You are here

Lisa Hertwig

Lisa Hertwig has a long list of things she’d still like to do.  Travel Route 66, get a motorbike licence, and settle down with a partner and kids.  But for now, the 23-year old’s focus is on getting the double-lung transplant that will save her life.

After being diagnosed with Cystic Fibrosis shortly after she was born, Lisa from Alloa has faced a lifetime of treatment and medication to deal with the condition which means she has difficulty breathing and digesting food. 

Due to the severity of Lisa’s condition, she was put on the list for a double lung transplant when she was just four, but taken off the list again at eight as her lung function started to steadily improve.

Now, as an independent, outgoing young girl, Lisa desperately wants to plan her future.  But with her lung function at around 16 per cent, she has been back on the transplant list since June 2013 and she is waiting for the call that will change her life.

Lisa said:  “Even though I’ve always known a transplant was inevitable, when I was told it was time to list me, it was a huge shock.  It sounds crazy as I’ve lived with my illness all my life and was on the list as a child, but I remember feeling really panicky as I felt I wasn’t ready.  I wanted to make sure everything was sorted before the call came.  Now I am just waiting and desperately hoping.”

Living with Cystic Fibrosis has hugely impacted on Lisa's quality of life, but she’s never let it dictate her life.  She has always been fed through a tube, has had to use wheelchairs and relies on oxygen to breathe, but even as a child, she doesn’t remember missing out.

She said: “I managed a lot when I was little, I played in the playground with other kids, took part in sport and was always out with my friends.  My mum and dad brought me up to be quite independent, so I never relied on others to do things for me.  I just got on with it.”

With regular fortnightly stays in hospital all through secondary school, Lisa had more to cope with than most, but her positive attitude saw her go to college aged 17 and complete an HNC in childcare.   

She said: “I had to work on placement as part of my HNC and it was then I realised that a full-time career as a nursery teacher wouldn’t be possible.  I had to go straight to bed as soon as I came home from work as I was so exhausted.

“I knew it wouldn’t be fair to an employer to employ someone with my health issues, so decided to volunteer at the nursery once I’d qualified, but even doing two days a week became a struggle as I was too tired and unwell.

“Although my lung function had improved as I grew up, I knew things were deteriorating.”

By January 2013, Lisa was on oxygen full-time and had to go to the Freeman Hospital in Newcastle to be assessed.   Since being placed on the transplant list, she’s been dealing with the reality of what the future holds.

Lisa said: “I told the doctors that I wanted to know what’s going to happen, when it’s going to happen.  I want the facts so I know what I’m dealing with.  I’m not a person who likes things to be sugar coated.  I deal better with reality, however bad it may be.

“I’ve even planned my funeral.  I’m positive about things, but I wanted to take any strain away from my mum, dad and brother.  I discussed everything with my mum after it was organised and felt a huge weight off my shoulders. 

My mum was really grateful.”

At first Lisa struggled to sleep as she was scared she’d miss the call, but now got used to being on the list, she’s determined not to put life on hold whilst she waits for news.

She said: “I get a mixture of fear and anticipation when I get a blocked call coming through, but thankfully there have been no false alarms so far. 

“I’m not living my life waiting on the call.  I don’t like staying in, and if I need to take the oxygen and wheelchair to go clubbing, I’ll do it.  Nothing stops me doing what I want to do.”

Lisa believes that talking about organ donation is so important, although appreciates it’s a difficult conversation to have.

She said: “A lot of people fear death so won’t discuss it.  A dinner table conversation about what you want to happen to you when you die isn’t easy, but it could make a huge difference to someone who is waiting.

“I have so much to live for, and getting the double lung transplant I desperately need would mean everything.  That’s why it’s so important people make their wishes known, and join the NHS Organ Donor Register.”

Do you have a story to share?
It could help someone decide to be an organ donor too.
Share your story