Directed donation

Naqeeb Quereshi on donating a kidney to his mother

Article For GMKIN In the name of Allah, the most Beneficent, the most Merciful. Waoo, it has been Four Years Now (13 September 2013-2017) since my mum has her transplant done at Manchester Royal Infirmary (MRI). We arrived in this country in July 2012 as a family to live and progress our life and careers[…]

DNA Editing

DNA Editing: Future therapy for genetic conditions?

DNA Editing: Future therapy for genetic conditions? It can’t have escaped your notice that in the past few days the latest development in DNA editing has featured heavily in the media as news emerged of scientists from the USA and South Korea successfully removing a piece of faulty DNA from an embryo. Not untypically, the[…]

World Transplant Games

Paul Reynolds at this year’s World Transplant Games

Paul Reynolds at this year’s World Transplant Games Paul, one of our Salford Royal Kidney Ambassadors, reflects on his time at the World Transplant Games in Malaga.   We’re just back from an incredible two weeks – 1st week showing the world the power of organ donation by playing for Team GB at this year’s[…]

Transplant Games

Transplant Games – Q&A with Jenny

Transplant Games – Q&A with Jenny Jenny, wife of Paul, one of our Salford Royal Kidney Ambassadors, talks about her experience of supporting Paul in the Transplant Games. Read her perspective on the Transplant Games and why she thinks it is a great thing to get involved in! Tell me about yourself. My name is[…]

Transplant Games

Transplant Games Q and A with Paul Reynolds

Transplant Games – Q&A with Paul Paul, one of our Salford Royal Kidney Ambassadors, talks about his experience of participating in the British and World Transplant Games. Read about his achievements, how the Transplant Games have helped him, and why he thinks more people should get involved! Tell me about yourself. My name is Paul[…]

Kidney Peer Support – Patient Story

Kidney Peer Support – Patient Story Joan, a peritoneal dialysis patient at Salford Royal, writes about her experience of providing peer support and why she thinks it is a great idea. I was a happily married woman with three grown up step daughters whose life was dramatically changed one day in 2006 when, as I[…]

DNA Editing

100,000 Genomes Project

100,000 Genomes Project With thanks to Jackie Evans, Mel Kershaw and Emma Wolfenden, a few words on signing up for the 100,000 Genomes project… I’ve taken part in several research studies over the years, the first being a comparative study of Ciclosporin and Sirolimus to which I enrolled on the day of my kidney transplant[…]

Immunosuppression prescription: Progress!

“The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.” — George Bernard Shaw I’ve never considered myself an unreasonable man.  In fact at times I feel cursed that I invariably see both sides of an argument[…]

Better the Devil you know?

I suppose it’s human nature when diagnosed with a serious chronic illness to compare one’s self to others. Often I see posts in various renal support groups of patients stating that they feel family, friends, and work colleagues would be more understanding of their illness if they had cancer. Some even state ‘they wish they[…]

Introduction to The Seed

Cristina, the initiator of #GMKIN, asked me to write a poem about relationships developed on #GMKIN to share at #UKKW2016. When I was first diagnosed with #ESRD eight years ago there were no local kidney information support groups that I was informed about or aware of. #GMKIN helps fill that gap. I hope people enjoy[…]

John and the big silver box

John and the Big Silver Box   Having been told by my consultant some years ago that my future (with a capital F) lay in dialysis, I was dragged down a long dark corridor, kicking and screaming, by a nurse and shown two machines, one large, imposing and scary, the other somewhat smaller and looking[…]

To glove, or not to glove, that is the question

Recently I’ve noticed in some other renal support groups that home haemodialysis (HHD) patients state they are wearing gloves. The home environment is different from a clinical setting and I began to question why these patients were wearing gloves. Firstly let us look at the reasons clinicians wear gloves: Rationale for using medical gloves: Medical[…]

‘Imagine what I could have done healthy’

In an interview with The Daily Telegraph just before the recent Rugby World Cup Jonah Lomu, who sadly died at the age of 40 last night, said “Imagine what I could have done healthy”.  That’s a scary thought given what he did achieve in the game but we should read more than that into those[…]

Patients can change the future of research

October 15th, 2003 is a date I celebrate with my family every year, it isn’t my birthday but to me it felt like a rebirth.  It was the day I received my kidney transplant.  It was also the day I enlisted in my first research study.  The details of the research escape me although I[…]

Tolvaptan: A Game Changer?

