UK Kidneyblog

A physiotherapy experience

noreply@blogger.com (Mark Jackson) — Mon, 26 Oct 2015 17:18:00 +0000

Just got back from an enlightening experience - a proper physiotherapy gym!

It was spotless and had countless large and small machines and huge inflatable balls and tiny dumbells Fantastic place.

But here's the rub - I'm not supposed to be there, its only for amputees only!

I did my exercise, slowly walking up and down the polished wooden floor between a pair of 3 meter floor standing parallel (20 times, very tough).

The physio suggested my GP could refer me to a local mobility group or an NHS Physio service which I have just requested.

Blood thinner misunderstanding

noreply@blogger.com (Mark Jackson) — Mon, 19 Oct 2015 09:09:00 +0000

On return from a 4 hour haemodialysis session on Saturday, the duty nurse announced she was going to give me an injection of Tinzaparin blood thinner.

This is usually given during periods of immobility to inhibit thrombosis or blood clotting especially in the legs.

I raised objection to the drug (as 5000 units were administered during the haemodialysis session) and the nurse showed the drug chart had no mention of this exception.

I asked to her or myself to speak with the doctor who informed her this was indeed the case and no Tinzaparin need be given.

Medtronic MyCarelink Patient Monitor

noreply@blogger.com (Mark Jackson) — Mon, 19 Oct 2015 08:11:00 +0000

Three days ago I was fitted with Reveal tracker in my chest. The procedure itself under a local lignocaine pain killer took 10 mins and was straightforward.

The cardiologists were initially proposing to fit a pacemaker then changed their minds and decided to Three days ago (Friday) a small data gathering device was
was inserted in to my chest. The procedure was quick and fairly painless and helps the hospital monitor my heart using this small device which gathers data and sends it via the MyCarelink monitor to the hospital.

MyCareLink™ Patient Monitor

The MyCareLink™ Patient Monitor may reduce appointment time by allowing you to transmit data recorded by your Reveal LINQ ICM to your doctor from the comfort of home.

Always Connected

The MyCareLink Patient Monitor keeps you connected to your doctor with wireless, remote monitoring.
Abnormal heart rhythm data is automatically sent to your doctor over a secure Internet connection.*

Reassuringly Easy

Uses a cellular signal and a power outlet. Setup is simple and easy.
The clear, understandable animated display will show you exactly what to do.
Go wherever you want. Your MyCareLink Monitor will go with you.*

* The monitor must always be plugged in and in a location that receives an adequate cellular signal. For automatic transmission, you must be within 6.5ft (2m) of your monitor.(Medtronic website)

Irregular heartbeats can be related to unexplained fainting, heart palpitations, atrial fibrillation and unexplained stroke. Unfortunately, they can sometimes be difficult to detect. Continuous heart monitoring may help your doctor discover irregular heartbeats so you can get the treatment you need

Heart Conditions

Learn about symptoms, treatments and how heart monitoring may provide information so your doctor can diagnose these conditions:

 Unexplained Fainting

Find out why you faint and how the cause can be detected and treated.

 Heart Palpitations

Learn about palpitations, how they can be monitored and available treatments.

 Atrial Fibrillation

Read about why it’s important to detect and treat atrial fibrillation.

 Unexplained Stroke

Find out how an unexplained stroke could be related to atrial fibrillation.

Long-Term Heart Monitoring

The Reveal LINQ Insertable Cardiac Monitoring (ICM) System provides continuous, long-term heart monitoring for up to 3 years.

Learn about Reveal LINQ ICM 

Important Safety Informati on

Broken Pelvis

noreply@blogger.com (Mark Jackson) — Thu, 15 Oct 2015 12:52:00 +0000

Three weeks ago I was admitted to hospital after I sustained a fall while getting up to answer the door at home.

I blacked out,fainted and found myself in a heap on the floor 20 mins later with my head buried in the carpet by the front door.

I immediately called for an ambulance informing them I was unable to stand or walk.

I was admitted to A&E at 5pm and after a long wait in the early morning I was put in a noisy ward on the l11th floor but I still could not feel or move my legs.

Specialist doctors for my kidneys and cardiologists ventured theories why I had collapsed and x-rays and ECG'S could not throw any more light on the matter. I still could not move and the pain became unbearable.

I was subsequently transferred to a Renal (Kidney) ward and after a very painful MRI scanning session a consultant informed that I had several fractures of the pelvis and the treatment may be very long. I would also have to consider a change to my present independent way of living. I;d hav eto consider living with a carer, sheltered (warden) living or some sort of suppported living.

It was a shock to the system.

It was now a week of being in hospital.

