Author Archives: Lou Devine

We’re delighted to announce that we have been awarded significant funding for a new five-year programme around living kidney donation.

Kidney Research UK, the country’s largest kidney research charity, will join forces with the Give a Kidney team to deliver the programme. Together,
the two charities will deliver the UK-wide programme, from helping more people understand what it means to be a living donor, to supporting them throughout their donation journey.

The programme has been made possible thanks to the vision and support of businessman and philanthropist Dr David Dangoor, who has personal experience of living kidney donation, having previously donated a kidney to his brother Robert.

Kidney Research UK and Give a Kidney will also be working with NHS Blood and Transplant throughout the planning and delivery of the programme.

Worldwide, kidney diseases are the tenth most common cause of death and in the UK more than 5,000 people are currently on the waiting list for a kidney transplant, which equates to over three quarters of people waiting for a transplant. Despite ongoing work to encourage kidney donation from both living and deceased donors, around six people still die each week waiting for a transplant.

Bob Wiggins, Chair and Trustee of Give a Kidney, said: “This is a milestone moment for Give a Kidney and one which is the culmination of much of the work undertaken over the past years by ourselves and our previous staff and trustees. This programme will allow us to amplify much of the work we already do to raise awareness and support potential donors, but with significantly increased resources behind it and will also give us the opportunity to take a significant step forward with new activity. We are thrilled to be working in partnership with Kidney Research UK who bring a wealth of expertise, knowledge and skill to the new programme.”

Dr Dangoor, who is known for his philanthropy in areas including education and health, said: “The growing rate of kidney disease here in the UK and across the world means that every day, lives are lost to this awful condition. Having donated a kidney to my brother, I know first-hand that it is perfectly possible to do this and to carry on living a normal life. Through this campaign, I hope that more people are able to learn about the possibilities of living donation and may be inspired to take that step and change the life of someone living with kidney disease. Our ultimate vision is that no one should die waiting for a kidney.”

Sandra Currie, Chief Executive of Kidney Research UK said: “Donating a kidney is literally giving someone the gift of life and many people may still not be aware that they could donate a kidney to a loved one or a stranger and carry on living a normal life. We are committed to driving progress in kidney health in the UK and to transforming treatments for patients, and receiving a kidney donation transforms the life of the recipient. We know that an increase in the number of living donors coming forward could make a lifesaving difference to kidney patients across the UK, and significantly reduce the waiting time for many. We are all so grateful to Dr Dangoor for making this campaign possible.”

Work is now underway to develop the programme, and new resources for donors, in collaboration with key stakeholders and the wider donation and transplantation community.

Many years ago I worked for Social Services and had two clients who both required organ transplants. One, an older gentleman who had had a kidney transplant which had enabled him to continue working; the other, a young man who was waiting for a heart transplant. He died before a heart became available leaving a wife and two young children.

Headshot of Sarah smiling

Since then I have known people who have had kidney transplants so know what a life-changing experience it is for them. I also know mothers who wanted to donate for their children and the great disappointment when they were not able to. I always wondered why only family members could donate so when I picked up a Give a Kidney leaflet about non-directed living kidney donation I immediately knew that was what I was going to do.

Unfortunately the Covid pandemic slowed things up a bit but once I had my initial meeting with the transplant team, things moved very quickly to get my various tests done. One of the team at Give a Kidney was able to talk me through the various stages, which was a great help as I had not told anyone except my husband what I was doing.

I found the whole process of going through the tests interesting and everyone was so friendly and encouraging but I never felt pressurised into going ahead with the operation. I was originally going to donate into the UK Kidney sharing scheme to trigger a chain of transplants, but unfortunately the chain was unable to proceed. Instead, I donated directly to an individual on the transplant waiting list.

On the morning of my operation, my living donor nurse visited me on the ward and walked down to the operating room with me and visited me each morning while I was in hospital. I felt great the day after the operation but unfortunately was sick the following day and nauseous for a few days afterwards.

Once home my recovery was quite quick and a few months later I was back to doing everything I had done previously. The response from friends and family since the operation has been very positive and having been told that the kidney had been successfully transplanted into the recipient I am so pleased and feel lucky that I am well enough to have been able to donate a kidney.

