Tag: World Kidney Day

Reality of kidney disease highlighted by transplant recipients for World Kidney Day

Two kidney transplant recipients have spoken about the reality of living with kidney disease ahead of World Kidney Day (Thursday 11 March 2021).

Fiona Davies, 39, from Airdrie, and Ross Young, 48, from East Calder, both diagnosed with Polycystic Kidney Disease (PKD), have shared their gratitude for the transplants that have given them their lives back, and the chance to see their children grow up.

Fiona and Ross have backed the campaign to raise awareness of the forthcoming organ and tissue opt out law, in the hope that it will get people thinking about their donation decision.

There are currently around 420 people in Scotland waiting on a kidney transplant, many of whom are on dialysis to keep their kidneys working. 

Ross was diagnosed with PKD in 2003, and has since found that his two sons, now 13 and 16, have the same hereditary condition.  His kidney function deteriorated to the point that he was listed for transplant in March 2010, and received his transplant in November 2010 after only ten weeks on dialysis.

Fiona was diagnosed with PKD as a teenager, which she successfully managed until the birth of her son James in 2012 impacted on her kidney function.  She reached end stage kidney failure in October 2016, and was listed for transplant in March 2017. Her transplant went ahead just three weeks after she was put on the waiting list.

Scotland’s opt out law, which will be introduced on 26 March, means that if people aged 16 and over haven’t recorded a decision about donation, they will be considered a possible donor if they die in circumstances in which they could donate.

People have a choice – to be a donor, or to opt out of donation – and the campaign is encouraging people to record their decision on the NHS Organ Donor Register, and share it with family.

Informing family is important, as under the new law, they will still be consulted to check what their loved ones latest views on donation were.  This is to ensure donation doesn’t proceed where the individual didn’t want it to.

Speaking about the impact kidney disease and her subsequent transplant had on her life, Fiona said: “Looking back, I had no idea how ill I actually was towards the end.  I was getting through life, but was constantly tired and had no concentration.  Motivating myself to do things became harder and harder. 

“I wanted to hold off dialysis until my son started school, but could start to feel things dipping.  I had restless legs and couldn’t sit for any length of time, I felt sick when I ate and was in bed for 7.30pm every night.

“I got the call just minutes after my son’s fifth birthday party and the transplant surgery all went to plan.  I was home six days later and things just got better and better.  It’s quite unbelievable the change it’s made to my life and I have my donor to thank for that.

“I am very pleased that Scotland is moving to an opt out system. You don’t truly understand the impact of organ donations until your life is touched by it and I hope that the move will help increase the number of viable organs available and help those waiting.  Because of organ donation, my son has his mum back, and I have a future.”

Talking about the law change to an opt out system from 26 March, Ross said: “I wouldn’t say life on dialysis was easy, but I knew it was keeping me well, and then the transplant changed everything.

“I have always felt strongly about the law changing to an opt out system, and I even approached the Scottish Parliament, which is when I learnt the wheels were already in motion for the Bill. 

“I am really pleased to see the law finally coming into action. It’s the simplest way to make a difference while making sure everyone knows they’ve got a choice. If you don’t want to be a donor you just have to opt out.

“Knowing that both my sons have the same condition as me, I’m grateful for developments like the law changing before either of them finds themselves in the position I did.”

For more about the law change, and to record your donation decision, visit organdonationscotland.org or call 0300 303 2094.

Kidney Care UK is hosting a webinar tomorrow (Thursday), which will involve a range of speakers and experts answering questions around living well with kidney disease, kidney health, and the forthcoming organ and tissue donation law change in Scotland.

The event is open to anyone affected by kidney disease, and you can book your place here: www.kidneycareuk.org/scotland-webinar

Organ Donation: it’s time to talk

A woman who gave her mother a second chance at life by donating her kidney has spoken of the importance of people within black, Asian and other minority ethnic communities discussing organ donation ahead of World Kidney Day (12 March 2020).

Syma Shahzad, 40, who donated to mum Anees Haq in 2008, shared how she was challenged about her decision due to conflicting beliefs and knowledge within her community, and encouraged people to think about what they would want to happen and discuss it with family.

Syma, who works as a pharmacist in Glasgow, added her support to the awareness drive ahead of World Kidney Day, as statistics show the proportion of patients from minority ethnic communities in Scotland on transplant waiting lists has gradually increased over the past two years.

In March 2020, 10.5 per cent of those on the active waiting lists for a transplant from a deceased donor were recorded as being from a minority ethnic group, compared to 9.2 per cent in March 2018.

Statistics show that in the last five years, around half as many families of minority ethnic eligible donors supported organ donation after their loved one’s death, compared with the families of white eligible donors.

People from black and Asian communities are more likely to develop conditions such as high blood pressure, diabetes and certain forms of hepatitis than white people, which increases the likelihood of them needing a transplant1.

A kidney transplant is more successful if the donor and recipient share the same ethnicity.

Worried about the impact of dialysis on her mother’s life after she was diagnosed with chronic kidney disease in 2007, Syma raised the possibility of her donating her kidney.

A healthy person can lead a completely normal life with one kidney, and a kidney from a living donor generally offers the best outcomes for patients living with kidney failure who need a transplant.

Syma said: “From the outset, our consultant at the Glasgow Royal Infirmary was fabulous. He helped us progress everything as quickly as possible so we could make sure the transplant went ahead before my mum had to start dialysis. I had the first tests in March 2008, and successfully donated my kidney to her in the October of that year.

“Being Muslim, there’s a lot of stigma attached to organ donation. I believe I wasn’t doing anything to put myself in danger, I was simply helping give my mother a better quality of life. For me that was the ultimate decider.

“My belief is that whatever your time is destined to be, your time will be; but whatever you can do to improve that quality of life is essential.

“Within our community, there are so many challenges around mindset and conflicting religious knowledge. I was very headstrong and wouldn’t let anyone dissuade me from doing this. With Asian people being at a higher risk of diabetes, and the associated kidney problems, I would love to see more people considering donation.

“I would encourage anyone who’s unsure about their stance on organ donation to sit down and consider what would happen if it was someone in your family who needed a transplant. Having been through it with my mother, if I could I’d do the same for anyone else in that situation.”

From Autumn 2020, the law around organ and tissue donation after death is set to change to an opt-out system.  This means that if people aged 16 and over have not recorded a decision about donation, they will be considered as a possible donor when they die, unless they are in one of the excluded groups.

Jen Lumsdaine, Lead Nurse for Living Donation Scotland said: “Patients from black and minority ethnic backgrounds who need a kidney transplant tend to wait longer due to a shortage of donors.

“As Syma’s story illustrates, living donation can ensure a better outcome for the patient, and dramatically reduce the time a loved one has to spend on dialysis.

“Choosing to donate a kidney remains an exceptional gift, and living donation will continue to be vital part of continuing to improve transplant numbers when opt-out legislation is introduced, so more lives can be saved and transformed.”

To find out more about living donation visit livingdonationscotland.org