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Author Topic: Kidney transplants are not always worth the risk  (Read 2929 times)
okarol
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« on: March 26, 2011, 12:01:38 AM »

Kidney transplants are not always worth the risk
I was offered organs for my patients from donors with leukaemia and Hodgkin's disease
 
René Chang
The Guardian,    Friday 25 March 2011

You report how "two transplant patients were given kidneys from a donor with a rare and aggressive form of cancer" (Patients given kidneys from donor with cancer, 22 March http://www.guardian.co.uk/society/2011/mar/22/transplant-patients-kidneys-donor-cancer ). And, your article states: "One senior official at the NHS Blood and Transplant Service (NHSBT) warned: 'We can minimise risk but we can't abolish it.'"

Though it's difficult to comment without full details of the cases, I am not surprised that this has happened – especially with the recent increase in the number of inappropriate offers of kidneys. Prior to my retirement as director of a transplant unit, I was offered kidneys for my patients that came from donors known to have Hodgkin's disease (a form of lymphoma), leukaemia and sepsis, all of which I refused.

Donor families should not be placed in the invidious position where their generous offer to donate kidneys is turned down. In many units, the decisions to accept or reject kidney offers are made by trainees with fewer years of experience than a consultant.

I agree with lawyer John Kitchingman, who says: "Kidney transplantation isn't urgent like liver or heart transplant." There is the alternative of dialysis. The vast majority of kidney transplants take place to improve the quality of life – as such there must be a low tolerance of failure. While the public harbour the erroneous belief that it is all-important to have the chance of a kidney transplant, the goal surely is not just to have had a transplant, but also to survive the operation with a working kidney graft.

Robert Law, one of the recipients, had a living donor "who had been tested and gone through all the procedures" and yet was offered the cadaver kidney, when a kidney from a living donor offers the best possible results. Kidney transplants, like much surgery, are a question of balancing risk against potential benefit. In the case of living donor transplants the risk is to both the potential donor and recipient, while the benefit is mainly to the recipient (any benefit to the donor is usually psychological). A decision has often to be made by clinicians in the face of uncertainty. Was the right balance struck in this case?

The recent aim to increase the number of kidney donations by 50% by 2013 is a process target and, crucially, not an outcome target. It costs £150,000 to keep a kidney failure patient alive for five years on dialysis. The figure for a successful transplant is £43,000 – £23,000 for the first year and £5,000 for each of the subsequent four years (the cost of the immuno-suppressive drugs and outpatient monitoring).

Following this logic, the cheapest option would be to give the patient a transplant, followed by death after the operation! A cynic might at least be tempted to suggest that the policy decision by the bean-counters in hospital management to increase kidney donation is connected to the fact that kidney failure patients, although making up only 0.8% of the NHS patient population, consume 4-5% of the total NHS resource. Thank goodness it's doctors not bean counters who look after our patients.

http://www.guardian.co.uk/commentisfree/2011/mar/25/kidney-transplant-worth-the-risk
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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 26, 2011, 12:11:14 AM »

I understand that dialysis is an "alternative", but if it was such a wonderful alternative, there wouldn't be so many people who were waiting for a kidney.  I get a bit miffed when someone who is not on dialysis so blythly talk about it as if were a simple and pleasant thing.  I wonder if the author, ex-head of a transplant unit, has a good idea of how burdensome dialysis is.
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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."
okarol
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« Reply #2 on: March 26, 2011, 12:23:07 AM »

I think the doctor is saying that there's no reason to rush a kidney transplant, or take high risk deceased donor kidneys, because dialysis is going to give you time. That's my take on it anyway.
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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 #3 on: March 26, 2011, 12:27:58 AM »

I think the doctor is saying that there's no reason to rush a kidney transplant, or take high risk deceased donor kidneys, because dialysis is going to give you time. That's my take on it anyway.

