York plea for more organ donors

Jayne Jackson, who needs a kidney transplant

Jayne Jackson, who needs a kidney transplant

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A YORK woman who has nine hours of dialysis a day has urged people to join the organ donor register - as it emerged there are 45 people currently waiting for life-saving kidney transplants in North Yorkshire.

Jayne Jackson, 55, of Haxby, has been waiting for a kidney transplant for two years after becoming seriously ill with kidney disease and seeing her kidney function fall to eight per cent.

Mrs Jackson, whose condition is well managed by nightly peritoneal dialysis, has urged people to sign up to the register to address a shortage of donors.

She said: "If there is no kidney, there is no kidney. It doesn't matter how ill you are. If there's a match, there's a match.

"I wish people would sign up and people need to be thinking about it before that situation arises."

There are about 125 people in North Yorkshire waiting for a transplant, and another 66 waiting in the East Riding of Yorkshire. Last year 14 people in North and East Yorkshire died because of the shortage of organs.

York Teaching Hospital NHS Foundation Trust said there are about 45 people awaiting a kidney transplant on a list which covers York, Scarborough and Harrogate.

Jo Brooks, donor transplant co-ordinator for the Trust, said: “On average, three people a day die in need of an organ transplant in the UK because there aren’t enough organs available. More lives would be saved if more families agree to donate their loved one’s organs after death. Sadly, four out of ten families don’t give permission to donate when approached.

“The decision to donate a loved one’s organs falls to the family if you die in circumstances where you can donate. If you’ve already talked about it, your family won’t have the burden of having to guess what you would have wanted at an incredibly difficult time and they are more likely to support your decision to donate.

"Just 45 per cent of families agree to organ donation going ahead if they are unaware of their loved one’s decision to be a donor but this figure rises to 95 per cent when they know the decision.”

NHS figures show there were 7,026 patients waiting for a transplant nationally at the end of March 2014.

Last year 456 patients died while on the active waiting list for their transplant and a further 828 were removed from the transplant list. The removals were mostly as a result of deteriorating health and ineligibility for transplant and many of these patients would have died shortly afterwards.

Last year 53 people living in North Yorkshire and 22 in East Yorkshire benefited from a life-saving organ transplant thanks to families making the decision to donate when a loved one died.

To sign up to become an organ donor, visit http://www.organdonation.nhs.uk/


Jayne has waited more than two years for kidney transplant

WHEN Jayne Jackson became very seriously ill with kidney disease she had no choice but to step down from her demanding job with Yorkshire Ambulance Service.

Despite having been diagnosed with polycystic kidneys over 30 years ago, the condition had not affected her until about three years ago when she was unable to get over an illness.

Feeling sick, tired and lethargic, Mrs Jackson was permanently exhausted, until she started daily peritoneal dialysis at home and saw a dramatic change in her health.

"It came as a shock to me," Mrs Jackson said, "I had gone all those years being well to being almost housebound.

"When I started dialysis I felt so much better, I thought 'this is a mini miracle'".

Mrs Jackson has been on a transplant waiting list for two years as even though her close relatives have been tested, none are a suitable match.

Now staff at York Hospital send other patients to speak to Mrs Jackson about the positives of dialysis. "I met one lady in her 60s who looked awful," she said, "She was exhausted. I said to her, 'just do it, you can't explain how much better you will feel'".

Mrs Jackson said the treatment works so effectively , she does not often think about her personal need for a transplant. "I don't think about it while the dialysis is keeping me well," she said.

Comments (7)

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2:33pm Tue 26 Aug 14

Jonathan Latham says...

This article is great because anything to raise awareness of this is good.

It's worrying to think that 5% of families don't allow their deceased loved one's organs to be donated even despite their loved one being on the donor register and making their wishes to donate known. Personally I think the government should legislate to make the system an opt out system like some other European countries do.

I do however feel the need to criticise this article slightly I'm afraid. It may leave the reader thinking that dialysis is a solution. It is not. It is a treatment but only in the short term, compared to a transplant which could give back an almost normal lifestyle.

Peritoneal dialysis is somewhat unintrusive to someone's life because it takes place every night at the person's home while they sleep. This is why it was the method of choice for my late mother Lynda Senior also of York. I believe her consultant at the time advised she should only use this method for about four years, after which she should go for the conventional hemo-dialysis. She didn't like that method and so with careful diet management she managed to defy her condition and became the longest surviving peritoneal dialysis patient after 14 years, at which point she lost her battle mainly because of a further condition actually caused by the peritoneal dialysis itself.

