The cystic fibrosis drug Nicole Adams feels could 'save her life' has arrived at Belfast City Hospital - but she is too sick to take it.
Plucky as ever, the young hairdresser told Belfast Live she is fighting is fighting to get Symkevi and be “home for Christmas with her family” after contracting flu in hospital.
The 28-year-old Newtownabbey woman was admitted in November after her lung function dropped to 20% and got so ill doctors wanted to admit her to intensive care.
But brave Nicole refused and has now been fitted with a feeding tube in a bid to boost her weight as she battles on.
She told Belfast Live from her hospital bed yesterday afternoon: "I’m trying so hard to be positive but this morning I had a panic attack.
"I just hit breaking point, but I’ll be fine. I haven’t had a temperature in 24hrs.
"Symkevi has been here from Monday but I can’t take it yet as a lot of the known symptoms are tightness of the chest, head aches and nausea, which is what I have been having up until now so they don’t want to start me on it and not know what’s making me feel rotten, plus I’ve caught the flu from someone in here.
"I’m just trying to stay positive so I feel well enough to get the drug despite the many setbacks - I have tried not to dwell too much on them."
"I have had a feeding tube in a few days, it is OK, but was a terrible experience," she added.
"My goal is to get this drug before Christmas so then I can at least spend it at home with my family after having to cancel the holiday plans me and Ciaran had to spend it chilled out in the sun after the terrible year we've had."
Nicole, whose lung function dropped as low as 13% before she caught flu, has also seen her weight fall from 49kg to 46kg (around 7st).
But she is not giving up and said the help and support of those around her is helping.
"I'm just so thankful, I honestly just can't believe people's kindess. I'm just one small girl that plodded along in life and to have that much support I'll never forget it, from the bottom of my heart thank you," she added.
"The support of all the nurses and doctors that I've had over these weeks is second to none, some have gone completely above and beyond bringing in things from their own home and spending their own money on treats for me."
Nicole, who was first admitted to Belfast Royal Victoria Hospital in November has now been at Belfast City Hospital for 19 days.
She says Symkevi could 'save her life' and give her a boost as she waits for "the main contender - Trikafta".
"That's what I'm aiming for once I have started Symkevi," she explained.
The triple combination drug, which is made by US drug firm Vertex along with Symkevi and Orkambi, can treat 90% of people who have CF but is yet to be approved for use by the European Medicines Agency (EMA).
Former World Champion boxer Ryan Burnett has donated a huge sum to an appeal to help Nicole get the drug, which is not yet available on the NHS.
Her partner Ciaran McVarnock has warned that anyone now visiting her must wear a mask.
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