Hayley will fulfil her and big sister Gemma’s Wicked wish

A young woman from Plymouth, who has cystic fibrosis, will be having the ultimate theatre trip this month, in memory of her big sister.

Hayley Wall, 26, who was diagnosed with cystic fibrosis when she was six weeks old, has spent a large amount of her adult life on a respiratory ward at Derriford Hospital. Hayley is now at home, following a long stay in hospital over Christmas, but whilst in hospital, she talked to us about her sister Gemma, what it is like to live with the condition and how it feels to be on the waiting list for a double lung transplant.

Described by Hayley as a great sister and an inspiration to everybody, Gemma, who also had cystic fibrosis, sadly passed away on December 22, 2010 at Derriford Hospital with her close family at her bedside.

Before Gemma died, she and Hayley had wanted to go to London to see the musical production Wicked but unfortunately Gemma passed away before they could go and see it. So when Derriford’s Cystic Fibrosis Specialist Nurse, Caroline Whitton, heard that the popular production was coming to Plymouth, she immediately told Hayley and set about organising tickets for her to go.

Caroline said: “I saw the poster and instantly thought of Hayley and also how fitting it would be in memory of Gemma.”

The theatre trip has been organised through the Willow, a national charity working with seriously ill young adults, aged 16 to 40, to fulfil uplifting and unforgettable special days. The charity have paid for Hayley, her mum, sister Leanne, niece and nan to watch the musical at the Theatre Royal in Plymouth and for them to also have a meal before the performance.

“I’m really looking forward to it,” Hayley said: “It gives me a bit of freedom, as you can get bored of these four walls. I may even paint myself green!”

Hayley is fully aware of the knock-on effect that a trip like this will have on her but she said: “I’d rather be tired but enjoy that day and then rest for two days afterwards than not go at all.”

During her recent stay in hospital when she was on Hexworthy Ward for five months, Hayley described the ward as a ‘second home’. The walls of the side room, which she occupied, were covered in photos of her family, friends, fiancé James and her dog Charlie. She said: “The staff are like family. I’ve been in for five months and they just know me so well now. So if I’m in a mood they just leave me alone.”

Hayley has spent more time in hospital than out over the last few years and prior to that stayed intermittently.

Image of Caroline and HayleyCaroline added: “Cystic fibrosis patients are pretty independent; they mostly self-medicate and take responsibility for their care. Hayley is quite organised and likes to be in control. Staff on the ward have attended training to help them better understand the condition. For example, CF patients who are taking steroids can often look really well and as though they shouldn’t be in hospital, but actually they are still very poorly.”

Hayley and her sister were often in hospital at the same time and were cared for on the same ward at Derriford. Hayley recalls how the two sisters would often sneak into one another’s rooms whilst they were in hospital.

“When we lived at home together, Gemma and I would fight like cat and dog. But when she moved out of home we spent more time together. And when we were in hospital at the same time we were always in and out of one another’s rooms.”

Reflecting on their childhood, Hayley said: “I loved my childhood. Mum wrapped us up a bit but dad always pushed us out to do and try new things. We were never brought up differently from other children.”
Hayley was diagnosed with cystic fibrosis at six weeks old but older sister Gemma’s diagnosis wasn’t confirmed until she was a year old.

“Gemma was quite poorly for the first year of her life,” Hayley explained. “Mum knew something wasn’t right with her and eventually she was diagnosed with CF.

“From my point of view, I didn’t really feel unwell until my first hospital admission at eight years old. I was always running around and having the condition didn’t bother me. I started getting worse at 11, when I was diagnosed with diabetes, and then again at 18.”

At the age of 20, Hayley was very poorly and spent time being cared for on the Intensive Care Unit.

It was at this time that Gemma went up to Harefield Hospital to discuss going on the organ donor waiting list. Upon having her assessment, Gemma was told she had approximately two years to live.

Gemma decided not to go on the organ donor waiting list.

“Gemma panicked about the financial situation and was worried that if she had the transplant she wouldn’t be able to see me due to the infection risk for us both,” said Hayley. “There also wasn’t the same level of help for people back then as there is now.”

Caroline explains: “The financial side of things is something that our patients and their families do have to take into consideration, particularly for their travel to Harefield and their accommodation when they are there. We try to support them where possible and that’s the reason the Jon Paul Oxley Memorial Trust Fund was set up – to support patients so they can go up to Harefield for their assessments.”

Although Gemma decided not to go on the waiting list, Hayley says her sister lived her life to the full. “In the two years Gemma had left to live, she did a lot – she didn’t give up.”

In November 2012 Gemma became poorly and was admitted into hospital and a month later she passed away.

“Gemma also liked to be in control,” recalled Caroline. “She had planned everything for her funeral. She had fluffy pink feathers and roses.”

Hayley added: “We were all requested to wear pink so the men wore pink shirts and we all wore something pink. At my funeral I want everyone to wear a scarf.”

Hayley talks quite openly of death: “Death’s around the corner, I find it easier to talk about. I have a very dry sense of humour so I’d rather laugh about it but Gemma was different, she was more sensitive.”

Image of Caroline and HayleyIn December 2013, Hayley had a scare and her health started going downhill. She said: “I remember saying to my mum ‘I’m ready to go’. Age is just a number. I’m 26 years old and I have done a lot. I love working with toddlers.

“I’ve never had a job so I’ve not known any different but I have volunteered at Toadstool Pre-School. I have achieved NVQ Level 2 and 3 in Childhood Development. I always wanted to be a primary school teacher.

“Despite being in hospital, I’ve done lots to be proud of.”

It was in the same month that Hayley went up to Harefield for her assessment to be placed on the waiting list.

She explained: “I always said no. You can’t make people give up their organs and I didn’t want to be two-faced about it all. We’re all dying and I can’t just say ‘I want your lungs’.

“It is scary; someone has to lose their loved one so my parents can have me. There are loads of people who want a second chance.

“I can’t look into the future. We never talked about it with Gemma. They want to fight for me to stay longer. It was a thing you didn’t talk about.”

Even if Hayley gets the double lung transplant she needs, she will still have diabetes, bowel problems and be prone to infections.

“I will still have CF but the quality of life will be massively better for me,” she said.

Hayley did have one call from Harefield just four hours after going on the list but it wasn’t meant to be.

“It doesn’t feel like I’ve been on the list for nine months,” she said.

Caroline added: “We have relatively small numbers of patients currently awaiting a transplant, although we currently have more than we’ve had before.”

Hayley said: “People wait for that call and they can seem to deteriorate fast but I’m prepared to fight it – I want that control. My life is now in the hands of Harefield.”