Mission: To be a resource for transplant information; to be an advocate for organ & tissue donation awareness; to promote funding for transplant research.
Wednesday, July 10, 2013
My seven-year wait for kidney transplant
“You just hope that phone rings. But it hasn’t rung for 10 years, so I don’t expect it anymore. I don’t wait for it toring.”
For the best part of a decade Lisa Naylor has been waiting for the call that tells her she has a donor match and can ave a kidney transplant.In 2004 she was given a 50/50 chance of surviving when her kidneys completely failed, for two weeks Mrs Naylor was unconscious and her parents were told to expect the worst.
When she woke up on a Wednesday, having gone into hospital on a Tuesday, she thought she had slept there overnight, but she had been out for two weeks.
She did have a transplant from her mother Sharon in 2006, but that failed and since then she has been waiting for a suitable donor to be found.
Mrs Naylor has a rare condition affecting her hormones which only one in every 250,000 people will contract.
The result has been constant treatment and regular dialysis which has restricted her life.
Mrs Naylor trained as a chef at Walsall College and was working part time as a care assistant when her life changed forever, as now she can no longer work.
“It can be a frustrating thing to live with,” the 30-year-old said.
“I try and lead a normal life – I’m an optimistic person. Rather than sit and mope I do what I can.
“My back hurts quite a lot but it’s more using the needles as part of my dialysis. But it’s keeping me alive, so I can’t complain.”
In the West Midlands 654 people are waiting for a transplant, while 152 have died in the past four years due to a shortage of organ donors.
And since April alone, 43 people in the region have benefited from a life-saving transplant.
The figures have come to light in national Transplant Week – July 8 to 14. This year’s theme Pass It On stresses the importance of having conversations about organ donation as well as joining the NHS Organ Donor Register.
When someone who dies is on the register their family still needs to give consent for organs to be taken and 95 per cent of families agree if their loved one is on the list. This drops to only 46 per cent when donation wishes are uknown.
Unsurprisingly Mrs Naylor has found it difficult to understand why many people wouldn’t sign up to become organ donors.
“It doesn’t just change one person’s life, you can donate many parts of yourself to save others,” the Parklands Road, Darlaston resident said.
“If it was me I’d think, it’s no good to me any longer. And it would be a great comfort to a family knowing their loved one has done that.”
Mrs Naylor did have a transplant in 2006, from her mother Sharon, but just three hours later the kidney failed.
That left her mother with just one kidney but, undeterred, her father Mark tried to donate too, before a heart condition prevented him from doing so. Now her sister Tammy is hoping to be the one to end Mrs Naylor’s pain, with tests ongoing as to whether the operation is feasible.
For Mrs Naylor, who is limited to drinking one litre of fluids a day, her frustrating wait continues.
“It wasn’t my fault that I got this,” Mrs Naylor, who married husband Mark last year, said.
“I had savings and a big future when I was 20 – I wanted to spend it on a mortgage but it had to go towards this instead.
“If people ask what I do and I tell them I don’t work, well they shouldn’t judge me, but they do. As soon as I’ve had my transplant I’ll be out working. And I’ll be able to have children too. It’s something to look forward to.” The serious lack of organ donations mean 1,000 patients die needlessly every year.
The purpose of the week is to raise wider public awareness to the problem and make a change in attitudes.
Nearly 4,000 organ transplants were carried out between April 2011 and March 2012 thanks to the generosity of 2,143 donors.
A further 3,521 people had their sight restored through a cornea transplant.
The Welsh Assembly has changed the law so that people have to opt-out of donating organs at death to boost the number of transplants, due to a desperate shortage.
It is hope the move will see donations rise by 25 per cent. The new presumed consent system could come into force by 2015.
Around 43 of the 60 assembly members backed the bill, eight voted against and there were two abstentions to the change
There had been some opposition to the changes from Christian groups and from within the Muslim and Jewish communities regarding a so-called ‘soft opt-out scheme’ in the legislation to give deceased patients’ families a say on donation.
To sign up to the NHS Organ Donor Register visit www.transplantweek.co.uk, telephone 0300 123 2323 or text DONATE to 62323.
“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”