Living Kidney Donation

Author Archive

We often take the NHS for granted. Quick to moan when things go wrong, such as long waiting lists. Okay the NHS is not perfect (what medical system is). We all know the NHS is under funded and has not been “updated” for far too long.

When this lady contacted me – who is a Vet in USA – I count my blessings that I have the NHS – warts and all! Family (including myself) have been treated quickly for cancer. A family member was given so much home help when she became old and unable to care for herself. Many instances where I am so grateful for the NHS. Yes there have been times I have been frustrated but ……

I hope things have changed in the USA since I heard from her. I often have people from other countries contact me with stories of despair and hopelessness. Brings me to tears and I feel so frustrated and sad that I cannot help. It also reminds me to be so very grateful for our NHS.

This is her story.
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I’m a 100% service connected veteran with kidney failure. I have been trying to survive my disease, fight for care & benefits from the VA for both myself and other vets, deal with additional complications
such as breast cancer and other ailments.

Getting on multiple kidney transplant lists. Ohio State, U of Toledo, Nashville, and U Cincinnati. My VA doctor told me “not to try so hard and get my hopes up”! Been on dialysis for 30 years! I’ve overcome many obstacles to reach this point and I’m now able to pass the battery of exams to be considered. Each transplant center optimistic about my chances. VA doctor is determined to block me by saying ALL of the copay after A & B is on me and could be $90,000!

I am ready for a change in my life! I realize that there is NO cure, but a change would allow me a better quality of life and will allow me to work to inspire others by showing what I’ve done and how to accomplish this goal. VA doctor suggested that I not get my hopes up for a possible transplant at University of Cincinnati. UC called for referral and as I hung up the phone, another nephrologist called to say that he would sign for me to get on the list. I’m Nashville bound late October. Ohio State University Eval mid October. UC bound mid October.

Now, just informed that the grant that pays for dialysis patients to have their Medicare B paid in order to have the insurance to cover transplants is NOT available to me because I am 100% service connected for my kidney failure and I must now pay $730/quarter in order to have the benefit of listing at the additional transplant facilities. My only option is VA Nashville to be fully covered and I previously waited 8 full years without one single call. The Dayton VA record for transplants has been only 3 in 15 years!

unquote

I donated my kidney and it did not cost me any money at all. The NHS paid for the operation and recovery check ups. I have annual renal check ups to make sure my remaining kidney is performing ok (it is) – doesn’t cost me anything. The recipient of my kidney – received it at no cost to them, the NHS covered the cost. At times we can complain about the silliest of things – yet this lady and many like her … struggle just to stay alive. This was a few years ago and I pray that things have changed for people in the USA.

Are you worried about what is involved if you consider donating your kidney to a stranger? Click on the link below to watch professionals and donors talk about the most common concerns that people have and give a realistic view of the life-long risks of being a living kidney donor. Click on the below link.

All about kidney donation

1000 donors so far since 2006. Brilliant news. More people read about donating to a stranger, the more it inspires others.

Read about the 1000th donor here
https://www.organdonation.nhs.uk/get-involved/news/milestone-1-000-people-in-uk-have-donated-a-kidney-to-a-stranger/?

NHS Organ Donation

Did you catch the latest episode of Surgeons: At the Edge of Life? It followed the story of Marcus donating a kidney to his wife, Tracey, and the incredible team at Addenbrooke’s Hospital in Cambridge who made it possible.

These words from Tracey to Marcus after the transplant are so inspiring: “I would say thank you but there are no thank yous in the world that do it, I wouldn’t be able to say it enough times.”

You can watch the episode again, using the link below. Please remember that this show features footage of live surgery.

https://www.bbc.co.uk/iplayer/episode/m001hsry/surgeons-at-the-edge-of-life-series-5-episode-3

When I decided to donate one of my kidneys to a stranger, part of the decision was based on the fact that there was no way I could guarantee donating after death. I mean it all depends on how and where you die as to whether your organs are recoverable.

What I did not bank on was finding out that I could no longer donate blood. That the chances of me being able to donate an organ after death, was remote. Why, because I had cancer. I had breast cancer recently and hopefully the mastectomy and tablets will prevent me from ever getting it again. But when I found out it affected donating – that really upset me. At the same time, though……. I felt so pleased, so happy, so grateful that I had been able to at least donate one of my kidneys before the nasty C descended.

So now, I take oestrogen suppressing tablets each day for around 5 years. Downside is that the menopause which I have already been through, is back 🙂 :). It is getting to winter so I clap my hands that I have my own built in central heating system and will save money on my energy bills. I knew something good had to come out of all this 🙂 🙂

God is watching over me. He gives me the strength I need to stay calm. Keep smiling and be thankful.

I am also forever grateful to our amazing NHS for helping to save my life and kicking that big C into the kerb. Thank you!! xxx

An introduction to Robotic Surgery in organ donation and transplantation
Zoom meeting Saturday 26th March 10:00am.

