Cherie Howie is a reporter for the Herald on Sunday.

A life put on hold until a donor can be found

Fourteen-year-old Imogen would love to be a singer, or a photographer, but before planning a future, she needs a new liver.

Imogen Constantine tells a good dad joke. She loves animals and the environment and walking the hills at Long Bay, where resident cows graze and gaze in equal measure.

In her last year of intermediate school she learned to play the piano so she could sing Adele's Someone Like You in a school music competition.

And she won best performer.

These days she does a soulful version of Vance Joy's pop-culture-laden indie anthem Riptide.

Imogen is bright and mature beyond her 14 years. She has big plans for the future.

First, she needs a new liver.

"I have auto-immune hepatitis and primary sclerosing cholangitis," she tells the Herald on Sunday matter-of-factly, with just a little help on the tangle of medical jargon from her mum, Alexandra.

Both conditions are auto-immune diseases and rare - only about one in 10,000 people is affected by auto-immune hepatitis. Imogen's body is attacking itself and her liver is the target.

The cause isn't known as it can be sparked by an infection or a virus. She suffered giardia at 3, but no one knows what exactly brought on the condition.

She was diagnosed at 7 and has been monitored and medicated since, but life was pretty normal until December last year, she says.

"For the most part it has been pretty easy to live with. It seemed to only get really bad in the past few months. But for quite a few years I was feeling good and didn't think much of it."

Geoff, Imogen, Elsie and Alexandra Constantine. Photo / Greg Bowker
Geoff, Imogen, Elsie and Alexandra Constantine. Photo / Greg Bowker

Yes, there were flare-ups, but nothing too serious, although she knew she might one day have to prepare herself for a liver transplant. That day came in December.

"Last year they said my last scan wasn't so good and I would probably need to start thinking about being put on the transplant list.

"I was really upset. I was sort of in denial. I didn't think I needed it because I felt fine. But this year I've started to feel a lot worse quite quickly.

"It took a while for me to wrap my head around, but my mum and dad supported me."

Alexandra and Imogen's dad, Geoff, are supporting their daughter in more ways than is imaginable.

Imogen is on the waiting list for a liver from a deceased donor, but her parents offered to be living donors for the elder of their two daughters.

Only Alexandra shared their daughter's 0+ blood type. She is undergoing a battery of medical tests and will know within a few months if she is suitable.

Doctors have told her she and her daughter would face a three-month post-op recovery period and her liver will take at least half that period to grow back to its original size.

"Ideally, I'd be the one to take care of her after the transplant, but we've just got to do what we've got to do. You take every day as it comes and take the next step when you can," Alexandra says.

Her daughter describes this ultimate act of maternal love as "amazing and awesome", even if doctors decide she isn't a suitable donor.

"I love her a lot."

The family know someone else could offer to help their daughter but are torn by the enormity of any such request.

You've still got to have a laugh and get on with normal day-to-day activities.
Alexandra Constantine

A living liver donation is dangerous and life-changing and has a long recovery period, Alexandra says.

"I'd be happy for someone to offer but it would be hard to accept. I'd definitely be the first choice [donor] and if I couldn't, my sister has said she might.

"Even then, she's a mum, so that's huge. But, honestly, if the right person came forward and it worked out that would be awesome.

"It's probably the biggest thing you could ever do for someone."

The first step for a potential donor is to contact the Liver Transplant Unit at Auckland City Hospital, she says.

In the meantime, they wait, aware a phone call from the unit could change their lives at any moment.

That means the cellphone is always on.

The Herald on Sunday increases the heart-rate when we first call, displaying a number starting with a three, the same as Auckland City Hospital, Alexandra says.

"Any number that starts with a three, I'm like, 'Is this it'?"

The family, which includes 9-year-old Elsie, can't travel because they would only have a few hours' warning if the liver of a deceased donor became available.

"It definitely feels like we're in limbo.

"I'm a writer but I can't work at the moment and haven't been able to work for over a year because Imogen's health has been up and down.

"I certainly can't commit to anything and I wouldn't expect an employer to take me on when that's hanging over us."

But her daughter's fighting spirit keeps their hopes up.

Alexandra Constantine with her daughter Imogen. Photo / Greg Bowker
Alexandra Constantine with her daughter Imogen. Photo / Greg Bowker

Living with a bung liver half her life hasn't crushed Imogen's sparkle. She takes all the inconveniences in her stride, Alexandra says.

"We used to say to her, 'When you wake up there'll be an ice-block', but now she's Googling everything. She's got her own mind."

But life is getting harder, of that there is no doubt.

It is six months since Imogen went on the transplant waiting list, half a turn of the calendar watching her health progressively worsen.

Imogen doesn't complain - in fact, her mum sometimes has to to scold her for pushing through the pain.

"She can be a bit tough on herself. She'll be walking around and I can see she's in pain and I have to threaten her: 'Lie down right now'."

For Imogen, life has become exhausting and painful much of the time.

