Interview with Raph Minus 1 kidney donor

I call myself "Raph of www.Minus1Kidney.com", since my kidney donation, there have been about 5,000 living kidney transplants in the UK but it seems I'm the only one making a spectacle of myself and hence collecting all of these accolades. I'm always asked these 2 questions.


Why was I nominated to be an Olympic torchbearer?

I have supported charities like the African Caribbean Leukaemia Trust (ACLT), Anthony Nolan Trust and Kidney Research UK with the message "Get more from life by sharing the Gift of Life". I promote blood, platelet, bone marrow and organ donation.

More of the interview here Black History Walks Newsletter

Handy Dialysis Hints 1

Here are a few handy hints which dialysis patients may find helpful.


1. Apply for your Freedom pass for free travel on tube, bus, rail and tram from your local council.

2. Apply for a Taxicard for black taxi journeys of 3 miles for £1.50 or 5 miles for £3.00.

Visit www.londoncouncils.gov.uk/services/taxicard

3. Don't forget you can substitute potato portions for other Caribbean ethnic starches such as yam, cassava, sweet potatoes, plantain, green banana (Still double boil as per usual). Talk to your dietician for more information.

4. DANGER DANGER - Avoid Star fruit which contains a chemical ingredient which can be toxic to a dialysis patient.

5. ENJOY - Grapefruit. Transplant patients aren't allowed grapefruit

or grapfruit juices!

 Leave your handy suggestions in the comments box.

Manifesto to improve kidney donation for black and ethnic patients

A Manifesto to improve kidney donation and transplantation within Black and Minority Ethnic communities in the UK was launched at the House of Commons on 7 March 2012 by Robert Buckland MP, Chair of the All Party Parliamentary Kidney Group.

Kirit Modi, Vice-Chair of the National Kidney Federation warmly welcomed the publication of the Manifesto and said:

“The Manifesto clearly identifies the huge difficulties BME kidney patients face in this country and sets out actions we need to take to urgently tackle this complex issue and save lives. Over a quarter of the patients waiting for a kidney transplant are from BME background but only 3% of those signed up to the Organ Donor Register are from BME communities. The average waiting time for someone from an Asian or Black background is about 30% longer than that for a white patient.

Click below for the full press release.
National Kidney Federation press release

Diary of A Kidney Transplant - Week 2

Before you jump to any conclusions about me, my lifestyle, my habits, eating, my fitness, etc. You can't catch kidney disease through the air, or by touch, or eating or drinking something. Its one of those things that can happen to you out of the blue. Some patients inherit a form of it, most it just happens.

Me. I used to go gym ( I used to be a dancer, long ago). I eat only healthy food, I'm a vegetarian. I've never drank alcohol. I've never smoked. I've never took hard or soft drugs. Ever.

Talking to doctors, they say if  diabetes, high blood pressure or kidney disease is in your family you're more likely to get it. My family was a high blood pressure family, both parents.

To be honest I didn't even know where the kidney was in my own body, let alone what it did. I found out alright. It affects every system in your body in some way, and when they both go down (you can survive easily on one) you definitely know about it.

The kidney is situated towards the lower back,within the abdominal cavity and is responsible for filtering the blood, regulating blood pressure, produces hormones and more importantly via the bladder, excretes urine waste from the body.

Its made up of many nephron cells and the doctors in my case said the new kidney's cells had 'gone to sleep' and need to be woken up one by one.

They also prescribed a revolutionary new process called plasma exchange because there were worries about my body rejecting the new organ. This involved taking my blood, spinning around what seemed and felt like a washing machine for a few hours. This happened many times. Be patient they said.

A Letter to All Friends and Survivors and My Donor

I'm A Survivor - Diary of My Kidney Transplant

Just to put you in the picture: I was a DJ - nothing too special - on the holiday island of Crete, Greece for the summer and everything was going along fine. One day I had a cough. The next day I thought I had flu as my cough had worsened. The next day I couldn't walk up the stairs to my hotel room, so I hired a motor bike to get around. I was referred to a local free doctor (no free NHS in Greece)who took one look at me and without saying anything put me in an ambulance to the local hospital.

 He saved my life. I was drowning in my own waste fluid sitting in my lungs.

The Greeks took care of me and even demanded loads of money for their services but due to the intervention of the consul from the British Embassy a month or six weeks later I was back in Blighty in Guys Hospital London getting the best treatment the NHS (supposedly) could offer. Dialysis.

Fast forward nine years. I organise my local hospital's World Kidney Day on the Thursday, then put on my first ever fashion show on the Sunday, go home and awakened during the night by a doctor telling me he's got a kidney for me at my local hospital. Some week.

