Kidney Research UK

Kidney Disease can affect anyone of any age, including children. Some people are born with the condition, whilst others only discover years down the line (often completely out of the blue) that their kidneys have failed. But whatever the circumstances, there are only two options: dialysis, whereby a machine replaces the function of the kidneys, or a kidney transplant for which there is a huge shortage. Here are a selection of stories from people who have lived first hand with the disease.

Alice Skinner

Alice was born in 2001 with Dyspastic Kidneys – which were severely affected – in fact the ‘kidneys’ were just stumps of tissue. The ‘stumps’ gave Alice a tiny amount of kidney function – enough to keep her going for her first six months. Then her kidneys failed and Alice had to go straight on to dialysis. A form of Automated Peritoneal Dialysis (APD) was the choice – Alice needed to dialyse for ten hours each night, six nights out of seven. The difficulties for a family with a young baby on dialysis must have been considerable.

Once Alice had gained enough weight, she was placed on the UK Transplant register. Sadly, her father George could not donate a kidney either, as he was not a match. By August 2007, Alice was six years old and in year two. She attended school for two days each week – the other three days she travelled with George to clinic for her haemodialysis. By this time Alice had undergone 16 operations. A transplant was scheduled for November 2007, but did not go ahead.

In April 2008, a kidney was found for Alice and the transplant went ahead. For the first time in seven years, she is free of dialysis and attending school full time. Alice especially enjoys her school dinners – being able to eat and drink like all the other children. As for her father – he is so relieved!

Benjamin Caligari

Benjamin arrived into the world with the usual happy celebration, but at just thirteen days old he developed septicaemia . There were three more bouts of septicaemia before Benjamin’s first birthday. Reflux (the most severe grade) was diagnosed when Benjamin was three months old. Scans showed he had hydronephrosis and pyelonephritis in his affected kidney.

Reflux occurs when the valve between the bladder and ureter does not close properly on passing urine. The urine flows up into the kidney instead of out of the body. This causes damage, scarring and infection over time. If severe enough, kidney function can be badly impaired.

Benjamin was referred to Great Ormond StreetHospital, where he had four operations. While in their care, he took part in trials for the ‘Sting’ procedure in babies, which is routinely used in America.

During surgery, it was discovered that Benjamin had no valve in his ureter - this would have caused his reflux. A new valve was implanted.

Benjamin and his mother Kerry spoke to delegates at the December 2006 VUR conference about Benjamin’s journey and what could be done to help parents in a similar situation. Kerry said later: ‘It has been a great source of comfort and security knowing where to get information for ourselves and other people. Being involved with Kidney Research has helped us to network with other people, find out more about the illness, and empower us to find out more.’

Benjamin is now growing into a lively, happy, chatty boy. He has medical checks every four to six months and takes long term antibiotics as another urinary tract infection is always possible. This is hard to deal with but support from Kidney Research UK makes this easier to bear. Unsurprisingly, he is not so keen on medical appointments these days.

Benjamin loves going to pre-school, loves music, dance and making people laugh. He is also very fond of Thomas the Tank Engine and older girls!

Katie German

Katie was diagnosed before birth in April 2005, with a Multicystic Dyspastic Kidney which left her with some renal impairment. You can only imagine the concern this must have caused Katie’s’ family, once this condition was discovered in their awaited baby. Katie needed medication for a while after she was born, and has since had many checks and investigations to check the severity of her condition.

She has ultrasound scans to check the health status of her kidneys every six months and sees a paediatrician once each year. The last scan showed approximately 20 cysts on Katie’s left kidney. The largest of these cysts is one centimetre across and it still appears to be growing. Katie’s’ healthy right kidney is bigger than it should be for a child her age as it is having to work twice as hard to compensate for the cystic kidney. At the moment, Katie is not on any medication, although the cystic kidney may need to be removed at some time in the future. Katie’s mum worries about the possibility of urine infections: so Katie goes to her doctor or A&E immediately if there are symptoms. This helps avoid problems or harm to Katie’s healthy right kidney, so reducing the possibility that dialysis or a transplant will be needed in the future.

