“I was just exhausted. I had no idea what was happening to me”

Nina Meinzer

PAH Patient

As a scientist and a dedicated martial artist, living in her then hometown of Exeter, Nina Meinzer was busy leading an active, healthy and fulfilling life when the diagnosis of pulmonary arterial hypertension (PAH) stopped her in her tracks.

“Living in Exeter, it’s a very hilly place and just walking to work became impossible for me. I used to throw up on the way to and from work – that became everyday life.”

“If I travelled on holiday for instance, I was just exhausted. I had no idea what was happening to me.”

Nina was diagnosed at the age of 32, with the disease having taken hold of her everyday life two years prior to that.

“It started with me getting out of breath from activities I was used to doing. I was playing a lot of sport at the time, but I was getting out of breath at the slightest exertion – which made my coaches a bit worried. No matter how much I did, I wasn’t getting any fitter.”

Nina’s life revolved around the sports she took part in. Brazilian jiu-jitsu and judo both required a high level of fitness, but Nina started to think something was seriously wrong when the warmup to her sessions had her hacking for breath.

It’s like any loss, you have to mourn it. But, if you can, try to replace the things you love with something else that you love. It is possible.

Misdiagnosed with asthma

The diagnosis that spelled the end of her sporting endeavours and changed her life irreparably came only after being misdiagnosed with severe asthma (the first diagnosis of asthma had already happened when Nina was 14 years of age) – as so many PAH patients sadly are.

“Almost all the PAH patients I’ve met have been diagnosed with asthma, but not many actually have it.”

“The asthma treatment was followed by tests for diabetes, which was quickly ruled out. Over the following two years, I reached the point where I was barely able to do anything. When I got a GP appointment he looked at me with my legs all swollen from all the water retention, barely able to walk from one room to another, and he said: ‘you’re going to go home, pack a bag, and we’re getting you to hospital’,” Nina remembers.

“When you’re in your early 30s and present with severe heart failure, they don’t let you out until they know what’s wrong with you.”

When the PAH diagnosis came, Nina was told she’d have to leave her sport behind, and that she would need to be on treatment, to try to reduce the hypertension in the blood vessels in her lungs.

Amateur theatre and a new life in (less hilly) London have allowed Nina to retain her verve for life, with her check-ups reduced from one every three months to just two a year.

“It’s like any loss, you have to mourn it. But, if you can, try to replace the things you love with something else that you love. It is possible.

This feature has been organised and funded by Janssen UK and written on the company’s behalf by Mediaplanet, based on interviews with Dr Luke Howard, an expert in PAH, and Nina Meinzer, a PAH patient. The views expressed here are their own opinions.