Patient Voices #BreathlessNotVoiceless

Asha Sagoo

“My journey to diagnosis was not an easy one”

Even after a crisis admission to hospital, Asha Sagoo from Leicester had to fight to find out what was wrong with her.

“My journey to diagnosis was not an easy one. I’d been coughing and getting breathless since February 2014 but I just assumed it was due to me getting old, putting on weight and lack of exercise.

Nevertheless, I underwent various tests at my local hospital but nothing was detected. Consultants thought it may be due to a lung infection called sarcoidosis, however I was lost in follow-up and this was never treated. I just assumed I was on the waiting list to be seen.

On the morning of 21st December 2015, I felt severely breathless, fatigued and dizzy, and I couldn’t get out of bed.

When I tried, I realised I wasn’t going to make it – shivers ran up from my bottom of my legs and although I wasn’t in any pain, my oxygen levels were dropping and my body was shutting down. The only thing I could vaguely remember was the sound of my children playing outside my room, all excited about the Christmas holidays.

Just before collapsing on the bed I managed to whisper a call-out to my then eight-year-old son Ryen, who ran in and somehow managed to phone his dad at work, and then an ambulance, telling them that mummy wasn’t very well.  By then, I had passed out.

My kids were terrified. I was put on an oxygen machine in the ambulance and as they were driving me away I managed to get a glimpse of them through one eye – my son’s face had gone pale white like he’d seen a ghost, and this is an image that will haunt me for the rest of my life.

Tests at Leicester Royal Infirmary revealed I had a substantial blood clot very close to my heart, which was too dangerous to operate on, so I received blood thinning injections and was hooked up to oxygen and a heart monitor.

For two weeks, I wasn’t allowed to move off the bed in case the clot burst or travelled anywhere else. My children spent their Christmas holidays visiting me in hospital every day.

On 5th January 2016, I was discharged from hospital but my symptoms continued.

I couldn’t climb my stairs anymore at home, my coughing increased dramatically and I couldn’t even find the energy to shower or wash my hair. I also put on a lot of weight from fluid retention in my ankles, face, feet and tummy, gaining 1.5 stones over two months. I couldn’t even lift my legs to put my trousers on.

Finally recognising something was wrong, my respiratory consultant referred me to the PH centre at the Royal Hallamshire Hospital in Sheffield, where I was quickly diagnosed with pulmonary hypertension.”