Katie’s family are enthusiastic fundraisers for Kidney Research UK. Katie’s mum Sarah ran the 2006 London Marathon for us and Katie’s Dad Ben in (March this year) completed the Adidas Half Marathon at Silverstone. In January 2007 Katie’s grandmother held a ‘Las Vegas’ themed 60th birthday party, again to raise funds for our cause. Sarah has also given interviews to BBC Radio Northampton about her fundraising for Kidney Research UK as well as to Asda magazine for a Mothers’ Day feature.

At the time of writing Katie is almost three years old and is growing into a gorgeous and determined little girl. Katie looks so healthy that you would never know that anything was wrong with her, or that her current and future kidney health continues to give so many concerns.

Caroline Baker

Caroline was born in 1965 – for the first two years she suffered from cystitis and her doctors treated her with antibiotics accordingly. Diagnosing the real problem was difficult as scans were not available then as they are today. A change of doctors prompted further investigations - Caroline’s ureters were found to be too long – and this had caused the reflux and subsequent scarring to her kidneys.

When Caroline was 10, she had an operation to shorten her ureters and re-implant them into her bladder. Many years of medication followed as Caroline’s kidneys were failing. In 1986 she needed more medication to control high blood pressure then, towards the end of the 90's, Caroline needed conservative management for diet and lifestyle.

This was enough to keep Caroline off dialysis. Caroline was told that she would never have children, but she has a teenage son, Alex. Alex was born with a dilated ureter, which was treated. The condition resolved itself and Alex is now a happy, healthy teenager.

By March 2006, her kidney function had dropped to 13%, so Caroline was placed on the transplant register.

Three people were tissue typed, her younger brother (then 30) proved to be a match and Caroline received his kidney on 4th October 2006.

Caroline said at the time:

“My surgeon at the Royal Free Hospital knew I was interested in all the details of the transplant process so showed me my brother’s kidney before it was transplanted into me! The vision of a pink, plump, healthy kidney is one which will be with me for ever. I have the greatest respect for my new organ which my Transplant Team tell me is a ‘beautiful’ kidney, and because my brother is a strapping 6’4”, said it was like putting a ‘3 litre engine in a mini’!!

A few weeks later Caroline wrote an article about her transplant experience which was used at the Royal Free Hospital for prospective transplant patients and also in the Royal Free Kidney Patients magazine. Please follow the link to view My Journey to Transplant and Beyond!

Both Caroline and her brother continue to do well. In December 2006 she contributed a case study to the VUR Conference and now has contributed her case study to Kidney Heath Information, so we can continue to raise awareness of Kidney Disease.

Julie

Julie inherited Polycystic Kidney Disease from her father. In 1992 her became a cause for concern, soon followed by symptoms of kidney failure, being extreme tiredness, weakness, nausea and night time cramps. Continuous Ambulatory Peritoneal Dialysis (CAPD) had to be carried out at home by Julie, due to loss of kidney function. Also a restricted diet avoiding certain foods and drinks had to be followed.

In 1995 Julie was one of the lucky ones as she had a Kidney Transplant at Addenbrooke’s Hospital, received from an unknown donor. Her health has been very good since and she feels strong.

Julie would like to say this:-

“Suffering with Kidney Disease is extremely difficult to cope with for the patient and the patient’s family. When I was on Dialysis I just was worrying, waiting and hoping for a suitable organ to become available for me. It was a stressful time.

After my Transplant I felt so well immediately and very grateful to the family who had lost a loved one and consented for the Kidney to be given for Transplantation. I travelled to Australia and various countries in Europe on Holiday and am able to enjoy good health and being free of Dialysis. I take anti-rejection tablets daily and have six monthly check-ups but that’s all. I now really appreciate feeling well”.

Jessica Gleeson

When Jessica was three, her parents noticed she was losing weight, had dark circles around her eyes, no appetite and was generally unwell.

Jessica developed a flu-like infection when she was four years old. At the same time her urine turned brown, like coca cola in appearance. The urine was tested by Jessica’s GP who said it contained blood and protein - probably due to a urine infection .

Jessica’s condition did not improve, so she was referred to a paediatrician at Hull Royal Infirmary. The paediatrician admitted Jessica to the children’s ward and a series of blood tests and scans followed. These tests confirmed an acute nephritis (inflammation of the kidneys). After leaving hospital, Jessica was seen regularly at clinic and her blood test results indicated a longer term problem with her kidneys.