In this webinar Mr Prodromos Laftsidis, Consultant Transplant Surgeon at Portsmouth Hospitals University NHS Trust, will introduce robotic surgery for living kidney donors and transplant recipients. He will talk about the benefits and show what is involved in this procedure.

Born in Greece, Mr Prodromos Laftsidis remembers the first time he realised that he wanted to work in the field of transplantation. “My sister back in Greece had a kidney and pancreas transplant and I saw how her quality of life improved so dramatically. It was extraordinary.”

Mr Laftsidis (Makis) is currently a Consultant Transplant Surgeon at the Wessex Kidney Centre. He obtained his surgical training in Democritus University of Thrace (he also has a MSc from the same university and is completing his PhD, specialising in Hepatobiliary Diseases).

The webinar is suitable for anyone with an interest in the application of robotics in surgery or in kidney donor or recipient surgery. Please note the webinar will include filmed footage of surgical procedures. There will also be the chance to ask questions. You can also submit your questions in advance to info@giveakidney.org.

Read the full article here https://www.giveakidney.org/2015/uncategorized/events/ where you can also sign up for the Webinar. It is free to join.

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Free New event just announced:
ASK THE EXPERTS: LIVING KIDNEY DONATION
Saturday 14 November, 10am online via Zoom.
This is an opportunity for anyone considering living kidney donation or those going through the process, whether donating to someone you know, or anonymously to the waiting list, to have your questions answered by our team of experts.

If you might need a transplant and are considering living donation, the panel will also be able to answer any questions you may have (although, for obvious reasons, will not be able to give specific clinical advice for individual cases). We know that the process of thinking about donation can be very daunting, and many people have lots of questions and concerns before and during the process. We hope this event will be an opportunity to ask them in an informal and friendly setting. You won’t appear on screen and you can choose to remain anonymous should you wish to. There’s no pressure to ask, if you just want to come along to hear the answers to other people’s questions.

We will be joined by Paul Gibbs, consultant transplant surgeon, Queen Alexandra Hospital, Portsmouth, Dr Adnan Sharif, consultant transplant nephrologist (kidney specialist) at the Queen Elizabeth Hospital Birmingham and Lisa Burnapp, clinical lead for living donation, NHS Blood and Transplant. There will also be someone who has donated a kidney recently, who will be able to share their personal experience of donation. We are very grateful to all of them for their valuable time and expertise.

The event is free but we gratefully welcome donations to support the charity in helping achieve its mission ‘no waiting for a transplant for want of a kidney’. To make a donation please just click the donate button at the top of this page. Thank you.Please register in advance for this event by following this Zoom link: Click Here to Register

After registering, you will receive a confirmation email containing information about joining the webinar. If you would like to submit any questions to the panel in advance of the event, please email exec@giveakidney.org

From Give a Kidney Charity:

“Ecclesiastical Movement for Good awards.
The campaign will see 500 charities each receiving a donation of £1,000!

Anyone can nominate a charity to win one of the awards. It’s quick and easy to do and we’d be so grateful if you could take a moment to nominate Give a Kidney.

As you may be aware, the quarterly matching runs have been put on hold during the current crisis and so more people than ever are waiting for the kidney transplant they so badly need. When it’s safe to re-start the programme, we will need to re-double our efforts to raise awareness of the need for more altruistic living donors to come forward. Whether acting as the key to ‘launching’ a chain or whether they donate direct to the person most in need on the NHS waiting list, we need these donors more than ever.

An award from the Movement for Good would help ensure we are in the right position to be most effective when the immediate danger has passed and current restrictions are lifted.

To nominate us for an award of £1,000, please visit www.movementforgood.com and click ‘nominate a charity now’. Then enter our details. Our charity number is 1143576. The closing date for nominations is Sunday 24th May 2020.”

Thank you so much

Research published in Anaesthesia suggests that a “soft opt-out” system may increase consent rates for organ donation after death, which could boost the number of organs available for transplantation. To learn more please click on the below link ……

https://www.eurekalert.org/pub_releases/2020-05/w-sri050520.php

Unfortunately I could not make the meeting but was told afterwards I had been given an award for my work in promoting living kidney donation. I am so honoured to have received this award and totally took me by surprise when I was told.

I have met some truly wonderful people along the way – donors, potential donors, recipients, medical staff and everyone that is connected with living donation.

I still get very excited when potential donors contact me and so proud and honoured to be able to be there for them. When I hear that they have donated I cannot help but shed a tear of pure joy and happiness that someone has given part of themselves to help save another’s life.

If anyone is considering donating a kidney, either to someone they know, or to a total stranger – I am here for you. I found my donation process emotionally lonely as only someone who has donated can truly know how we feel inside 🙂 ….. to be able to share feeling with someone who “understands”, or just ask questions about the donation process, can be hugely helpful and I am here for anyone who wants to make contact. You can use the “contact” link at the top of the page to privately make contact if you wish 🙂

Again, I am soooo chuffed to get this award. I was not able to make the meeting but will be presented with it in the near future. All I could say when I was told was to keep repeating the word “wow” 🙂 🙂

Daily Mail reports:
The 1,000th transplant involving living kidney swap donors will take place this week.