I can understand that, but I think it is important for the patient to make that call.  Who is to say that this patient's sister didn't have some disease that the pre-testing missed?  It is worrying, though, that this transplant doctor had been offered kidneys from diseased donors.  Does the UK have less strict regulations than the US?
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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."
okarol
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« Reply #4 on: March 26, 2011, 12:31:12 AM »

I don't know. It's disturbing, that's for sure.

And you're right, living donors can have an illness, but they are very throughly evaluated.

A deceased donor might not even have been to the doctor in 5 years - health history unknown - but it's not a question you're even allowed to ask when you get the call!  :urcrazy;
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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 #5 on: March 26, 2011, 12:47:40 AM »

I don't know. It's disturbing, that's for sure.

And you're right, living donors can have an illness, but they are very throughly evaluated.

A deceased donor might not even have been to the doctor in 5 years - health history unknown - but it's not a question you're even allowed to ask when you get the call!  :urcrazy;

And you have to make a decision so quickly!  I guess when you think about it, it's pretty astonishing that more mistakes aren't made.
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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."
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« Reply #6 on: March 26, 2011, 12:42:02 PM »

When Carl's call came, it was in the middle of the night. He did not ask any questions then, and hardly remembered any of the conversation except the time to be at the hospital. One does not come out of a sound sleep prepared to make life changing decisions.  :lol;

It was only AFTER the procedure that we learned that the donor tested positive for being exposed to CMV, but that Carl also tested positive.

So far, so good. But to be honest, it hasn't all been peaches and cream. And the drugs raise the risks for OTHER problems. But isn't just about everything in life kind of a crap shoot?

Aleta
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Sugarlump
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« Reply #7 on: March 26, 2011, 12:55:17 PM »

I wonder if that transplant doc would feel the same way if he had kidney failure ???   >:(

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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
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KarenInWA
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« Reply #8 on: March 26, 2011, 03:15:29 PM »

I think what bothers me the most about this story is that the kidney was offered to a patient who already had a live donor in the works.  I look at having a live donor as a gift, directly to the recipient, and indirectly towards the others who are also waiting on the list with that recipient.  For every patient who has a live donor, that's one more person on the list who gets to move up and have a quicker chance at getting a cadaver kidney.  That is an awesome thing!  If my friend works out and is able to be a donor, either to me directly, or to me indirectly via a kidney swap, she will be contributing her amazing gift of life to me and potentially a few others as well.  Now granted, I know this decision is not to be taken lightly, and the donor's feelings and opinions, etc need to be considered.  There is another way of looking at this (and I'm just talking in general, not necessarily in this case in the story), what if the live donor *wants* to donate?  My potential donor has wanted to do this before, but she did not have an easy time in getting anywhere.  Now she can donate to me, or on behalf of me, IF she is healthy enough to donate.  I already have ideas in the works about how I want to celebrate her if we are able to go forward with it, and I am looking forward to being able to do that.  I know, it's a HUGE decision and not to be taken lightly.  I just feel so bad for the two patients involved in this story, especially given that one (or was it both?) of them had live donors in the works.  Sad, tragic, and should not be happening.

KarenInWA
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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!
MooseMom
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« Reply #9 on: March 26, 2011, 04:39:52 PM »

You make some very good points, KarenInWA.  I don't know for sure, but I suspect that the patient thought that he could spare his sister the risk from surgery if he took the cadaver kidney instead.  What if he had decided to go ahead with having his sister donate, and she died on the table.  Any and all surgery does carry that small risk, probably a greater risk than getting a new organ from someone who had this rare cancer.  I can understand wanting to spare your loved one the physical pain and risk.

Who would have thought that anyone would have TOO MANY kidneys to choose from?  Amazing!

But you're right...every live donation means that there is one more cadaveric kidney for someone else on the list.
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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."
billmoria
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« Reply #10 on: March 27, 2011, 05:01:23 PM »

In a word: NO. The UK does not have less stringent rules about kidneys donated. I think the doctor is just saying that you have to think hard about a kidney transplant. It can seem like a simple decision.
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