I put on 30kgs just to stay alive after 100 hospital stays in 5 years – doctors brushed me off as ‘just anxious’
A FORMER ballet dancer defied death after her doctors dismissed her asthma for “just anxiety” at least “100 times”.
Katie’s asthma was so severe that it completely dominated her life.
The now 23-year-old was forced to give up dancing, her dream of becoming a nurse and her social life after the disease almost killed her 50 times.
She has since developed suspected post-traumatic stress disorder (PTSD) over fears that she could have a life-threatening attack at any moment.
“There’s only so many times you can stare death in the face without it playing with your head,” Katie, an admin assistant, said.
“Being told repeatedly by doctors that you’re being anxious when you’re fighting for your life is pretty devastating,” she added.
Katie reckons medics have dismissed her asthma as anxiety “at least a hundred times” over the past five years.
“Doctors kept dismissing my symptoms, even when I was incredibly unwell. I felt so unseen and unsupported,” she explained.
Katie’s battle with asthma began suddenly in her early teens after an active, carefree childhood.
“My diagnosis came as a real shock as I’d never had any health issues, and I was devoted to my ballet, contemporary tap and gymnastics classes.
“But suddenly, I found it so hard to breathe. I carried my reliever inhaler everywhere and could never relax.”
For Katie, who has two younger siblings, her whole life seemed to change in a heartbeat.
“There was definitely life before asthma and life afterwards,” she said.
As her teenage years progressed, Katie was forced to give up “everything she loved” because of asthma.
Too unwell to continue with her beloved dance classes, just getting an education suddenly became a struggle.
“I started my A levels three times and had to keep giving up as I was in and out of hospital so often,” she recalled.
On the third attempt, Katie made the bold decision to move a hundred miles away to the Norfolk coast, where she thought the sea air would allow her to get a fresh start.
“Traffic fumes are a real trigger for my asthma, and I thought less air pollution would help,” she said.
Sadly, within three months, she’d had to drop out and was back living with her parents, as she almost died three times from asthma while she was away from home.
My world just kept getting smaller and smaller
Katie
It was around this time, at the age of 19, after repeated and often terrifying emergency hospital admissions, that Katie was told she had severe asthma.
An estimated 5.4million people in the UK have asthma – about one in every 12.
The condition affects people of all ages but often starts in childhood and can make breathing difficult.
It is caused by swelling of the breathing tubes that carry air in and out of the lungs as a reaction to triggers, including allergens and pollution.
Up to five per cent have it severely, which can result in breathlessness, chest tightness and a cough, as well as repeated asthma attacks, which require frequent hospitalisation.
People with this form of the disease are more vulnerable to having life-threatening asthma attacks.
Katie can’t say for sure why she developed asthma so suddenly, although she believed hormones were to blame as her symptoms would emerge at certain times of the month.
“We need more research to understand why women are at double the risk of dying from asthma than men,” she insisted.
“Scientists know hormones play a part, but they aren’t quite sure why.”
GIVING UP DREAMS
Katie was studying for access to a nursing course from home when she received her ‘severe’ asthma diagnosis.
At the time, she kept having repeated asthma attacks.
Eventually, it became clear to her that she could not go to university and become a medic.
“All my life, I’d dreamt of being a paediatric nurse,” she explained.
“But how could I take care of anyone else when I was so ill myself? There was no way I could have coped.
“Every cold and virus that came onto the ward would have completely floored me.”
Devastated, Katie was forced to give up on one dream after another.
“I was too scared to leave the house by myself in case I became seriously ill,” she said.
“My world just kept getting smaller and smaller.”
Nights out, weekends away, and even brunch out with friends were all completely out of the youngster’s reach.
It wasn’t just her own life that asthma was affected, either.
Katie’s mum made the difficult decision to give up the job she loved in a pre-school for fear of passing any germs on to her daughter.
On top of this, the life-saving steroid tablets the young woman needed to help her keep her asthma under control caused her to pile on 30kg .
“Those drugs are vital, but I hated the way I looked,” says Katie, who has since lost the excess weight and now only needs to take steroids during a flare-up.
“I just didn’t look or feel like myself anymore,” she added.
HOPEFUL FUTURE
After years of monthly hospital admissions and panic, life has calmed down a little for Katie in the last 12 months.
Desperate for some degree of normality, she has adopted a mini poodle.
The pooch, named Oscar, is a medical alert dog who barks when he notices her symptoms are worsening.
“He’s been a game-changer,” she said.
“I no longer have to rely on other people to go everywhere with me.”
What are the symtoms of asthma?
Most children and adults with asthma have times when their breathing becomes more difficult.
Some people with severe asthma may have breathing problems most of the time.
The most common symptoms of asthma are:
- wheezing (a whistling sound when breathing)
- breathlessness
- a tight chest – it may feel like a band is tightening around it
- coughing
Many things can cause these symptoms, but they’re more likely to be asthma if they:
- happen often and keep coming back
- are worse at night and early in the morning
- seem to happen in response to an asthma trigger like exercise or an allergy (such as to pollen or animals)
See a GP if you think you or your child may have asthma, or you have asthma and are finding it hard to control.
For more information on asthma and triggers, and to download an asthma action plan, visit www.asthmaandlung.org.uk or call the charity’s helpline on 0300 2225800.
Source: The NHS
Getting back some independence has been a huge boost for Katie, who has started working as an administrative assistant at a local school.
Another huge step forward has been getting the right medication for her asthma.
In October, after a long wait, Katie began receiving monthly injections, known as monoclonal antibodies.
These anti-inflammatory jabs can be revolutionary for people with severe asthma as they dampen down airway responses to triggers.
In the last six months, Katie has only been hospitalised twice, once after coming down with a couple of colds last winter.
“These drugs have changed my life, but they need to be more readily available,” she said.
“Having to struggle for every breath is exhausting enough without having to fight for better treatments and care too.”
Biologic treatments for asthma are only available to people who have been diagnosed with severe asthma.
You need to be referred to a severe asthma service before you can be considered for one.