The NHS runs a sharing scheme where people can donate a kidney in return for one for their friend or family member in need.

The scheme was set up in 2007 because people on the kidney transplant list had friends and family who wanted to donate their organ but were not a good match by blood group or tissue.

Now, if a patient enters the sharing scheme with their friend or family member, the pair could be matched with another couple in the scheme so that each recipient receives a kidney from the other’s friend or family member.

To read more click HERE

Worth a thought ……One  of the richest and most powerful men in Brazil, Thane Chiquinho Scarpa, made waves when he announced plans to bury his million-dollar Bentley, so he could drive around his afterlife in style. He received lots of media attention, mostly negative and was severely criticized for the extravagant gesture and wasting of a precious commodity. Why wouldn’t he donate the car to charity? How out of touch with reality is this guy? He still went ahead with the ceremony.

Moments before lowering the car in the ground prepared for the burial of his Bentley, he declared that he wouldn’t bury his car and then revealed his genuine motive for the drama: Just to create awareness for organ donation.

“People condemn me because I wanted to bury a million dollar Bentley, in fact most people bury something a lot more valuable than my car,” Scarpa said during a speech at the ceremony. “They bury hearts, livers, lungs, eyes, kidneys. This is absurd. So many people waiting for a transplant and you bury your healthy organs that could save so many lives!”

Will an opt-out system law work for England?

Interesting as I have always cited Spain as being a classic example of success with an opt out scheme. They are, after all, the World’s leaders in organ transplant numbers.

Reading this article sounds like had they got the infrastructure in place before the opt out came into play, they may not have needed the opt out. Just my interpretation. I wonder … does  England have as good an infrastructure as Spain? I know some is being put in place, but will it be good enough.

To quote from the article:

Spain is often cited as having the world’s highest nationwide transplant rates and they have an opt-out law. But, upon careful examination, their success is based on other factors. Spain’s law was enacted in 1979, but there was no measurable impact on transplant rates until after 1989, when a strong national organization was established, and significant resources were committed to provide support for highly trained intensive care physicians and nurses in transplant centers. Rafael Matesanz, the director of the Spanish programme since 1989, attributes Spain’s higher organ donation rate to the practice of these highly qualified physicians and nurses who always have a conversation with donors’ families to secure their approval before proceeding with organ removal. [4] While Spain has a legal opt-out system, it functions as an opt-in system, because the family is routinely asked for permission. Wales shifted to an opt-out law in 2015, but the number of organ donations has not increased, over the past two years.

To read the rest of the article click on this link: Will an opt-out organtransplant law work – BMJ

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Here is a link to NHS Organ Donation. Lots of useful information about living kidney donation

Living Kidney Donation

Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

— Robert N. Test

Don’t take your organs with you – Sign the Register
and save a life !

NHS Organ Donation Register

Very interesting article on the  BBC News website

The NHS has released figures revealing that 457 people died in England last year while waiting for an organ transplant.

Doctors’ union the British Medical Association (BMA) and politicians alike have called for an opt-out system to be adopted in England, where people’s consent to donate their organs after their death is presumed unless they have explicitly said otherwise.

This system is currently in force in Wales and in a number of other countries throughout Europe.

In a recent Parliamentary debate on organ donation, Labour MP Dan Jarvis said: “England must now move to an opt-out system. The evidence is clear – hundreds of people a year are paying a price of us not doing so.”

But there is a lack of evidence to support this claim.

Presumed consent

In Wales, where an opt-out system was introduced in December 2015, there has actually been a small dip in the number of deceased donors, from 64 in 2015-16 to 61 in 2016-17. This resulted in a drop in organ transplants from 214 to 187 respectively.

This is not to say the opt-out scheme is having a negative effect – some fluctuation is to be expected – but so far, despite the claims, we don’t have any evidence that it is having a positive effect.

The BMA says it believes that over time such a scheme would lead to an increase in organ donation.

The Welsh government is in the process of evaluating the scheme and plans to publish a report by the end of this year.

One concern raised by Dr Margaret McCartney, a GP, in a paper for the British Medical Journal is that the Wales model of organ donation creates a group of non-donors who did not exist before.

In the English system there are two groups of people: those who have opted in and registered their wish to be a donor, and those who have done nothing whose families will be asked to decide.

In Wales there are now effectively three groups of people: those who have opted in and so registered their wish to be a donor; those who have done nothing for whom it is assumed they are happy to donate their organs, but it is still ultimately for their family to decide; and a third group who have opted out and so expressly registered their wish not to be a donor.

As it currently stands, 6% of the Welsh population has opted out of organ donation. This is a group of people who in an opt-in system were still potential donors, depending on their families’ wishes – they may not have ended up donating organs, but we just don’t know.

Spanish system

There is correlation between countries having opt-out schemes and having a higher number of organ donors.

But the countries which have the most donors per head combined the introduction of their opt-out schemes with other changes, like better infrastructure, more funding for transplant programmes and more staff working to identify and build relationships with potential donors before their death.