It’s almost two years since I wrote a blog called Parental Dilemma in which I posed the question in relation to a genetic disorder “would you test your child or would ignorance be bliss?” The genetic disorder in question was Autosomal Dominant Polycystic Kidney Disease (ADPKD) and it caused the complete failure of my kidneys[…]

Team Manchester at the Transplant Games, 2015

Zoe Dixon, manager of Team Manchester has kindly written a report of the team’s experience and performance at the recent Westfield Health British Transplant Games in Newcastle & Gateshead.  With many thanks to Zoe and Arthur Taylor for sharing the report. BRITISH TRANSPLANT GAMES NEWCASTLE & GATESHEAD 30 July – 2 August 2015 The Manchester[…]

Being in pain is a bit of a pain

There were so many great talks and presentations at the British Renal Society’s Conference in Leeds last week that it’s taken several days of reflection for them all to sink in. My mind however keeps returning to a talk from a junior doctor from Imperial College Renal and Transplant Centre, Louis Koizia. His excellent and[…]

Special trips for kidney patients aged 16 -40

Dear All I got an email recently from a charity that supports 16-40 year olds with serious health conditions. They have supported local kidney patients and their loved ones with ‘special days’ over the last few years. If you or someone you know is the right age group and has kidney problems – you are[…]

Abba, Dementia and Empathy

Cristina and I have given a few presentations about GMKIN in the past few months but they felt like rehearsals for the main event, the British Renal Society Annual Conference which this year was held at Leeds University. Our journey to Leeds didn’t bode well for the rest of the conference: motorway traffic jams, a[…]

Half full or half empty?

  My daughter asked me an interesting question the other day. “Is your glass half full or half empty mum?”. I thought about this and started reflecting on my life. Do I think that I’ve been dealt some unlucky cards? Well yes if I consider that not long after I separated from my daughter’s father[…]

12 Months

12 Months… Today sees the 12 month anniversary of my dates with Dai #dialysis shocking where the times goes but also the longest 12 months ever! If I’m really honest..the hardest 12 months that only 2 people really understand..Lee and myself. Putting a few things down in print..maybe to share my experiences/thoughts with others going[…]

Shared Decision Making for kidney patients

With many thanks to Kate McNulty for allowing us to share this video.  Shared Decision Making (SDM) is a useful resource to identify your options when you’re approaching the point where you need to decide which type of dialysis is most suitable for you.  It will also help you talk in greater detail to your[…]

Be a part of it!

The British Transplant Games are taking place in Newcastle/Gateshead this year between July 30th and August 2nd.  If you come from Lancashire, South Cumbria, Manchester or North Cheshire and would like to take part please check out the details in the document below and contact Zoe Dixon who is the Manchester Adults Transplant Games Team[…]

Information sharing and where it goes wrong

I sometimes struggle for ideas for my blogs and often find that reading the blogs of others sparks an idea in my head.  This blog is based on comments I made to Anne Cooper (@anniecoops) about her recent musings on Information Governance and her assertion that the processes involved in capturing personal data aren’t always[…]

CKD Lab Results Research

  Stuart Powell and I attended an initial meeting with Lamiece Hassan and Paolo Fraccaro at the Health eReseach Centre (HeRC) in Manchester on Friday morning to discuss Paolo’s study into how best to present lab results to patients with Chronic Kidney Disease.  Following a brief introductory chat Paolo gave a short presentation on the[…]

What’s happening?

Hello hello, haven’t been here for a while.. Whats happening?..well dialysis is still a struggle (nothing new there!) no two days are ever the same. If an ‘ok day’ could be had two days on the trot, I’d be laughing! Plummeting Bp and flaking out..yay go me! 🙁 Anyone else encounter that!? Wobbly legs after[…]

The Ticking Clock of Routine and Twitter Friends

The weekend didn’t get off to a good start so it shouldn’t have come as a surprise that by Sunday afternoon my mood was heading steadily downwards. We were supposed to be travelling to the north-east to visit my step mother-in-law in her care home but the snow that greeted us on Saturday morning put[…]

Arthur Taylor’s Blog on the Westfield Health British Transplant Games, 2014

This is our first feature as we start to build up to the 2015 British Transplant Games in Newcastle.  Arthur Taylor’s blog on taking part in the very successful 2014 games held in Bolton. “We went on Thursday 7th August to Bolton for flat green bowling and it was a brilliant experience, unfortunately there were[…]

Pause For Thought

I’ve always been one for reflecting on events in my life, thankfully these days I manage to avoid the negative, confidence sapping reflection that fuelled my period of deep depression. Nowadays I look for the postive things in my life and celebrate even the minor achievements no matter how insignificant. Until last week I counted[…]

My 5 day countdown to my #Kidney #Transplant

Hi Everyone, My name is Joseph, and I am a CKD patient who is having a kidney Transplant on Friday 01st August 2014. I am very fortunate that my older Brother is giving me the gift of life. In 2010 I became ill and quickly the doctors diagnosed CKD. For the next 4 years I[…]

Guest blog from John Roberts on organ donation

John Roberts urges people to spell out their organ donation decision.   New figures out this week show that just 45% of families agree to organ donation going ahead if they are unaware of their loved one’s decision to be a donor but this figure rises to 95% when they know the decision. To mark[…]

An update on my adventures :-)

Hi! Well, I’ve been back in the UK from my new smallholding in Spain for a couple of weeks and getting ready to go back in a few weeks again! 🙂 Have updated my website with some pics of my progress over there…. check it out…. www.asturias-smallholding.co.uk In the meantime, I have signed up to[…]

ALL THE KING’S HORSES AND ALL THE KING’S MEN…..

