Patient reveals torment of living with a 'monster inside me' after being given t

Patient reveals torment of living with a 'monster inside me' after being given transplant kidneys of disease victim
By CAROLINE SCOTT
Last updated at 11:42 PM on 2nd March 2012

Gillian Smart sits with a fat Filofax on her knee and a pink file stuffed full of hospital notes spilling out in front of her. Vital names, dates and treatment protocols are covered with highlighter stickers. Thirteen years as a legal PA taught her to be fastidious about recording everything. ‘You can take the girl out of the office . . .’ she jokes.
Now it’s a way of bringing a semblance of order to a nightmarish situation over which she has absolutely no control.
Gill, 47, was diagnosed with Type 1 diabetes when she was 16. After a prolonged bout of flu a few years ago, it was discovered her kidneys were failing and in November 2010 she had an operation to receive a donor organ.
Five days later, when she was already feeling better than she’d felt in years, two consultant surgeons and the transplant co-ordinator gathered in her room at the Royal Liverpool University Hospital to break some devastating news.
A post-mortem examination had revealed the donor had been suffering a rare and aggressive form of cancer: intravascular B Cell lymphoma. This spreads through the body via the blood stream, but its non-specific symptoms make it extremely difficult to detect. In this case, the donor was a 56-year-old woman who had presented with symptoms suggestive of a brain injury. But by the time the results of her post mortem were available, both Gill and another patient, Robert Law, 59, had already received the diseased kidneys.

Sunny: Gillian before she received a kidney transplant after being diagnosed with Type 1 diabetes
Yesterday the NHS admitted negligence in the case, blaming ‘human error’ by a specialist nurse who had not completed her training. While compensation is yet to be agreed, the agency responsible for the provision of organs across the UK, NHS Blood and Transplant has offered Gill and Robert ‘sincere and unreserved apologies’. This cannot, however, make up for the way Gill and Robert were failed by the NHS.
And what happened in those first few days following her operation is firmly imprinted in Gill’s mind.
‘I was still in pain after the surgery but I felt fantastic,’ she recalls.
I went from a size 12 to a 22. I can't bear to look in a mirror'
‘I could feel the kidney working inside me, it was as if I’d been de-toxed. But I knew there was something wrong. The nurses kept asking: ‘Will your husband be coming in later?
‘When Paul arrived, two surgeons, Mr Hammad and Mr Sharma came in, followed by a huddle of nurses, and told us that the kidney was working, but it had cancer which could be spreading round my body via my veins. I don’t think either of us took it in at first.
‘I kept thinking: ‘I don’t believe you. You’re not serious?’ We’d been so happy. It had been as if all our Christmases had come at once.
‘That night, Paul had to go home and tell our children — Lauren, then 17, and Lewis, 13 — that Mum had cancer. None of the doctors apologised — no one said: ‘We’re so sorry this has happened.

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‘Maybe they were trying to protect themselves, but the nurses looked appalled. I saw one of them stagger as they told me.
‘She kept saying afterwards: “I’m so sorry.” My renal nurses who’d looked after me through dialysis were in tears. They couldn’t believe after the horrendous time I’d had, then such a lucky break with the transplant, something like this could happen.’

Devastating news: Shortly after undergoing surgery Gillian was told she may have been given cancer from an organ transplant

Gill was told she could have the kidney removed but since the cancer cells were already travelling round her body, the best option was to keep the kidney and start chemotherapy. ‘I knew I had no choice because I couldn’t have coped with chemotherapy and dialysis,’ she says. ‘I would not have survived.’
None of this is Gill’s fault, but the guilt she feels over what has happened to her family’s lives is at times overwhelming. Two years ago, the family were living in their ‘dream home’ in St Helens, Merseyside.
Paul ran a successful roofing business, they had a caravan and a fishing boat and there were holidays to Cornwall and the Lake District.
Since then, Paul’s business has folded under the strain of becoming Gill’s full-time carer and the dream home has been repossessed.
On the surface, Gill is composed; her make-up is perfect and she has an irrepressible smile.
‘I’m a good actress,’ she shrugs. But inside, she’s beginning to unravel.
‘Everyone tells me how much they admire my strength and positive attitude, but what keeps me awake at night is not what will happen to me but what will happen to Paul and the children if I don’t win this battle.’
She fishes out a mind-boggling list of drugs from the pink file.
‘I’ve been taking massive doses of steroids, which is why I’m so fat.
‘I know it’s not important, but I look in the mirror and I can’t believe this is me. I’ve gone from a size 12 to a size 22; I cannot bear to see my reflection. The chemo was ‘awful, awful,’ she grimaces. ‘I was so ill, I was hospitalised three times out of the six sessions.’