Spain is often touted as an opt-out scheme success story.

So-called “presumed consent” legislation was passed in 1979 but donor rates only began to go up 10 years later when a new national transplant organisation was founded which co-ordinates the whole donation and transplantation process.

The legislation is also not strictly enforced since families are always consulted and have the final say.

However, opt-out schemes don’t always translate to increased organ donor rates. In Sweden, for example, such a scheme has been in force since 1996 and it remains one of the lowest-ranked countries for organ donation in Europe. Luxembourg and Bulgaria also have opt-out systems and low rates of organ donation.
Declining rates

In France and Brazil, variations on a “presumed consent” system actually led to a decline in the rate of organ donation.

Another difficulty in assessing whether opt-in or opt-out schemes are driving different countries’ donation rates is that these schemes take different forms across the globe.

In both Spain and Wales, families of potential organ donors are always given the chance to refuse. But this is not universal – Austria and Singapore both have “hard opt-out” systems where those who have not opted out are presumed to have consented to organ donation regardless of their families’ wishes.

And there are other differences, for example in Israel a priority incentive scheme means those who have agreed to donate their own or a deceased family member’s organs are given priority on transplant lists should they themselves need an organ in the future.

In “hard opt-out” systems there were increases in the organ donor rate of up to 25%.

Original article found here
http://www.bbc.co.uk/news/health-41199918

Organs from 505 registered donors could not be made available for transplant in the last five years because of objections from relatives.

BBC 5 live found that almost a third of families blocked organ donation because they felt the process took “too long”.

The law states that consent lies with the deceased, but in practice, relatives’ wishes are always respected.

The NHS wants to reduce the number of “overrides” by encouraging prospective donors to talk to their relatives.

In England, NHS figures showed that 457 people died last year whilst waiting for an organ transplant.

To read the rest of the article please click on this link from the BBC  http://www.bbc.co.uk/news/health-41671600

Every patient waiting on a kidney transplant in Scotland is to be sent an information pack telling them how to get a living donor in a bid to reduce the current waiting list.

At present there are more than 400 people on the transplant list, facing an average wait of up to three years for a kidney from a deceased donor.

This latest move by the Scottish Government is part of a national drive to increase awareness of the possibility of donating a kidney to someone in need of a transplant, whilst still alive, either to a loved one or a stranger.

Over the last ten years, more than 500 people in Scotland have become living kidney donors, with figures highlighting 86 people donated in 2016-17 alone. The information pack has been designed to inform patients of the different routes to living donation and reinforce that a successful kidney transplant from a living donor is the best treatment option for those waiting, as the kidney tends to be healthier. It features the perspectives of donors, recipients and various clinical specialists working to ensure each transplant is as successful as possible.

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Interesting idea …. read more about it here  Living Donor Scheme

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From the Guardian by an anonymous donor.

“Why I donated one of my kidneys to a stranger – it wasn’t a difficult choice”

Non-directed altruistic kidney donation. An unlovely term that means giving one of your kidneys to a stranger. I’d always known this was a thing but I’d thought it was a bit weird, a bit excessive, like donating an arm. Why not just stick to blood donation?

I’d last come across the idea in Larissa MacFarquhar’s 2015 book Strangers Drowning which had the alarming subtitle “Voyages to the Brink of Moral Extremity”. It’s about ultra do-gooders who make normal people feel uncomfortable or worse. Which may be part of why they do it.

MacFarquhar’s subjects include people whose sense of the world’s suffering leads them to give all their possessions away, live like vagrants, move to impossibly dangerous parts of the world. The help they provide for the poor seems questionable, but there is no doubt about the harm they do to themselves and those around them. Among these extremists are altruistic kidney donors. Many people, she says, “particularly doctors” (she’s writing about US doctors) find this donation “bizarre even repellent”. The brink of moral extremity did not sound like a place I wanted to go.

In October of last year I was in the car with my wife and we were listening to a podcast in which a speaker used kidney donation as an example of a contract that can’t be enforced. Almost irrelevantly he said people’s queasiness about the subject isn’t really rational: we don’t need two kidneys, the operation is safe and the benefit to the recipient huge. I immediately thought: if that’s true, it sounds like a good idea.
Would you give your kidney to a complete stranger?

Read more here —-
https://www.theguardian.com/society/2017/may/20/why-i-decided-to-donate-one-of-my-kidneys-to-a-stranger

The radio programme I mentioned back in January is being broadcast tonight (repeated Sunday 5pm).

BBC R4 at 8pm Organ Beauty Pageant – UK patients who need a kidney use social media. Is it fair?

http://www.bbc.co.uk/programmes/b08nq6fh

Quoting from the page linked above

Is it fair to find your own kidney donor on the internet? UK patients who need new organs are using social media to advertise their plight and appeal directly for a Good Samaritan who’s willing to share their spare kidney with a stranger.

As Lesley Curwen discovers, the development of such appeals on social media has caused consternation among some in the transplant community. They fear a competition to attract donors amounts to an unsavoury beauty contest, in which only the most plugged-in and tech-savvy can participate.