I work as a Research Manager in a large London university. I have been a blood donor since I was 17 and participate in many research trials at work and I have always enjoyed helping people in this way. It felt very natural to enquire about altruistic donation. In fact, quite a few people were not very surprised when I told them I was doing it! I did consider waiting a few years, but after some consideration, I decided that right now was a good time for me – I had no dependents to look after during the recovery process and was able to work from home, instead of rushing back to the office.

From my initial enquiry, the whole process took just under nine months. I found the whole work up and tests incredibly interesting and I feel quite the nephrology expert now! Tests included blood and urine tests; an ultrasound; MRI scan; ECG test; chest x-ray; and glomerular filtration rate test. I also had a telephone consultation with a psychiatrist and an interview with a representative from the Human Tissue Authority.

During the test checking how evenly my kidneys worked, the team was unsure if I would be able to continue – the test showed that my right kidney did over 60% of the work. This is usually a reason that donation cannot go ahead. However, the team decided to perform the MRI scan, to see if this revealed any reason for my left kidney being less strong. The test showed that the kidney was fine anatomically and would be suitable for donation, though this would mean I was classified as a ‘complex donor’. Luckily however, I was matched in my first run in January, to go into the kidney sharing scheme.

It was then a wait for a suitable surgery date. I found out two weeks before it was scheduled – it then felt very real, arranging sick leave with work and letting friends and family know the date. Yet this anxiety calmed in the days before my surgery, and I felt mentally prepared and fully supported on the morning of the surgery. I was staying with family who live close to the hospital – unfortunately in a case of spectacularly bad timing, my parents were on a flight whilst I was in theatre! I imagine that is not a flight they will remember fondly…

It was my first time staying in hospital and I was looked after very well, from the staff that took an inventory of the belongings on arrival, to the anaesthetist that reassured me on having general anaesthetic for the first time. I woke up a little confused, but luckily not in a huge amount of pain. I stayed in hospital for just one night. I was informed that the kidney had started working straight away in the recipient, which was a huge relief.

I was told my kidney was highly admired when it was removed which was a lovely compliment!

The first week out of hospital was tiring, and I struggled with a lot of bloating due to the strong painkillers, but once I was on light painkillers only, I felt much better. I started back at work two weeks after the surgery, but working from home only so I could rest when needed, and on shorter hours.

I had hand-assisted laparoscopy surgery: two small incisions on my left hip and a slightly larger one in the middle of my abdomen. They have all healed well – though not having a bath for two weeks was tough! I took a daily photo to check they were healing OK, and it is fascinating to look back and see how the body heals in such a short space of time.

My friends, family and colleagues were incredibly helpful, kind and generous, and I have really appreciated how supportive people were during my recovery. People have been really interested in the process. It’s been great being able to bring more awareness about non-directed donation. My living donor coordinator passed on a message from the recipient the day after the surgery to say thank you – that was lovely to receive, and I am so pleased that everything went to plan. I have even more respect and admiration for the coordinators, nurses, doctors and surgeons who make transplants possible.

For me, the experience has been extremely positive – the donor team were incredible, always keeping me well informed and easy to contact when I had queries.

They always made sure I had even the smallest bit of information, so that I was able to make a considered and informed decision. Everyone at the hospital was excellent during my stay. I have also learnt a lot about myself and my own health as well – and would do it again in a heartbeat (if I had another kidney to spare!)

I would strongly encourage anyone with an interest to get in touch with their local living donor team – you are never under any obligation to go through with the donation, but if you decide to go ahead, you won’t regret it.

GP Rich, donated his kidney to a stranger in 2022, after reading about ‘effective altruism’ in an economics book.

I live in Nottingham, but originally from Halifax in West Yorkshire. I moved down to Nottingham for medical school in 2007 and I finished my medical school training there and did my junior doctor work in Mansfield and Derby and qualified as a GP in 2017 and I’ve been a GP since working in and around Nottingham.

I first heard about non-directed altruistic kidney donation in 2017 in a book about economics, ‘Who Gets What and Why’ by a Nobel Laureate called Alvin Roth, and he talked about different types of markets and in particular matching markets. This was the first time I came across kidney donation to strangers and it was in an American context and it just sparked my interest.