Surgery: Both Gillian Smart and Robert Law had no idea that going under the knife would leave them at risk of getting cancerous organs
Her feet were damaged by ulcers linked to her diabetes and took months to heal; she now wears splints, so walking is difficult.
‘I can’t help Paul in the house, I can’t even lift a pan because my muscles are so weak.
‘I’m someone who used to go to the gym three times a week. These days I struggle to walk further than the length of the garden path.’
And to make matters worse, cancer and transplant treatment do not go together. The immuno-suppressant drug (Tacrolimus) administered to stop the kidney rejecting and which she cannot stop taking, makes it easier for cancer to spread.
‘I’m really peeved about that one,’ says Gill grimly, and with massive understatement.
Gill had managed her diabetes well until her kidneys began to fail in October 2008. ‘I got flu like everyone else, but I felt terrible’ she recalls. ‘I struggled on, but this wasn’t like anything I’d felt before. I ended up in hospital, on oxygen because my lungs were filling up with fluid.’ Then a biopsy of one of her kidneys confirmed she had chronic kidney failure.
‘A nurse was taking my blood pressure and one of the doctors said: ‘We’re going to use that arm for the cannula [a tube attached to the dialysis machine].’
‘And that’s how I learned I was going to have to have dialysis.’

'Human error': Robert Law discovered yesterday that the hospital responsible for giving him a cancerous organ in a transplant has blamed 'human error' for the mistake
She began the treatment in June 2009: four hours a day, three times a week. She talks about the renal community at the Royal Liverpool as ‘a second family’.
‘The atmosphere when people are dialysing is hysterical,’ she smiles.
‘A renal diet is very restricted but when you’re being dialysed you can eat for those few hours like a normal person and you go mad.
‘We’d order in Chinese — we’d eat everything we craved. At the same time, you’d have very dark conversations with fellow patients you couldn’t even have with your partner.’
Every now and then, an alarm would go off on the unit which meant someone was in big trouble.
‘We lost two people over several months,’ say Gill.
‘People don’t realise what a terrible strain dialysis puts on the body, the desperation to get off the machines is palpable. Everyone is waiting, desperate for a donor kidney.’
Gill was placed on the transplant list in May 2010 and the process of testing family as potential live donors started. Her sister, Lynne, 51, was a close match, but her body mass index was too high for it to be safe for her to undergo the surgery to donate a kidney.
‘Our Lynne joined Slimming World to lose weight and it was dropping off her. But I thought by taking the donor kidney, I’d save her having to go through major surgery.’
Following the discovery they’d been given diseased kidneys, Gill and Robert Law now have regular blood screenings, but Gill feels no one will give them a straight answer to the question: ‘What are you looking for? Rob and I go to haematology and they say: “Your bloods are fine, but if you notice any changes let us know.”
‘We say: “What changes?” And they can’t tell us.
‘Because B Cell Lymphoma is such a “secretive” disease — no one knows what symptoms to look out for, or ultimately, how we’ll know if we’re developing cancer. I feel I am living with a monster inside me.’
Perhaps not surprisingly, Gill is being treated for depression. ‘I am not a quitter but I’ve never felt such despair, I’ve lost my sparkle.
‘I’ve lost my fight,’ she says, her voice breaking for the first time. ‘I’ve a drawer full of drugs and there’s been many times when I’ve thought: ‘I’ve had enough — I’m just a burden on my family.