But for Nicola Pietrzyk from Leicester, turning to social media and Facebook was a no-brainer. Her 11 year old son, Matthew had been spending 12 hours a day on dialysis, waiting for years for a possible donor from the NHS list. She’s convinced that if she hadn’t launched A Million Likes for a Kidney for Matthew, a kind-hearted stranger would never have offered her son a new kidney, potentially saving his life.

The campaign prompted several prospective donors who weren’t a match for Matthew to go on to donate to others and Alison Thornhill tells Lesley Curwen why she went on to do just that.

But the likelihood that individuals, motivated by a particular story on social media, will in fact be a match for their intended recipient is slim, and Lesley hears from transplant teams frustrated that NHS resources are sucked up by high profile campaigns that attract many volunteers, all of whom need to be tested, most of whom won’t turn out to be a possible match for the recipient.

Dr Adnan Sharif, consultant nephrologist at Birmingham’s Queen Elizabeth Hospital, was closely involved with several high profile media campaigns and he admits that he and his team were at times completely overwhelmed by the demands that multiple volunteers, each offering to donate a kidney to a named individual, placed on the unit.

While he acknowledges that such social media campaigns are legal and after the guidelines were changed, were accepted by the transplant community, he admits to mixed feelings about the outcome. He and his team are delighted for the individual who has a new kidney, but uncomfortable about diverting resources from patients who are waiting for an organ through the traditional routes, from deceased donors or through the NHS Living Donor Scheme where altruistic donors place their trust in the transplant authorities to pick the best match for the kidney they’ve donated.

So the transplant community in the UK has come to terms with social media campaigns for organs from strangers, even though there’s a clear preference for the NHS altruistic donor scheme. But Lesley discovers another internet innovation: websites that allow kidney patients to advertise for a prospective donor, have been frozen out as clinical teams have voted with their feet and refused to deal with them.

An American website, matchingdonors.com, launched in the UK in 2012 and sent policy makers and clinicians in the organ transplant field into multiple huddles.
The final ruling was that websites like this could operate as long as no fees were paid (matchingdonors.com didn’t charge UK kidney patients a fee but they do charge $595 to USA patients for a lifetime membership). Over 100 UK patients and over 300 UK donors were registered at the site.

But as Lesley finds out, in five years, not one transplant has happened through this website. Patients told her their transplant teams simply refused to deal with it, and the former chair of the ethics committee of the British Transplantation Society, Professor Vassilios Papalois, argues that clinicians have autonomy and if they’re not comfortable with the idea of a matching organ website, they’re under no obligation to proceed. He finds the idea of a matching website ethically objectionable, he tells Lesley, and he wouldn’t personally sanction it either.

For anyone unsure about Matching Donors company, here is a long post I did about them back in 2012

http://livingkidneydonation.co.uk/questions-for-matchingdonors-com/

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Download the (pdf) newsletter of the charity Give A Kidney – one’s enough

You can download their Spring 2017 newsletter (pdf)  from the link below. Full of interesting information.
Please share the link so as many people as possible can see what is going on with the charity. Never know people may want to become a member 🙂

Give a Kidney Charity – Spring Newsletter 2017

To find out more about the charity go to their website at www.giveakidney.org

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I have been contacted by Alex Brockman who is a researcher for a TV production company called “Twofour Broadcast”, on a returning series presented by Davina McCall called ‘This Time Next Year’, and they are looking for applicants to share their story. Although the request is for me to circulate amongst potential kidney donors/recipients in my organisation, really any inspiring story that is a life changing episode in someone’s life would be worth their consideration. There is a link towards the end with a clip of series 1 etc.

“The show is based on people making a pledge to the nation of something they would like to achieve by this time next year. We hope to follow people’s journeys throughout the year to see them making progress and hopefully fulfilling their goal and ambition. We would like to cover a whole range of subject matters, featuring inspirational people at the start of life-changing transformations, and in turn inspire others watching who may be in a similar situation to attempt to overcome obstacles and achieve their own goals.

As we were hoping to include some more pledges about people’s lives being transformed due to amazing treatment/surgeries. We are looking for people hoping to find a donor, or family members planning on donating a kidney to a loved one in need.

Here is a link to a press release on stories from series 1, and a short clip: http://www.itv.com/presscentre/ep1week44/time-next-year. ”

If you feel you may want to be on the programme please contact Alex …..
alex.brockman@twofour.co.uk
or
0207 427 8436

The closing date for applications is 5th May with selection/filming shortly after. Sooner one applies though the better. This is ONLY for UK residents.

UK – Would you like to take part in a documentary? I was contacted by Fiona Hill a producer for the BBC Science Unit. A documentary is being made about altruistic donation and in particular looking for recipients via social media such as Facebook. This is the message she has asked me to post. All communication is confidential and contacting Fiona by no way commits you to taking part in the documentary.
Fiona is a lovely lady, very easy to communicate with and she looks forward to receiving emails from anyone who might be interested or would like to know more.