Jessica was invited for a kidney biopsy at St James Hospital in Leeds. The biopsy confirmed that Jessica at just five years old had a condition known as Type 2 Mesangio Capillary Glomerular Nephritis or MCGN2 for short. This condition is also known as Dense Deposit Disease.

At the time Jessica’s parents were told that there was very little treatment or research into MCGN2 and worse, that the outlook was not good. The treatment options were minimal because the condition is so rare. The doctors offered Jessica steroids, but her parents refused as they were concerned about the side effects.

Jessica said: ‘After being diagnosed, I went to school as normal, but had spells of fatigue, whereby I could not attend school for several weeks. It was at one point considered that I would only attend school part time, but I did not want this to happen. My attendance at school was often under ninety percent, which meant that I missed out on a lot of education. Whilst younger, I often felt different to other people, but due to ongoing support from friends and family I have now come to terms with my illness and am happy to talk about it. I also have felt/feel that as there is very little research into my condition. I can not really be given any information or answers to questions which I have and this frustrated me as there is so much uncertainty surrounding what may happen to me.’

Jessica is now 16 and has had few problems and leads a relatively normal life, although she does suffer from fatigue. Jessica stills attends clinic where her kidney health is monitored regularly.

Jessica would very much like to be in touch with others who suffer from the same condition. So far she hasn’t come across anyone, but this may change soon!

Riminder Dosanjh

I was diagnosed with Renal Failure at the age of 18 months, and have had two cadaveric Kidney Transplants, the first being in 1982 which gave me 14 years Dialysis Free, unfortunately transplants do not last forever, I went back onto Dialysis in 1996 and received my second transplant in December 2000 which lasted just over four years. I have now been back on Dialysis just over four years.

I had never prepared myself for either of my transplants’ letting me down. I had been given a gift but it had been snatched away. It made me realise that transplantation was not a solution for kidney disease but, quite often, an interim measure.

This has made me even more determined to get on with my life - to carry on working and make people accept me for who I am and not being known as the one who is ill. I would love more Asian people to sign up to be organ donors to save people like me.

Asian people are four times more likely to suffer from kidney failure, and more and more Asian people are now requiring dialysis , so it's important that we work to raise awareness amongst Ethnic communities of the disease.

Employed full time since 2005, Riminder works for her local Primary Care Trust - she is lucky to have an understanding employer who understands her dialysis needs.

Riminder passed a major milestone a while ago – she has been living with renal replacement therapy for more than 25 years and knows how much her positive attitude brings her satisfaction and achievement in her everyday life.

Meanwhile, Riminder is looking forward to her third transplant.

Riminder has also been involved with the ABLE project – please follow the link to the ABLE home page: http://kidneyresearchuk.org/content/view/21/40/ ABLE – A Better Life through Education and Empowerment.

Pete Kumar

Pete Kumar, 34, was diagnosed with kidney failure 13 years ago. Although he received a transplant at 22, it failed quickly and he has been waiting for a suitable organ to be donated ever since. In the meantime Pete undergoes dialysis for four hours a day, three times a week. “I had no idea how my life was going to change when I was diagnosed. At 21, I literally had my whole life ahead of me, and in the space of a few days my world was turned upside-down. From planning my career, marriage and kids, my priorities changed to simply surviving. It has been very hard - there’s no getting away from the fact that my life now revolves around my dialysis, and the inevitable wait. Whatever I do, even when it comes down to my family and my children, I have to put dialysis first. If I don’t, I’m playing with my life. The fact is, unless I get a donor, my life is limited. But we live in hope!”

Pete now had home haemodialysis . In between dialysis sessions, he also works from home.

As if that wasn’t enough, Pete has featured in our 2005 Annual Review. He also features in our Module Two DVD: Living with Kidney Disease – End Stage Renal Failure. To view clips, please follow the link… http://kidneyresearchuk.org/content/view/265/323 . alternatively you can view the information – from the home page at http://www.kidneyresearchuk.org/ see under ‘News’.

Pete has also been involved with the ABLE project – follow the link to the ABLE home page: http://kidneyresearchuk.org/content/view/21/40/ ABLE – A Better Life through Education and Empowerment.