Treatment: Robert Law had to undergo chemotherapy treatment last year following his transplant
‘The only thing that stops me is the idea of Paul or one of the children finding me . . .’ her voice trails away.
Dr Peter Williams, medical director of the Royal Liverpool University Hospital, has issued a statement stressing that what happened to Gill and Robert is rare — and that transplant patients are warned of the potential risks.
He says: ‘When we received confirmation that the kidneys were suitable for transplant our team discussed options and risks with these patients and obtained their consent.’ After the blunder was revealed, Gill took legal advice from clinical negligence lawyer John Kitchingman, who is a partner at Pannone, a law firm in Manchester — and her old boss. For him the key question was: ‘Was Gill properly advised about the risks before she consented to the donor transplant?
‘Put more simply, would this outcome have been avoided if the system was fit for purpose and everyone running it had done their job properly?’
The response from NHS Blood and Transplant was to apologise.
'The nurses who'd looked after me couldn't believe it'

But could this happen again? Last year, 3,582 organ transplants took place in the UK — 2,404 of them kidney transplants; and 949 of those were from living donors, usually family members.
Yet a national shortage means that every day three people die waiting for a donor organ. The shortage also means donors tend to be older and the risk of organs carrying cancer and other diseases associated with age is higher. Use of ‘high-risk donors’ has doubled from 13 per cent to 26 per cent in the past ten years.
In 2002 former police constable Peter Dickinson, given ‘weeks to live’, received a cancerous liver at St James’s University Hospital in Leeds. In 2009, Matthew Millington, a former soldier, died after being given a smoker’s lungs in an operation at Papworth Hospital near Cambridge.
And last year, an unnamed woman had a kidney removed after discovering the donor had cancer.
So how rare is it really that a patient receives a diseased organ? James Neuberger, associate medical director of NHS Blood and Transplant, estimates that between one in 500 and one in 5,000 transplants will result in cancer in the recipient. He said ‘ it isn’t possible to detect all these cancers at the time of retrieval’ of organs for transplant.
NHS Blood and Transplant has now appointed a research fellow to quantify the frequency of donor-transmitted cancers.
Mr Neuberger says that new consent guidelines, highlighting the small risk of disease transfer, are being drawn up.
‘A full medical history of the donor is always obtained from the medical notes and from talking to the donor’s family, as well as virology screening by a blood test,’ Mr Neuberger explains.

'Sincere and unreserved apologies': The Royal Liverpool University Hospital has blamed human error for the transplants
‘Tests are also undertaken to ascertain how well the organs are functioning. We can minimise risk, but we can’t abolish it completely. Whether to proceed with a transplant comes down to a balance of risk and benefit.’
Hardly reassuring words for Gill — but while she is keen that lessons are learned from the incident, she does not want others who need transplants to be deterred.
And to highlight the importance of organ donation she would like the Royal Liverpool Hospital to establish a remembrance garden for renal patients who’ve died,
Meanwhile it’s clear that for her, life will never be the same.
The local authority house she came home to for the first time after the transplant is pin neat.
Paul is working on the garden and the children flit in and out.
‘It felt like home instantly because family and friends helped paint it with so much love,’ she says.
‘The children went without Christmas presents that year so we could spend our last few hundred pounds on new carpets.
‘That killed me, but they were just happy I was here.’
Last summer, a scan revealed that the cancer hasn’t spread — but she has no idea what the future holds.
‘This kidney could last me ten years or it could last one and I’ll be back on dialysis — with the cancer. I’ve done the research, I know lymphoma is hard to beat but nobody answers my questions. So much has been covered up. They say: “It’s complex.” But I’ve been dealing with medical information all my life . . .’
During the consent process, the risk of contracting cancer was never mentioned, says Gill.
She is pleased new guidelines are being drawn up but asks: ‘Where does that leave me and Rob?
‘If someone had said to me: “There’s a really tiny chance you could get cancer, would you still like to go ahead?” I’d have said no.
‘I still had my sister. I would not have taken that chance.’

Read more: http://www.dailymail.co.uk/news/article-2109557/Patient-reveals-torment-living-monster-inside-given-transplant-kidneys-disease-victim.html#ixzz1o57Pg9R1