Union leader Mark Serwotka: I'm being kept alive by an electronic device – video

noreply@blogger.com (Mark Jackson) — Wed, 12 Nov 2014 01:34:00 +0000

http://www.theguardian.com/society/video/2014/sep/05/union-leader-mark-serwotka-kept-alive-electronic-device-video

The leader of one of Britain's biggest trade unions reveals exclusively to the Guardian that he is being kept alive by an electronic device strapped to a belt around his waist. Mark Serwotka has suffered heart and kidney failures and is awaiting a heart transplant. While he waits for the surgery, the PCS boss, who leads around a quarter of a million civil servant and central government workers, has been fitted with a device that works instead of his heart (The Guardian.com Sept 4, 2104)

Organ donation opt-out system given go-ahead in Wales

noreply@blogger.com (Mark Jackson) — Tue, 02 Jul 2013 22:11:00 +0000

The Welsh assembly debated a series of amendments to the Bill

A change in the law to bring in an opt-out organ donation system has been overwhelmingly voted through by Welsh assembly members.

Wales will become the first UK country to adopt a process where individuals will be presumed to have consented for their organs to be donated unless they opt out.

Ministers want to increase the number of donors for transplant.

The new presumed consent system could come into force by 2015.

More from the BBC website here

Interview with Raph Minus 1 kidney donor

noreply@blogger.com (Mark Jackson) — Wed, 01 Aug 2012 13:54:00 +0000

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

noreply@blogger.com (Mark Jackson) — Sat, 09 Jun 2012 16:39:00 +0000

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

noreply@blogger.com (Mark Jackson) — Sat, 09 Jun 2012 14:29:00 +0000

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

noreply@blogger.com (Mark Jackson) — Fri, 13 Apr 2012 09:45:00 +0000

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

noreply@blogger.com (Mark Jackson) — Wed, 11 Apr 2012 15:43:00 +0000

I'm A Survivor - Diary of My Kidney Transplant

noreply@blogger.com (Mark Jackson) — Thu, 05 Apr 2012 06:12:00 +0000

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.

Please sign up to follow this blog and tell your friends about it.

I just received a kidney

noreply@blogger.com (Mark Jackson) — Thu, 29 Mar 2012 22:33:00 +0000

l'll let you know all the details shortly.

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

noreply@blogger.com (Mark Jackson) — Sat, 10 Mar 2012 03:45:00 +0000

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

noreply@blogger.com (Mark Jackson) — Thu, 16 Feb 2012 15:12:00 +0000

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

noreply@blogger.com (Mark Jackson) — Mon, 13 Feb 2012 10:51:00 +0000

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

Give a Kidney- One's enough New charity

noreply@blogger.com (Mark Jackson) — Wed, 02 Nov 2011 06:53:00 +0000

Almost three million British adults would consider donating one of their kidneys to a complete stranger, according to a new charity promoting altruistic organ transplants.

The charity Give A Kidney - One's Enough launches today and it commissioned a YouGov survey to discover attitudes towards living organ donations.

It found 33% of British adults did not realise that they were allowed to donate a kidney to a stranger and almost one-quarter believed they could only donate to someone they knew or were related to.

More info: Sky News

http://www.giveakidney.org/

Printing a Kidney. The future for transplants?

noreply@blogger.com (Mark Jackson) — Mon, 29 Aug 2011 12:41:00 +0000

Check this out - i'll astonish you

Surgeons carry out first synthetic windpipe transplant

noreply@blogger.com (Mark Jackson) — Fri, 08 Jul 2011 02:22:00 +0000

Surgeons in Sweden have carried out the world's first synthetic organ transplant.

Scientists in London created an artificial windpipe which was then coated in stem cells from the patient.

Crucially, the technique does not need a donor, and there is no risk of the organ being rejected. The surgeons stress a windpipe can also be made within days.

Click title for full report

National Kidney Registry in the news

noreply@blogger.com (Mark Jackson) — Tue, 28 Jun 2011 07:41:00 +0000

This was a great piece in the New York Times Magazine (link below) but it framed the decision to donate to a child or start a chain as an "either or" decision. This is not the case. In fact, over the past 12 months, NKR chains started by Good Samaritan donors have helped a dozen kids get transplanted. The most recent child transplanted was a very hard to match 3 year old in Utah, which coincidentally, is the home of the author of the Times story.

The NKR Children & High PRA program (CHIP) is how chains are ended and will almost always provide a better match (HLA, age, size) to a child who ends a chain. A chain also has the potential to facilitate transplants for several children depending on the length of the chain and the composition of the pool. As it relates to the Times story, it would have been possible for Bala to start a chain, get 5 - 10 people transplanted AND get the 16 year old child transplanted with a better matched donor.