"I feel constantly tired and this area around my liver and my chest area feels really large and sort of swollen all the time.

"My spleen is 21cm and it's supposed to be 10cm," she says, without any hint of self-pity.

"I'm used to it. It's nice if I feel good one day. It's hard for me to feel sorry for myself. I hate to feel sorry for myself. I like to be normal like everyone else and pretend that I'm fine."

That's not to say she's never afraid.

"I think to a point I'm scared, but then I'm like, 'Oh, whatever. It has to happen.' It will happen and it will be fine, hopefully, but if it isn't that's okay, too."

Imogen is in year 10 at Long Bay College but has missed about half the school days this year.

Other teens might dream of life outside the classroom, but she can't wait to get back.

"I'd like to be able to go to school every day, to socialise.

"After [the transplant] I really want to get out there and do stuff like bike-riding and being more active. There are lots of things I want to do.

"I keep thinking, 'I can't do it now, but I can think about it and plan it'."

Dreams aren't restricted by ill-health. Her biggest is to be a singer.

"I just like the way singing makes me feel."

I hate to feel sorry for myself. I like to be normal like everyone else and pretend that I'm fine.
Imogen Constantine

But as someone who knows better than most that life can land some hard knocks, she is also realistic.

"Of course it would be cool to be a singer but I don't see that happening. But I would love to travel and be a photographer. I think that would be amazing. Or do the environmental science [degree] at Massey."

Her mum found it online. It's "basically a degree in veganism", Alexandra says.

"I think something like that would suit her but she's got to follow her own path."

Imogen also loves nature and walking - the latter without music.

She prefers the sounds of nature.

"I like to just be in the environment." She is also a passionate vegan.

"It's because of all three - the environment, animal rights and it health. I'm passionate about saving the environment and animal rights."

The family pets - cavoodle Sophie and cats Pepper and Tigerlily - are the main recipients of that enthusiasm. Once she has a new liver, well, the sky's the limit.

Imogen will always be someone who has started her life dealing with challenges others might not have to face in a lifetime.

One is knowing that the end of one person's life could be a new beginning for hers. It's something the whole family has to come to terms with.

For Geoff it is "bittersweet".

Alexandra wants everyone to talk with their families about their organ donation choices. Just putting "donor" on your driver's licence is not binding and leaves family having to make a tough decision at a heartbreaking time, she says.

"It's important to make sure your family knows your wishes because otherwise they're in a time of great sadness and probably not thinking straight.

"They're not able to make a decision they might be able to make without all that emotion behind it."

Imogen at her Torbay Bay home. Photo / Greg Bowker
Imogen at her Torbay Bay home. Photo / Greg Bowker

Imogen has found her own way to make peace with the realisation her future may depend on someone else's past.

"It's a confusing thing to wrap your head around but then it's like, well, if they do die, this is what they wanted, and they did die. At least it's something good coming from something awful."

The family is determined not to fall into self-pity. Their younger daughter also has health problems, and they spend enough time in hospital to see many dealt a worse hand, Alexandra says.

"I think we all sort of feel sorry for ourselves at some time and think, 'God, this is too big.'

"But you know you just need to get on with life.

"There are still things to be done around the house, you've still got to have a laugh and get on with normal day-to-day activities. That's what we do and that has been passed on to Imogen.

"There are always people worse off than you and everyone has their challenges. Life goes on."

The long road to recovery

Almost every week in New Zealand last year one person received a new liver, according to information provided to the Herald on Sunday by the Auckland District Health Board.

That number - 48 - was the most in one year. Most years about 40 transplants take place.

The majority of transplanted livers come from deceased donors.

Last year only three living donors gifted part of their liver to someone in need.

All transplants take place at the New Zealand Liver Transplant Unit at Auckland City Hospital.

Liver transplant patients spent on average three months on the waiting list last year, but some have to wait well over a year and sometimes as long as two years.

The transplant involves removing the recipient's liver by cutting ligaments that hold it in the abdomen cavity and clamping all the major blood vessels to prevent bleeding.

The new liver is then inserted and the vessels sutured together. Then the clamps are removed from the major vessels and the new liver begins to receive blood again.

Once the transplant has taken place, recipients are expected to live in Auckland for at least three months. They can normally return to work and normal activities within three to six months.

Live donors recover much more quickly- they will normally be back at work about eight weeks after their operation.

In the case of a living donor, part of the liver is taken and transplanted into the recipient. It takes about six weeks for the transplanted liver to grow to full size, and for the donor's liver to grow back to its original size.

Living donors must be related or have a close bond with the intended recipient.

A thorough medical assessment takes place and they must be in optimum health before being accepted.

The first liver transplant took place in the US in 1963. There were more than 10,000 liver transplants around the world in 2005 and by 2011 there had been 466 in New Zealand.

Recipients must take anti-rejection drugs for the rest of their lives, but many experience rejection symptoms.

Ninety per cent of these can be treated effectively with medication.

About 5 per cent of recipients suffer chronic rejection and might need another transplant.

- Herald on Sunday

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