you have all of this information thrown at you, it’s really hard to think of those questions at that point. Stop your physician talking if you need to, let it digest, and seek support – that’s the most important thing I can say.”

“We're all different with different needs, boundaries, circumstances. One person's experience won't automatically be yours. Lean into others for support and understanding but live your own journey”

Jo

“Read everything your hospital gives you”

Chris

“Ask lots of questions and if you are still not sure, ask more”

Isla