So I started dialysis last week Tuesday… What a nerve racking period it was, pre-dialysis. I couldn’t sleep, I couldn’t stop thinking about what could go wrong..infections, the tube not working, pulling it out of my body by mistake etc; above all the fact that this is my life now. I would no longer be[…]

Raise Funds for HKPA by Steven Chadderton

Steven Chadderton I am Steven Chadderton – Father of my Eldest Daughter, Helen Louise Chadderton who has entered the Great Manchester Cycle Race of 52 Miles (Sunday, 29th June 2014) and also the Manchester to Blackpool Cycle Race (Sunday, 13th July 2014) along with her Partner – Shaun Parkinson, to raise Funds for the Hope Kidney Patients Association – Salford. I have been a Renal[…]

Newbie to gmkin..Hello :-)

Hello all, complete newbie to gmkin and this blogging malarkey, be kind… Not really sure how to start this, so here goes… When you’re asked ‘how are you?’ or ‘all ok with you?’.. It’s easier to answer ‘alls ok’ or ‘not too bad’ Not say how rubbish you feel things really are. Why would anyone[…]

The Impenetrable Language of Research Documents

Many years ago as I was taking my first steps into Information Technology management I was invited by the board of directors to present a proposal detailing my recommendations on resolving the performance issues of the company’s computer system. The day duly arrived, I was summoned to join them in the boardroom and nevously began[…]

GMKIN Registration and Blogging process

I recently created a document (see link below) which gives a step by step overview of registering on the GMKIN website and also how to create your own blogs.  If you’re already registered on the GMKIN website then simply login and proceed to the section of the attached document about creating you own blog.  […]

Healthcare and Technology: A Brave New World?

When technology giants Apple and Google begin acquiring companies that have developed healthcare applications or equipment you know that mobile healthcare is a growing business. It is predicted that the next version of Apple’s IOS mobile operating system will come with built-in apps focused on measuring and improving our health while Google has already demonstrated[…]

From doing nothing to being alive again

Well my life has changed since I started losing my last Transplant. Went so downhill, so fast. Weight just fell off me and was constantly tired. It comes to something when you ask to start Dialysis, but having been through it all before I knew what would happen if I left it till I really[…]

Blog No. 2 – The Race season!

Hi all, I haven’t had chance to blog recently, have been unwell – not kidney related!!! The usual winter coughs and colds but not clearing couldn’t seem to shake them, and then my asthma kicking off as well, only managed to get out mountain biking and hiking a couple of times for leisure rather than[…]

Four and a half years on and still feeling tired continued

Well dear friends, I have a serious confession to make which is an indictment to how Chronic Fatigue can affect someone. It affected my concentration so much that I made the simple mistake of thinking that I had only been transplanted three and a half years instead of four and a half years.  Please add[…]

Changes to Immunosuppression Medication Prescription

Some of you may have read a recent warning from the National Kidney Federation regarding changes to the method of prescribing immunosuppression drugs for transplant patients. Immunosuppression drugs will now be prescribed and dispensed from the patient’s renal centre. I had expected to hear more about this significant change but have heard nothing. Then again,[…]

Salford Royal Foundation Trust

Good morning people! Hope everyone has had a top start to the New Year. I signed up for a voluntary job at Salford Royal Foundation Trust yesterday. As far as I’m aware, I’ll be working in and around renal patients who have ‘crash landed’ with kidney failure and giving them a heads up on what[…]

My name is Luke Hooper and I’m 21 years young..

Afternoon people! I’ve only recently joined this website so here’s a bit about me… My name is Luke Hooper and I’m 21 years young. I got diagnosed with Kidney failure April 2012 and went on to Haemodialysis. After nearly a year of ups and downs I was lucky enough to receive a kidney courtesy of[…]

Depression in CKD sufferers

“There are three clinical psychologists attached to the Salford Royal Renal Department.” “People with depression often have worse physical health, as well as worse self-perceived health, than those without depression.” source “1 in 4 people (in Britain) will experience some kind of mental health problem in the course of a year.” source “In a study[…]

Sam Leight – New to blogging :-)

Hi, I am new to blogging but I think the idea is absolutely fantastic… Its good to hear stories of how other people are coping and the different difficulties individuals face and how they are overcoming them… It also seems to be a brilliant way to support each other when at first we think we[…]