Fiona Hill a producer for the BBC Science Unit is making a documentary about altruistic living organ donation for BBC Radio 4 and she would love to hear from you.

Talking to her doesn’t mean you have to be in the programme, but she really wants to hear from those of you who have used social media (or are planning now to launch a campaign) to appeal for an organ donor.

She would also very much like to talk to people who have in the past donated an organ to a complete stranger, inspired by appeals they have seen on social media, or perhaps somebody who is currently going through the process of offering to donate an organ to somebody in need.

You could contact Fiona by e mail at fiona.hill@bbc.co.uk and she is very happy if you would like the conversation to remain confidential.

Wales organ donations rise in year after consent law

The Welsh Government says more lives have been saved since Wales became the first country in the UK to introduced a deemed consent system.

Adults are regarded as having allowed organ donation unless they have opted out.

In the last year, there have been 160 organs transplanted and 39 were through deemed consent.

BBC article on Wales organ donation

300 people die each year in need of a kidney. You probably have two healthy ones. Could you #ShareYourSpare ?

I gave – could you?

http://www.bbc.co.uk/news/uk-england-tyne-37025389
(click on link for video and pictures)

A woman with a 100-year-old kidney has credited its longevity on coming from “good stock”. She would know – it came from her mother.

Sue Westhead was 25 when she was diagnosed with kidney disease in 1973.

When told a transplant was her only chance of survival, her mother Ann Metcalfe, then aged 57, donated her kidney to her daughter.

Now Sue, 68, and her kidney are “still going strong”, defying medical predictions over the organ’s lifespan.

A small, friendly group of people, in Scotland, have come together to help promote non-directed (altruistic) kidney donation.

Colin posted this as a comment on one of my posts on this website.

Following an initial meeting in Edinburgh with Susan and Pam, we had another meeting last night with donors Chris, Kate and John, and recipient Gus, and as a result have formed an informal group to raise public awareness of altruistic kidney donation in Scotland. We are mostly based in the east, but are happy to include any Scots that wish to join us, and help expand our horizons. We have plans to make presentations to small groups/clubs such as Rotary and WI, but in time we hope to involve the press and broadcast media. The tenth anniversary in September of the change in the law may prove a useful hook for media coverage. The media being what they are, it would be useful to have a well-known personality (either donor or recipient) on our team.

Although we have no official affiliation, we will probably try to work with giveakidney.org, and will also promote your website. Incidentally, that’s a great piece about your donation on their website.

We’re just starting, and have a lot to learn, but our long term aim is to match the number of Scottish donors to the number on the waiting list – quite a challenge! We realise, incidentally, that kidneys are matched throughout the UK, not specifically in one area; it’s just a convenient way of setting a target.

We’d like your help in encouraging other Scots donors (and recipients) to join us. Everyone can help in their own way, be it in giving talks to small groups, being available for one-to-one meetings, helping with distribution of literature, or advising on promotions. We’re a very friendly group, and all of us have found it really enjoyable being able to share our experiences with each other. From there it’s a small step to sharing with others.

Take care,

Colin.

If you are interested in joining them, or want further information, please contact Colin on
haggis{at}acme-properties.co.uk
please replace the {at} with @ …… putting the email in full would attract the spammers unfortunately.

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I donated a kidney to someone I did not know. All I knew was that there were thousands of people out there in need a new kidney as their health was really suffering. I had two kidneys – one of them was a spare. Why wait until I am dead, in the hope my organs would still be viable. I wanted to make sure at least one person benefited now.

It is not just the recipient who benefits from a kidney transplant. It is their whole family! What must it be like to be the spouse, parent, child, best friend etc of someone who you know, just watching them day after day ….. praying they get the life saving phone call to say there is a kidney available.

What must it be like for the person knowing they cannot have as much water as needed when thirsty – because their kidneys cannot process it. Even foods with liquid have to be monitored – fruit, vegetables etc. I am no expert on what is required to keep alive when on dialysis. I just know, having spoken to some people who are – it reduced me to tears. I said to one person “I don’t think I could live the life you live, year after year, with such limitations on what you can eat/drink. Spending three days a week travelling/hooked up to dialysis, week after week, year after year.  The fact you cannot stray too far away in case that life saving phone call comes”. I felt humbled, and ashamed, when he said “you have no choice – you either want to live or you don’t”!

People ask – why should I donate when the family are not! Very simply, just because they have family, does not mean the family are a match. It is more than just being a compatible blood group. Also a lot of people needing a new kidney is because they have a hereditary illness that causes the kidneys to fail. So family members also can have this. Many reasons why someone, other than family, needs to be the donor.

A question I am sometimes asked is why does someone need a kidney when they have dialysis to replace the kidney?

I have to say I was so guilty of that assumption pre donation!! You see pictures in the media of people on dialysis, and to be honest, so often the person looks very healthy as though dialysis is the perfect solution.  I still feel so guilty when I realise how wrong I was. Dialysis is a life support machine. No more, no less. It helps keep people alive until they can get a new kidney. It does NOT replace a kidney, far from it.

