Nurses are helping potential live kidney donors and patients in new role

Sue Dean and Jane Hughes expanded their joint role as Transplant Nurses with the Trust in November to help speed up the process for people wanting to be live kidney donors.

The role, funded for one-to-two years by the British Kidney Association, sees them working with potential live kidney donors once they have been identified by Consultants or other staff at the Trust or who themselves have put their names forward for kidney donation.

Potential donors will first be asked to fill in a questionnaire and if this deems them suitable for live kidney donation they will undergo the first phase of tests which takes the form of a Health MOT, all of which is done at the Royal Shrewsbury Hospital (RSH) or Princess Royal Hospital (PRH) in Telford thanks to the new role. If they are still suitable once this has taken place they will go through to a second phase of tests at one of the country’s Transplant Centres.

The Transplant Nurses, whose work is being highlighted to mark World Kidney Day today, help potential donors through this journey at RSH or PRH, where before they would have had to travel to a Transplant Centre for the first phase of tests.

Jane said: “Our role is to help potential donors at the start of this journey to see if they are suitable to donate their kidney. It is about reducing the amount of time potential donors may have to wait for the first phase of tests, and it also means they don’t have to travel out of the county for this.

“If we identify that they are suitable for donating their kidney they would then go on to a Transplant Centre to continue this process, but if they are not found to be suitable it means they won’t have had a lot of wasted time and travelling to find this out.”

Patients who are in need of a kidney transplant – be it from a live donor or somebody who has stated they want their organs donated for transplants once they have died – and are fit enough to stay on the national Organ Donor Register are also supported by the Transplant Nurses.

Sue added: “Part of our role for patients in need of a kidney transplant, is to ensure they are still healthy enough for this to take place. The rest of our role is providing them with information, education, being a point of contact for kidney transplant, inviting them to seminars to find out more and providing them with support. We are being seen as a good local contact for potential donors and patients needing a kidney transplant, who know they can come to us both for information and advice but also to help them on their journey, and patients are saying they find it reassuring that we are there.”

Dr Rob Law, Emergency and Critical Care Centre Chief at the Trust, said: “The Trust actively supports and encourages organ donation, when appropriate. With regards to renal transplantation, this has the potential to extend and transform the quality of life for recipients. Kidneys can be donated by people who have died or by living donors. It is important for hospital staff to know what the wishes of patients are in relation to organ donation and therefore we would like to encourage people to discuss their wishes with their family and consider putting their name on the Organ Donor Register.”

Jan and Alan Cooper – Photographer: Matt Giles

Jan and Alan’s story

Retired District Nurse Jan Cooper knows all too well about the importance of kidney donors. The 64-year-old is on the transplant waiting list after being diagnosed with polycystic kidney disease.

Her mum was diagnosed with the same disease and had a successful transplant which lasted for 27 years before she died of an unrelated illness aged 91. Jan’s grandfather had previously died aged 72 in the 1970s after suffering from the same disease at a time when no treatment was available where he lived, only palliative care.

Jan, who lives in Wellington with her husband Alan, said: “I was about 20 and undertaking my nursing training when I was diagnosed with polycystic kidney disease. I had seen my grandfather dying from it and my mum was diagnosed with it as well.

“My mum had been diagnosed when she was about 40 but it was not until she was 61 that her kidneys deteriorated to the extent that she needed a transplant. She lived in Devon at that point and they didn’t perform transplants for people over 60. She searched the country for somewhere that she could have a transplant and moved to the Wirral.

“She had peritoneal dialysis for three years and was 64 when she had a transplant that lasted for 27 years and which was still functioning when she died of something else aged 91. After I was diagnosed, my cysts increased over time, damaging my kidneys. We moved to Wellington in 2006 and my new GP gave me routine blood tests and the next morning I had a call from my doctor who said I had less than one-third renal function and asked me to see him straight away.

“From that point on my kidneys have diminished greatly in functionality and in January last year I was found to have eight per-cent functionality which meant I would soon need to start dialysis. I started haemodialysis in October last year and was trained from the start in home haemodialysis. Since 28 December I have been having dialysis at home and couldn’t do this without the support of my husband Alan.”

Jan, a mum of four and grandmother of seven who retired from nursing about two years ago, has 12 hours of dialysis a week. She has been on the transplant waiting list since October 2010 and receives support from Transplant Nurses at The Shrewsbury and Telford Hospital NHS Trust. They provide her with advice and information while she waits for a suitable donor to be identified.

Jan said: “Kidney problems don’t just happen to older people, they can happen to anybody of any age. It’s important to get support. I have had fantastic treatment and incredible support from staff at the Trust.”

Her husband Alan, who was Headteacher at the Marches School in Oswestry for 14 years until he retired in 2002, has been moved to write a short story about organ donation, which has been published on Kidney Research UK’s website.

The story, called Life Chances and written under the pen name Al James, focuses on a primary school teacher who is having dialysis and is in need of a kidney transplant, and a young medical student who is involved in an accident and who’s parents have to decide whether to allow his organs to be used for donation.

Alan, 67, said: “I spent three months coming to the Renal Unit at the Royal Shrewsbury Hospital so I saw how it works and the different things that happen when you are having dialysis. I wanted to highlight what it is like and Kidney Research UK felt it was an interesting story and have published it on their website. It is free to read but there is an option to make a donation to the charity.

“It is important that people know about the importance of organ donation. People who have allowed their relatives’ organs to be used have felt happy that they have been able to do this, and those who have said ‘no’, maybe in the heat of the moment, have regretted it.”

To read Alan’s short story visit www.kidneyresearchuk.org/home.php