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CAMPAIGN: Harrogate lives ‘put on hold during transplant wait

Deborah Jones has been on the waiting list for a liver transplant for more than a year

Deborah Jones has been on the waiting list for a liver transplant for more than a year

There are 23 people waiting for a potentially life-saving organ transplant in the Harrogate district.

As part of the ‘Advertiser group campaign to raise awarness of those in need, reporter Ruby Kitchen speaks to one of them about the impact it has on their day to day lives.

“Everything changes. Everything is on hold. I used to have a mobile phone, but it was in a box under the bed. Now, I have phones upstairs and downstairs. I can’t miss that call.”

Deborah Jones has been on the waiting list for a liver transplant for more than a year.

For all that time, she has had to stay within a couple of hours of her home. No holidays, no trips to visit family and friends.

“Everything revolves around the phone,” she said. “I miss being able to go into town and just window shop. Going to the movies. Doing something on impulse.

“I have to wait and see every morning how I feel. If it’s a good day I can do something. If it’s a bad day I can’t walk straight.”

Deborah, now 49, has had health problems since she was five years old when doctors noticed she had an enlarged liver and spleen.

Tests were inconclusive but when she was 16 she took a turn for the worse, suffering what’s called an oesophageal varices.

She was rushed to hospital under police escort after she started vomiting blood.

It took a huge blood transfusion - eight pints - to stabilise her, and she was given a ‘portal shunt’ - an operation to re-route the flow of blood around her liver.

Over time her condition, still undiagnosed, settled. But then, 10 years ago, her symptoms started to flare up again.

“I was tired, I had no energy, I felt sick and sore, and had difficulty breathing,” she said. “They put me on medication and I thought I was doing OK.

“Then, in April 2012, I found I couldn’t walk straight anymore.”

She went to the doctors but was unable to answer his questions. She was so tired and so ill she was falling asleep as she spoke to him.

Deborah, of Low Skellgate in Ripon, was sent for tests at Harrogate District Hospital, MRI scans. Then specialists, then neurologists.

When they realised it was her liver she was sent to St James’s Hospital. There she was diagnosed with ‘non cirrhotic portal hypertension and encephalopathy which has caused hepatocerebral degeneration’. What this means is that her liver doesn’t work properly - the toxins it should be removing from her body are instead poisoning her.

“Basically it causes brain damage,” she said. “All the gunk that’s meant to be cleaned by my liver is just running through my system.

“Hopefully it will be reversible but we just wont know unless I have a transplant.”

She was officially put on the transplant list on January 5, 2013. Since that time, she has been waiting for the phone to ring to say an organ is available.

“Everything is on hold,” she said. “I can’t do anything. Every time the phone rings from a withheld number, I’ve got to answer it. It’s always those PPI companies. But I have to hope.”

Deborah had given up her work in credit services when she became so ill she was making mistakes. Then, in December 2012, she was made redundant.

“You sit there, wondering what’s going to happen,” she said. “Will I ever get another job? Will anyone want to employ someone with a transplant?

“I didn’t think I would miss work but I do. Even if it’s just talking to people outside of these four walls.”

Her condition has had it difficult for her to go out often. It’s turned her sleep pattern upside down.

She’s unsteady on her feet, her coordination has gone. Her speech is slurred and she has become forgetful.

“It’s horrible,” she said. “And if I don’t get a transplant, I will end up in a nursing home, unable to do anything. Every day I wait, the worse it will get.”

Deborah, who knows how hard it is to wait for a phone to ring, is now urging others to put their names down on the Organ Donor Register.

“Its a good thing to do,” she said. “You are making something of your death - you’re not gone, you’re still helping other people to live on.

“People don’t think about it until it affects them. But you are more likely to need a transplant than you are to donate.”

n Are you affected by organ donation? Or have you signed up to the Organ Donor Register? Share your story - what prompted you to put your name down and when, along with your age and town or city of residence - by emailing ruby.kitchen@jpress.co.uk or call 01423 707509.

n To join the NHS Organ Donor Register, visit www.organdonation.nhs.uk, or call 0300 1232323.

Read more:

Campaign: Save a life in Harrogate

Campaign: Lifesaving importance hits home

 

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