I have been nominated for an ice bucket challenge today, I will mention donor cards, however other than that I wouldn't know where to start to get the government to change the system.

Any ideas anyone?
This article is great because anything to raise awareness of this is good. It's worrying to think that 5% of families don't allow their deceased loved one's organs to be donated even despite their loved one being on the donor register and making their wishes to donate known. Personally I think the government should legislate to make the system an opt out system like some other European countries do. I do however feel the need to criticise this article slightly I'm afraid. It may leave the reader thinking that dialysis is a solution. It is not. It is a treatment but only in the short term, compared to a transplant which could give back an almost normal lifestyle. Peritoneal dialysis is somewhat unintrusive to someone's life because it takes place every night at the person's home while they sleep. This is why it was the method of choice for my late mother Lynda Senior also of York. I believe her consultant at the time advised she should only use this method for about four years, after which she should go for the conventional hemo-dialysis. She didn't like that method and so with careful diet management she managed to defy her condition and became the longest surviving peritoneal dialysis patient after 14 years, at which point she lost her battle mainly because of a further condition actually caused by the peritoneal dialysis itself. I have been nominated for an ice bucket challenge today, I will mention donor cards, however other than that I wouldn't know where to start to get the government to change the system. Any ideas anyone? Jonathan Latham
  • Score: 8

5:49pm Tue 26 Aug 14

Older Sometimes Wiser says...

I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help.
I am concerned however that those without close relatives might be missed out at death and organ donation missed?
Is anything in the system to formally register that one is a donor with your GP?
I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help. I am concerned however that those without close relatives might be missed out at death and organ donation missed? Is anything in the system to formally register that one is a donor with your GP? Older Sometimes Wiser
  • Score: 3

5:50pm Tue 26 Aug 14

Older Sometimes Wiser says...

I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help.
I am concerned however that those without close relatives might be missed out at death and organ donation missed?
Is anything in the Organ Donation system to formally register that one is a donor with your GP?
I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help. I am concerned however that those without close relatives might be missed out at death and organ donation missed? Is anything in the Organ Donation system to formally register that one is a donor with your GP? Older Sometimes Wiser
  • Score: 0

8:12pm Tue 26 Aug 14

Digeorge says...

Jonathan Latham - your MP and an e-petition dependent on the numbers you get is the way to change the system. There's probably one ongoing anyway.

Sadly can't donate but would have liked to. I suspect I would have been an ideal candidate had it not been for genetics.

Good luck for the iceberg challenge.
Jonathan Latham - your MP and an e-petition dependent on the numbers you get is the way to change the system. There's probably one ongoing anyway. Sadly can't donate but would have liked to. I suspect I would have been an ideal candidate had it not been for genetics. Good luck for the iceberg challenge. Digeorge
  • Score: 3

10:28pm Tue 26 Aug 14

Overproof says...

Organ donation should be the default, and mandatory - to save lives.

With a provision for exception for people who have genuine religious beliefs that run contrary to this.
Organ donation should be the default, and mandatory - to save lives. With a provision for exception for people who have genuine religious beliefs that run contrary to this. Overproof
  • Score: 7

10:58am Wed 27 Aug 14

Loollah says...

Older Sometimes Wiser wrote:
I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help.
I am concerned however that those without close relatives might be missed out at death and organ donation missed?
Is anything in the system to formally register that one is a donor with your GP?
There is an national organ donor register now. You can register on-line but close family will always be consulted.

Sadly the criteria and window for organ harvesting is very small. Whilst people may be registered as organ donors, the circumstances of their death often mean the organs are unusable!

I wholly agree with a national opt-out system though.
[quote][p][bold]Older Sometimes Wiser[/bold] wrote: I have had a donor card now for some decades, and hope that should I die ( "not pass away"), all my suitable organs would be available for transplant. My age may be a problem but a reasonably healthy lifestyle should help. I am concerned however that those without close relatives might be missed out at death and organ donation missed? Is anything in the system to formally register that one is a donor with your GP?[/p][/quote]There is an national organ donor register now. You can register on-line but close family will always be consulted. Sadly the criteria and window for organ harvesting is very small. Whilst people may be registered as organ donors, the circumstances of their death often mean the organs are unusable! I wholly agree with a national opt-out system though. Loollah
  • Score: 1

5:37am Thu 28 Aug 14

Jonathan Latham says...

Oops, sorry Loollah I was trying to click "thumbs up" on your post but fat thumbs. Looks like you can't change your mind on this. :-(
Oops, sorry Loollah I was trying to click "thumbs up" on your post but fat thumbs. Looks like you can't change your mind on this. :-( Jonathan Latham
  • Score: 0

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