I was sceptical (they called me a year before and sent me home) but once I was there I went along with all the tests and x-rays and to be honest I don't remember much about the procedure itself. I woke up tethered to bleeping machines and said, "You've got a new kidney - and its working. Just about".

Hmm I thought. Is this just a false dawn?

Day 2-5 Play Up Pompei

That night I began having series of strange dreams. It was like being invited to look at someone's holiday snaps and home movies. Bright vivid images and even a trailer for a football match. A Portsmouth match with the 'Play up Pompei ' theme.

My kidney's original owner is a Pompei fan, maybe even from Portsmouth itself. The doctors laughed though one said he'd heard a similar story from a heart transplant patient.

The doctors had warned me the donor had died, was a 60year old man, white (I'm black) and wasn't very fit. But his kidney had begun divulging even more information than even the doctors knew.

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I just received a kidney

l'll let you know all the details shortly.

Get £75 for taking part in an interview about Chronic Kidney Disease!

The Patients Voice would like to invite people in the UK with Chronic Kidney Disease to take part in some research. The research is to help us develop a new product which will assist people with CKD.

The research will take around one hour and will be part by telephone and part online. We will reward you for your time and effort by giving you £75 to thank you for your time and effort.

To qualify for the study you will need to meet the following criteria:-

- Aged 18 plus

- Have being treated for CKD and anaemia

- Live in the UK

If you wish to participate please send us an email giving you name and email address to Belinda Shale at Belinda.shale@healthcarelandscape.com. Please put HL711 in the Subject Line for easy administration.

Even if you don’t qualify for this survey we would love it if you could join us at The Patients Voice so we can invite you to many more projects! To join please press the button below.

If you know of anyone who may wish to participate in the project please ask then to email Belinda at Belinda.shale@healthcarelandscape.com and she will send them an invitation to the project. If they do qualify and take part we will reward you with £15.

BBC Radio 4 debates Organ Donation

Moral Maze - BBC Iplayer audio - 43 mins

Every year around a thousand people die waiting for a donor organ. The scientific and medical problems of organ transplantation have long since been solved. The moral, ethical and psychological issues are proving much trickier. Now many patients and doctors are calling for radical changes to tackle the organ shortage to save lives. A new report by the BMA says patients could be kept alive solely to harvest their organs. The practice is called "elective ventilation" and would mean that when a patient was recognised to be near death doctors would start ventilating them, not to save their lives, but with the specific intention of facilitating organ donation. There's also a call to switch to a system of presumed consent where people would assumed to be a willing donor unless they actively opt out of the system - something the Welsh Assembly is already considering. Is it about time we redress and update our ethical boundaries and set aside our moral squeamishness to save lives? How many of those who instinctively recoil from these ideas would happy accept a donor organ for themselves or a loved one? Or is this a horrific vision of Brave New World utilitarianism were we reduce patients to a collection of potential spare parts - a means to an end, rather than an end in themselves? The debate goes to the heart of what it is to be human and what lengths we'll go to save a human life. It's a moral dilemma of Solomon like proportions. Whose body is it anyway? That's the Moral Maze.




Witnesses: George Pitcher Anglican Priest at St Brides' Fleet Street, author of "Time to Live -The Cases Against Euthanasia and Assisted Suicide", Janet Radcliff-Richard Professor of Practical Philosophy at the University of Oxford. Her book 'The Ethics of Transplants: Why Careless Thought Costs Lives' is due out later this year, Joyce Robbins Patient Concern, Melanie Wager - Kidney Wales.



Combative, provocative and engaging debate chaired by Michael Buerk with Melanie Phillips, Michael Portillo, Claire Fox and Anne McElvoy.

Broadcast on


BBC Radio 4, 8:00PM Wed, 15 Feb 2012

Available until

12:00AM Thu, 1 Jan 2099

First broadcast

BBC Radio 4, 8:00PM Wed, 15 Feb 2012

Categories

Religion & Ethics Duration

43 minutes

Patients kept alive solely to harvest organs

It is one of a raft of measures contained in controversial proposals from the British Medical Association intended to stop up to 1,000 people a year dying because of the country’s chronic shortage of organs.


A new BMA report also suggests hearts could be taken from newborn babies for the first time and body parts could be used from high -risk donors.

The BMA wants a debate about the use of an ethically contentious practice called “elective ventilation”, in which patients diagnosed as dead – such as those who have suff ered a massive stroke – are kept alive purely to enable organ retrieval.

Full story The Telegraph