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Author Topic: A kidney operation changed Robert's life. He got cancer  (Read 1329 times)
okarol
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« on: March 21, 2011, 11:20:11 PM »

Tuesday, 22 March 2011
A kidney operation changed Robert's life. He got cancer

Father of four was assured stringent tests had been carried out on the organ he was receiving – but there was one vital flaw
Six days after his kidney transplant, Robert Law was told he might have been accidentally given cancer as well.

"The surgeon said: 'I have some bad news for you. We have done an autopsy on the donor and we found she had intravascular B-cell lymphoma.' I said: 'Are you saying I'll have it?' He said: 'We don't know but we think that is probably the case.'

"I took a sharp intake of breath and a few seconds to consider the matter. 'Basically you are telling me I probably have cancer now.'

He just nodded his head and I said, pulling myself together: 'OK. Where are we going from here? What do we do and how do we do it? What's the prognosis?'"

Five days later, the diagnosis was confirmed after a biopsy. He had cancer.

Law, a divorced father of four adult children, had moved to New Ferry, Wirral, Cheshire, after giving up a job in advertising in London in 2008.

In 2005, he suffered a brain haemorrhage and, while recovering, doctors told him he had end-stage kidney disease and would need dialysis or a transplant.

His sister Susan offered to be a live donor, "which is a far better option than dialysis or cadaveric donation".

Law moved back north where she lived. "Everything seemed to be working out and I was on the appropriate drugs, although I had only about 10% functioning on my kidneys. I was told I was a great match with my sister and everything would be OK. I fully expected that Susan and I would get a call to go in to the hospital."

At 3.10am on Friday 26 November, a staff nurse rang. "She said: 'We have a kidney for you.' I was gobsmacked. I was on course for a live donor and said there must be some mistake. She said there was no mistake. 'We would like to have you in as soon as possible, half an hour if you can.'

"I contacted my family, spoke to my girlfriend. I thought it would save Susan from having one of her kidneys removed. So I went in at about ten past four in the morning."

He was prepared for surgery. "I went through a process of consent forms, double and treble checks … I felt reasonably at ease, although it was an anxious time. But you think medical people are in charge, it's going to be OK.

"You're warned there are risks from a transplant. Your heart may give up, the kidney may not work or be rejected, you may be sick. You are told all sorts of things that can go wrong but only in a small percentage of cases."

Law insists he was not told specifically he could be given a diseased or cancerous kidney either before joining the transplant waiting list or before the operation.

"I was assured that lots of tests were carried out prior to accepting a donor kidney and the brochures provided by the hospital told of stringent tests, as well," he said.

When he was later told his donor might have had cancer, he asked what the donor died of. "I was told she had been certified dead of a stroke and she was admitted with symptoms of either a head injury or a brain injury. I was worried about why they had not realised the donor died of cancer. The reply was that it was a very rare disease and very hard to diagnose."

The surgeon later outlined his treatment options. "'One, we take out the kidney, but if we remove the kidney we may not remove the cancer. You are going to have to undergo treatment for the cancer. Another is to keep the kidney and give you treatment with rituximab [an anti-lymphoma and anti-rejection drug]. There is a third option. That is to do nothing.'

"After 30 seconds I said: 'You are not touching my kidney. I am keeping it.'"

Law decided on rituximab and chemotherapy in a treatment known as R-chop. He asked about his chances of survival. The response, said Law, was: "There is a good chance, but we don't know. We have never come across this before."

Law said: "My girlfriend and I have looked up details of the cancer on the internet. We found various sites where patients were normally done for within two years and others where people have gone into remission.

"We have gathered that symptoms may not be spotted early on. One symptom is brain damage of some kind. People can present with a tumour, dementia or confusion."

Law has so far had four cycles of chemotherapy, which, he said, had nasty side-effects.

He will have up to four more and is also on drugs to maintain a healthy transplant. "Most of the time I feel absolutely crap," he said.

guardian.co.uk © Guardian News and Media 2011

http://www.u.tv/News/A-kidney-operation-changed-Roberts-life-He-got-cancer/5398caef-7533-4d3c-9a58-15253efae8c9
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #1 on: March 21, 2011, 11:24:14 PM »

Everything in life carries a risk.  But what a terrible blow.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
KarenInWA
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« Reply #2 on: March 22, 2011, 12:34:10 PM »

I don't understand why he was made to accept a cadaver kidney when his sister was going to donate?
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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!
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: March 22, 2011, 01:29:23 PM »

He decided to do this rather than have his sister go through surgery. He could have declined the offer.
"I contacted my family, spoke to my girlfriend. I thought it would save Susan from having one of her kidneys removed. So I went in at about ten past four in the morning."
It's the middle of the night and you have to make these decisions. Hard to know what to do!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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