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okarol
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« on: March 21, 2011, 11:28:49 PM »

Last updated: March 22, 2011 
 
 
Transplant patients given kidneys from donor with cancer

Investigation under way into how two transplant patients were given kidneys from a donor with a rare form of lymphoma

An investigation is under way into how two transplant patients were given kidneys from a donor with a rare and aggressive form of cancer.

The incident at the Royal Liverpool University hospital involved organs from a woman who died at another hospital, and was later found to have had a hard-to-identify disease called intravascular B-cell lymphoma. Both patients had been preparing for live transplants from their sisters but accepted the donor kidneys instead. The recipients are now receiving chemotherapy treatment.

Although cancer transmission is a known risk of transplantation among clinicians, the case raises questions about guidance to patients and whether sufficient checks are made.

One senior official at the NHS Blood and Transplant Service (NHSBT) warned: “We can minimise risk but we can’t abolish it.”

An investigation has been launched by the hospital and the transplant service. James Neuberger, associate medical director at NHSBT, said the incident, last November, happened weeks before new guidance was circulated to clinicians on obtaining consent from patients and warning them of risks – including from donor-donated tumours.

The service has also begun work on compiling a national register of such incidents. Its says postmortems on donors before transplantation are impossible as they would take too long and render organs unusable. Most lymphomas could not be detected by blood tests.

The patients in the Liverpool case have notified lawyers, who are seeking legal aid to investigate how they were counselled, the donor investigated and the organs screened. The case, which has also been investigated for BBC Radio Four’s File on Four documentary broadcast on Tuesday , comes as the government considers removing state aid in potential clinical negligence cases.

Both patients have made formal complaints to the NHS. One, Robert Law, 59, from Wirral, Cheshire, said: “I don’t know whether there is anyone to blame or not. We want to find out how, why and when and what mistakes have been made, if any.

“Given that I had a live donor, who has been tested, gone through all the procedures, why was I given a cancer-infected kidney from someone else? Anger has not really entered my mind … all my energies are focused on getting better.”

Gillian Smart, 46, from St Helens, Merseyside, said a transplant had previously been her “get out of jail card”. She added: “This was where my life could start again. Now I think, goodness, I may have many years of fighting a potentially fatal illness.”

The Royal Liverpool’s medical director, Peter Williams, said the hospital was told by the transplant service that two kidneys had become available from a donor who died at another hospital.

“When we received confirmation that the kidneys were suitable for transplant, our specialist transplant team discussed options and risks with these patients and obtained their consent,” Williams said.

“Both operations went well and it was only after a postmortem had been performed that we were made aware of the donor’s condition. We immediately fully informed both patients and discussed their options with them.

“This is a very difficult and distressing time for Rob and Gillian and we continue to offer our full support, care and treatment to them.

“We understand that this has been a very upsetting experience for them but we would like to emphasise that such cases are very rare.”

In a letter to Law, the hospital’s chief executive, Tony Bell, said that “had there been any suspicion that the donor had cancer the transplant would not have taken place”.

He understood “the donor’s death was not due to the lymphoma” and explained most patients remained on waiting lists for kidneys from dead donors in case potential live donors proved unsuitable.

Neuberger said “everything possible is always done to reduce the risk of any transmissible diseases”.

When patients were registered for a transplant, “they are given a full explanation of the risks surrounding transplantation. No transplant is risk-free, but we do everything we can to make sure that any organ offered up for transplant is tested and deemed fit for transplant.

“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. Tests are also undertaken to ascertain how well the organs are functioning.”

Law’s lawyer, Eddie Jones, of Manchester-based JMW, said his client’s condition before the transplant had not been life-threatening. “The tragedy of his particular case is that if he had had his sister’s kidney, he would have been fine … lymphoma, or indeed any type of haematological cancer, is an absolute contra-indication for transplantation. Why wasn’t a postmortem on the dead donor performed sooner?

“And as lifesaving operations are increasing, isn’t it time that strict guidelines are laid down to ensure patient safety and avoid this type of situation in future cases?”

Smart’s solicitor, John Kitchingman, of law firm Pannone, said: “Unexpected malignancy in a transplant donor is a known risk which arises from time to time, but the circumstances of each case differ. In all cases, though, the transplant team’s decision to offer a kidney for transplant should be underpinned by the requisite certainty as to the cause of the donor’s death.”

He would investigate whether Smart was unnecessarily exposed to risk when she was offered the kidney and whether she was advised properly so that she could make an informed choice.

“Kidney transplantation isn’t urgent like liver or heart transplant,” said Kitchingham. “Gill and her doctors knew that there was no urgency and that she had alternatives.”

The NHS says such incidents are rare and there are long waiting lists for transplants. Three people die in the UK every day because not enough organs are donated. The service says 6% of people on waiting lists for kidney transplants die each year. For heart and lung transplants, the figure is about 20% and for those awaiting a liver transplant, 15%.

In October 2009 an inquest heard how a former soldier died after being given a smoker’s lungs in a transplant at Papworth hospital, Cambridge.

http://oilleader.com/2011/03/transplant-patients-given-kidneys-from-donor-with-cancer/
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phyl1215
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« Reply #1 on: March 22, 2011, 06:57:51 AM »

I saw this and also another one about someone getting Aids because the donor had unprotected sex the week before the transplant.  Hopefully this could lead to last minute testing but this seems to be rare in both cases.  I assume with some diseases like cancer it wouldn't show in the blood work anyway.
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KarenInWA
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« Reply #2 on: March 22, 2011, 08:01:50 AM »

I thought you could go "on hold" on the list when a live donor is being tested for you?  I'm about to go through this myself, and am thinking of placing myself on hold.
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
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« Reply #3 on: March 22, 2011, 03:08:10 PM »

I thought you could go "on hold" on the list when a live donor is being tested for you?  I'm about to go through this myself, and am thinking of placing myself on hold.
Maybe you can.  The above happened in the UK (where I am) and when I started being tested so that I can donate to Blokey one of my first questions was 'Does me being tested affect him being on the list?'  The answer is no, he stays on it and if the right kidney comes up it gets offered to him.  We weren't given the option of putting him 'on hold' although I suppose we could have requested it.  I'm not sure why we would want to do that though. 
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« Reply #4 on: March 22, 2011, 05:40:12 PM »

Couple of thoughts -- the case in NY (I believe) did involve HIV virus,  not AIDS.  Different.     There have been other cases; seems like one was in Chicago a few years ago.   

I never went "on hold" as people were being tested to donate.  I would take the first one available because you never know if the living donors are going to make it through the evaluation process. 

When a kidney is tested right before surgery, there are times things will slip by.  Virus can be there and not show up for 2 weeks.  You have to go with the teams best evaluation they can give about the kidney.  There really is a lot of trust in a transplant and it is a huge leap of faith.  But, it is so worth it.   IHD helped me make the best decision for me by giving me all the tools and information I needed.    Good luck to all. We want new kidneys for you!!!   
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lawphi
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« Reply #5 on: March 22, 2011, 06:11:47 PM »

My husband's second transplant was from a cancer survivor.  She had been cancer free for 20 years.
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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