So if the thought ever crosses your mind about donating a kidney to someone – anyone – JUST DO IT! It will also be the most rewarding experience you could have.

Read the links on the left of this page under “Become a Donor” to find out what it is like and what the process is. Any questions, just comment on this post or send me a message via the Contact Page – link at top of this page.

I take a personal interest in anyone who wishes to donate and will stay in contact with them, and support them throughout the whole process.

My only regret about donating, is that I have no spare kidneys left to donate. If I had, I would – in a heart beat. I just pray when my time comes to meet my Maker – that my remaining organs are viable and can go to helping other people.

Please sign the organ donor register.

Please consider donating a kidney to someone during your lifetime. Don’t think your age will be against you – people in their 80’s have donated.

To all reading this who are waiting for an organ transplant, or know someone who is – stay strong! Your time will come.

I find it interesting whenever the subject of paying donors for their kidney – the subject of Iran comes up. Iran is the only country where they legally pay their citizens to donate a kidney to another Iranian citizen. News reports praise their scheme saying they do not have any waiting lists for kidney transplants. BUT – which media reports are to be believed. Here are two links re the Iranian kidney donation system. Are these to be believed? Who knows, I have not had the time to investigate to decide. I know at the very bottom of this link it shows the “official” waiting list for transplants in Iran.

I have also read reports that it is still only the rich who benefit. The poor living in outlaying villages who have no money are not even on the waiting lists as they cannot afford to even travel to the hospitals, or if they can no way can they afford the required medication needed after a transplant ……

There are many myths surrounding the Iranian system – which to believe and which not – I am going to try and find out. So if you hear/read of anyone saying paying donors to give a kidney gets rid of waiting lists – look at Iran – then send them to this link.

I am not after debating whether donors should be paid or not, that is an entirely different post altogether. This is about the possibility of media/people implying tht paying donor for their kidneys solves the kidney waiting list.

The case for Iran – to me – is far from proven. I am not saying the information on the link below is 100% correct. This is just it. Which media information we read is correct? I am hoping to find out.

Please read this link: (.pdf) Incentives, kidney donation, and the myth of the Iranian waiting list

Being a living kidney donor is not for everyone. Hopefully my website will show people what being a live donor is like. After reading the links down the left under “Become a Donor” it will inspire some people to want to be a living donor. If that is the case I would love to hear from you 🙂

BUT – there is nothing stopping most people signing up to the organ donor register. It DOES make a difference. Read this story about a lovely lady who received a kidney when she was 19 years old. 31 years later – yes 31 years – that same kidney is working well.

This is truly an inspiring story
http://www.itv.com/news/wales/2015-08-17/glorias-story-organ-donation-turned-my-life-around/

This is a research project for the United Kingdom only

Many people who contact hospitals because they are interested in donating a kidney altruistically (i.e. to a person that they do not know) do not end up completing their donation.

The University of Plymouth is undertaking research, led by Clinical Psychologist Dr Alexis Clarke, aiming for a better understanding as to why this is, by focusing on the influence of family and friends.

They are looking for altruistic donors or potential kidney donors, and those who have decided not to proceed, to participate in an interview-based study. They would also like to speak with any family members or friends who had a significant influence over their decision to donate or withdraw.

They hope the results will have a direct impact on the assessment and care of future altruistic donors. They would like to produce written information that targets family members’ concerns directly.

The interviews will take around one hour, after which interviewees will be sent a summary to comment upon. Participation is entirely voluntary.

This project is being funded by the British Renal Society and British Kidney Patients Association and fully supported by Give a Kidney.

Please contact Alexis Clarke, Clinical Psychologist for more information, on alexis.clarke@plymouth.ac.uk or by telephone 07940729500. Alternatively you can write to University of Plymouth, Faculty of Health and Human Sciences, Rolle Building, Drake Circus, Plymouth, Devon, Pl4 8AA.

Please help to support this important project.

Altruistic Kidney Donor Stats – 2007 – end 2014

For year end April

2007 – 2008 = 6 donors
2008 – 2009 = 15 donors
2009 – 2010 = 15 donors
2010 – 2011  = 28 donors
2011 – 2012  = 34 donors
2012 – 2013  = 76 donors
2013 – 2014  = 118 donors
April 2014 – Dec 2014  = 77 donors

TOTAL: As at end December 2014
there had been 369 altruistic kidney donors.

Each year the numbers increase considerably. I am so excited by the number of people who are now donating.

Let’s hope we continue to see this increase in donors each year.

Mainly aimed at my USA readers, anyone living near to the Arden Theatre in Philadelphia, PA then this is for you.

Playwright Michael Hollinger has produced a play on the comic aspects of a kidney transplant.

Sometimes it takes comedy to get the message across. Now, of course I have not seen this production but am assuming it will be well received and word will spread.

Now we just need someone in the UK to produce a similar play for the West End and to travel around 🙂 …….

If anyone gets to see this play, would love you to report back on your views and whether it has had any positive impact re kidney transplant/donation etc.

