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Vanessa’s story

Vanessa, 56, lives in Reading and attends the PH service within the Royal Brompton Hospital. She was diagnosed with pulmonary hypertension in 2005, and lives with sarcoid associated pulmonary fibrosis too.

“With the first lockdown I couldn’t leave the house and I noticed that I was getting slower and feeling more sluggish and breathless. I was finding things more difficult, and I told my consultant I was worried, which is when he suggested I spoke to Katie [specialist physio].

I’ve been diagnosed for a long time and that’s the first time in 16 years that I’ve been referred to a physiotherapist.

It was so good to speak to Katie. She asked me all about my medical history, what I find difficult, what my goals are, and she gave me lots of tips.

For example, I told her I did yoga sometimes and she said that was fine, but that I should avoid certain poses. No-one had ever told me that before. She helped me understand how much exercise I should do each week, and she has referred me to local rehab classes, which I am looking forward to.  

When you see a consultant, I know time is of the essence, which is why they concentrate on the medical aspects, but holistic care is important too. I might see a consultant twice a year, but until now there’s been no-one in-between to help me with getting fitter and stronger, and finding the right form of exercise.

Before I became ill, I was quite an active person. But I was once told by a nurse that I shouldn’t do things like aerobics. I also used to do Body Pump (a group exercise class with light weights) but someone told me I shouldn’t do that anymore either, so I stopped. Katie explained that lifting light weights is fine though, as long as they aren’t too heavy, and I don’t hold my breath. It’s advice like that which has really helped me in understanding what I can and can’t do.

She has given me confidence to do more and helped me understand how much I should be doing. It’s all been very encouraging and getting more active has helped with my breathing and with my day-to-day activities. I used to struggle with the stairs, and I’m not saying I can nip up them now, but it has made it easier.

Because of Katie, I’m more enthusiastic now about being more active and getting out walking.

It’s been so nice to speak to someone who understands my health conditions, and who can advise on specifics for me. In all these years, until now I have never spoken with anyone who had that specialist knowledge about what exercise is right for me.  

It has been such good support and I think everyone with PH should be able to benefit from it.”