I found it quite unusual that I was in the medical profession myself and didn’t know about this until I came across it in an economics book and when I looked it up online on the NHS website and found that we have a similar scheme in the UK and indeed we have for for a few years now.

I’d just qualified as a GP and I had a new job and wanted to get settled into the profession but it never disappeared, it was always in the back of my mind. It was something that for some reason I was just compelled towards doing right from the the moment when I discovered it in in the economics book. I was amazed that I hadn’t heard about it before and that I didn’t know anybody who had done anything like that and for some reason it it just struck me like this is something that will feature in my life at some point but at that point it was not the right time because of my new job.

Then two years later when I felt more settled into my clinical role it just became more of an appropriate time for me to go ahead. So I re-made contact with the donation team at my local hospital, Nottingham City hospital and advised them: “I’ve thought about it for two years now and I’ve spoken to lots of friends and loved ones about it and it seems like it’s something that I want to proceed with”. That’s when appointments were made and investigations were booked and it went from there.

After I returned to the UK from Ukraine that’s when I asked them to continue with the build-up and I was put into a matching run and matched in an altruistic donor chain with three recipients. Leading up to the operation I had some more blood tests met with the surgeon again met with the anaesthetist for a pre-op assessment and the op went ahead. Very soon after the operantion, I was able to get out on on walks every day, going uphill gradually increasing the speed and the distance that I walked.

In recent weeks leading up to the operation I was quite keen to proceed and almost excited to just do this thing because I’d been wanting to do it for so long. Now that it has happened it feels quite normal. I certainly don’t feel like a different person; I feel very satisfied that I’ve finally done this thing and I was lucky enough to match into an altruistic donor chain of three people. We’ve we’ve heard from the hospitals in which the recipients had their donations that they’re doing very well and that’s the only reason that I decided to do this in the first place. That obviously brings an immense feeling of satisfaction as those people, whoever they are, no longer need dialysis three times a week and they can hopefully go about their lives in the way that they that they they would do whatever that involves for them. So that brings me a great sense of satisfaction but beyond that I feel just like I used to. It certainly doesn’t feel like a big thing to me.

People have said things like ‘you’re very brave’ or ‘very generous’ but it certainly doesn’t feel like anything unusual to me and I think that’s a part of the message that I wanted to put out there which is I’m a 34 year old guy, I’m pretty normal – I like football I’ve got friends, I’m a normal guy and this is something that a lot of people might realise that maybe that is something that they want to do in their own lives as well.

I’d say that donating a kidney to a stranger is is a big deal but a temporary big deal and it’s something that normal people just like me can do in a section of their lives and it can bring a huge amount of benefit to the people that receive the kidney and all their friends family and loved ones. So you don’t need to be a superhero, you don’t need to be a mega star of any sort – this is potentially available to a large number of people and I recommend that people think whether or not it’s something that they can incorporate into their own lives.

Funraising Tours is organising the Transplant Tour, a 500-mile cycle ride from Edinburgh to Oxford, to raise funds for Give a Kidney. The Tour will commence on 17 September and take six days. En route, it will call in at transplant centres in Edinburgh, Newcastle, Leeds, Sheffield, Manchester, Birmingham and Oxford.

Graphic of bike on hill with Transplant Tour 2023 in words

For more information or to sign up to the Tour, visit Funraising Tours.

In this webinar we will be going right back to the basics of living kidney donation. Our panel, made up of Give a Kidney Trustees, will be answering all those questions you wanted to ask but were afraid to! This is a fantastic opportunity for anyone with any interest in living kidney donation – whether you are just thinking about whether to donate or maybe you might need a transplant in the future and are considering living donation.

Our wonderful team of experts will start off by asking and answering a series of pre-arranged questions aimed at those with little to no knowledge of living kidney donation. The panel will then 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, during and even after the process. We hope this event will be an opportunity to ask them in an informal and friendly setting. You can choose to remain anonymous should you wish to, and there’s no pressure to ask, if you just want to come along to hear the answers to other people’s questions. The session will be recorded as it will be used as an educational resource in future.

Sign up here.