Under the Skin, which will begin previews Thursday and run through March 15 at the Arden Theatre, Philadelphia (USA) –  is the result of Hollinger’s deep dive into the world of organ donation – a months-long process of interviewing local donors and recipients and examining the fraught interactions that arise when a person is asked to hand over a chunk of her own precious tissue.

You can read more here – Under the Skin by Michael Hollinger

Come on! Any UK playwrights out there want to do something similar over here? …. don’t be shy 🙂

I donated one of my kidneys to a stranger at the Churchill Hospital in Oxford.

The lead Living Donor Co-Ordinator is a wonderful lady called Sandra Dix. One word comes to mind when describing her and the whole team – AMAZING.

Here is a news article on Sandra and her dedication.  She is not alone in her dedication, as transplant teams across the country also have very dedicated teams looking after donors/recipients. Lead Nurse Sandra Dix

Please consider giving the “gift of life” and donating a kidney to someone. Either someone you know, or a stranger.  It is a gift you will never regret giving. I just wish I could give that gift again. Well actually hopefully I can after my death. My remaining kidney could go on to save someone. So it is equally important to sign the organ donor register.  Make that a gift this Xmas …. sign the register 🙂 – you can select which organs you would like to donate. Click here to be an organ donor

Thank you !

Are you considering donating a kidney either to someone you know or to a stranger?

If so you need to read these pages. You can ask your hospital all the questions you want. But unless the person you are speaking to has actually donated a kidney themselves – they will not know the answers to some of the questions.

Here on Living Kidney Donation website,  you will read a full account of what it is like being a kidney donor.

From the very first appointment “kidney donor evaluation begins” right through every stage of the evaluation, including the operation itself and recovery in the hospital and then recovery at home.

Please also read any comments made on posts as they contain valuable input from other donors or potential  donors.

There are many other links on the site …. all with useful information.

If you want to ask any questions please either post in the comments section below, or if you prefer to keep any questions private, then please contact me via the contact link at the top of the page.

Donating my kidney was the best thing I have ever done. Knowing there is someone out there whose life has totally changed and they are now able to live a full life with their family – is wonderful 🙂

So far since altruistic donations started over 250 donations have been made. That is amazing.

In the UK between 1 April 2012 and 31 March 2013:

• 4,212 organ transplants were carried out, thanks to the generosity of 2,313 donors.

• 1,160 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney or liver/pancreas transplant.

• 3,052 patients’ lives were dramatically improved by a kidney or pancreas transplant, 166 of whom received a combined kidney/pancreas transplant.

• A further 3,697 people had their sight restored through a cornea transplant.

• A record number of 749 kidney transplants from donors after circulatory death took place and accounted for one in four of all kidney transplants.

• 1,068 living donor kidney transplants were carried out accounting for more than a third of all kidney transplants. ‘Non-directed’ living donor transplants (also known as altruistic donor transplants) and paired and pooled donations contributed more than 130 kidney transplants between them.

• Almost 1,012,000 more people pledged to help others after their death by registering their wishes on the NHS Organ Donor Register, bringing the total to 19,532,806 (March 2013).

Wishing you all a wonderful Christmas and I so hope 2014 will be a great year for many of you.

Thank you so much for your support of this website. It makes my day when I receive a comment or someone contacts me through the website wanting more information or support through their donation experience.  I love also hearing from recipients, or family members of donors or recipients. Thank you all so much.

I also want to pass my thanks on to all those involved in the kidney donation process. Not just the front line i.e. doctors, co-ordinators, nurses etc  but all those that help to keep the hospitals running smoothly who perhaps we never even get to see.  I have always said, donating a kidney is a great team effort. Without the medical people, caterers, cleaners, administration  and everyone who works at the hospitals – we would not be able to donate.  I cannot list everyone who is involved as to be honest I know there will be some I will leave out – because I don’t even know they exist as their work is behind the scenes.! Great thanks to them and everyone.  you are all so truly appreciated.

People wonder whether Miracles exist – if 200 years ago someone said “one day we will be able to take out an organ from a living person and put it inside another living person – and they will both continue to live” – I am sure they would have been shouted out of town as a mad person. Yet here we are today with this great Miracle happening.  What will the next 50 years bring …..  I find it exciting just thinking about it as I am sure there are huge medical breakthrough that will happen during that time.

For those first timers to this website – thank you for visiting. To find out what it is like being a kidney donor, please check out the links top left of this page under the heading “become a donor”.  I do so hope I can inspire someone to consider donating a kidney, whether it is to a family member or friend who is in need of a kidney – or whether you feel you just want to help anyone – no matter who.  I have never regretted once my donation and only wish I had more spare kidneys as would so willingly donate again.   What greater gift could anyone give or receive.

So … everyone have a really wonderful Christmas and after years and years of trying to find the proof that Santa exists – he was spotted the other night …….. I will leave you all on this wonderful picture to bring smiles and chuckles from many .

Proof at long last

Proof that Santa really does exist