I often get told that I look well even though I am critically ill

Annie was diagnosed with pulmonary hypertension when she was 15 years old. Pulmonary hypertension is when you have high blood pressure in the blood vessels that carry blood to your lungs. She went into heart failure in 2022 and is now on the list for a heart and lung transplant.

Annie, Asthma + Lung UK supporter
Published 29th January 2026

I was getting more and more breathless and was slowly losing the ability to walk long distances. Usually, my walk from the gates to my school building would take around 7 minutes, but the last time I walked to the building it took me 40 minutes.I eventually stopped doing PE at school because of this.

I was so young that no one would believe me

When I told people about my symptoms, no one believed me at the time as I was so young. Initially my parents didn’t believe me either as they thought I was exaggerating my symptoms so I could skip school, which they thought was out of character for me.

I ended up fainting at home several times which resulted in visits to A+E. When doctors would check my heart’s rhythm with an electrocardiogram (ECG), they would find that everything was normal as I had been resting.

My heart was twice the size it should have been

They eventually did an x-ray and found that my heart was twice the size it should be. I was referred to Great Ormond Street Hospital in less than an hour with pulmonary hypertension.

My health really disrupted my studies, I didn’t do my GCSE’s or A-levels. I don’t get out much as I have a lot of hospital visits as I’m under a lot of departments which can be hard.

I'm waiting for my transplant now

In November 2022, I went into heart failure. I was then put on the list for a heart and lung transplant.

I’ve recently started outpatients at my local hospice which has been lovely. They spoke about the many services they offer like counselling, acupuncture and yoga. I think there are lots of misconceptions around palliative and hospital care, but while I’m in this waiting period for my transplant, I think it’s a good next step for my health

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