No matter how you look at this, Bala and all donors are heroes and should receive a standing ovation.

http://www.nytimes.com/2011/06/26/magazine/the-ethicist-life-preserver.html?_r=2

A few months ago, I signed up to be a living kidney donor to help someone in need who was not related to me. Recently I was told that I was a match for a local 16-year-old. But if I were to enroll in the national kidney registry, my donation could facilitate a donor chain, potentially benefiting 5 or 10 patients. Should I help one person now or several people in the future? It’s hard to say no to a child, yet does the good of the many outweigh the good of the one in this case? BALA AMBATI, SALT LAKE CITY

David Serur, MD

Medical Director, Kidney Transplantation

Rogosin Institute

New York Presbyterian Weill Cornell

505 East 70 Street

New York, NY 10021

Kidney Care Matters Online

noreply@blogger.com (Mark Jackson) — Mon, 04 Apr 2011 02:03:00 +0000

Kidney Care Matters

Online

Welcome to the April issue of Kidney Care Matters. It's full of the latest news in kidney care, including details of a number of new resources launched by NHS Kidney Care, consisting of a key facts report for diabetes with kidney disease, a mini topic review on care planning, a literature review on peer support, and new kidney disease Health Investment and Education Packs (HIEPs).

There is also an invitation to register for an e-seminar in May hosted jointly by NHS Kidney Care and NICE, which will look at the new CKD quality standard, and what this means for clinical practice. The invite comes after this week’s launch of new NICE commissioning guidance on the early identification and management of CKD – click through for more details.

You can read about the results from the National Vascular Audit, which shows that nearly two in three kidney patients start haemodialysis using a venous catheter. We look at the role of the new best practice tariffs, and how they could help incentivize better vascular access. There is also a report on the new kidney unit at Birmingham Children’s Hospital, which was made possible with a £1million grant from the British Kidney Patients Association, and news of another kidney care case study that has been listed on the QIPP specialist collection – the third one to be featured this year.

In a new feature of ‘people focus’ articles on the renal network managers, we talk to Rebecca Campbell, manager of the Yorkshire and the Humber kidney care network, about the key priorities for her area and the network’s achievements so far.

As always, you will find details of the most up-to-date publications, and links to useful websites and the latest issues of other kidney-focused newsletters.

With best wishes

Beverley Matthews

Director - NHS Kidney Care

April 2011

http://www.kidneycarematters.nhs.uk/

KIDNEY CHAIN - WHY NOT IN THE UK??

noreply@blogger.com (Mark Jackson) — Thu, 31 Mar 2011 18:47:00 +0000

TAMPA, For Gail McCauley, replacing her damaged kidneys might have been fairly straightforward. Her son wanted to give her one of his kidneys. They imagined checking in to the hospital together for the surgery. But as often happens, his tissues were a poor match for her. Yet TJ McCauley still gave up a kidney for his mother. The gift just ended up becoming a cross-country affair spanning three months, nine states, 16 donors and 16 recipients… For the entire story, click on the link below.

http://www.tampabay.com/news/health/donating-a-kidney-to-mom-part-of-a-cross-country-chain-of-events/1153933

Garet Hil
Founder & President
National Kidney Registry

World Kidney Day on Thursday March 11th Media Extra

noreply@blogger.com (Mark Jackson) — Tue, 08 Mar 2011 23:24:00 +0000

Uk official organ transplanttion site with information and publicity material

http://www.organdonation.nhs.uk/ukt

List of famous organ recepients from Wikipedia

http://en.wikipedia.org/wiki/List_of_organ_transplant_donors_and_recipients

Fox news story on Natalie Cole's organ transplant
http://www.foxnews.com/entertainment/2009/05/22/natalie-cole-loses-sister-hours-kidney-transplant/edia

MARK JACKSON YOUR BLOGGER IN THE PRESS!!

noreply@blogger.com (Mark Jackson) — Tue, 30 Nov 2010 04:40:00 +0000

Lawrence Keogh with Mark Jackson on dialysis

Nadia Sam-Daliri

East London Advertiser
Saturday, 20 November, 2010
7:00 AM

TELLY chef Lawrence Keogh met with patients suffering from kidney disease to hand out his inventive new recipe book.

The Saturday Kitchen cook - who had a kidney transplant ten years ago – has designed special dishes for those on dialysis whose diets are massively restricted as a result of the disease.

He spent a few hours chatting to patients at Whitechapel’s Royal London hospital today (Friday) to hand out his book and find out what other meals they would like included.

Mr Keogh decided to take action after experiencing first hand how difficult it can be to enjoy food while abiding by the strict diet dialysis requires.

He said: “I was on dialysis for two years and it was hard. I started just doing boiled rice and boiled chicken and it got very boring.

“People are now sharing tips for recipes - it’s brilliant. It’s about cheating with ingredients while still being able to enjoy your favourite dishes.”
Mark Jackson, 51, has been on dialysis for six years.
He was on holiday in Greece when his kidneys failed and has been coming to The Royal London for six hour sessions three times a week since then.

More from this article click here

Behind the Headlines:Warning over stem cell therapy

noreply@blogger.com (Mark Jackson) — Mon, 30 Aug 2010 04:20:00 +0000

The experimental use of stem cells for kidney repair has been linked to complications in a patient with kidney disease, the BBC has reported. It said that stem cell injections were followed by tissue damage in the patient, who later died from an infection.

The story is based on a case report on a 46-year-old woman with end-stage kidney disease who underwent stem cell therapy in a private clinic in Thailand. The woman’s condition did not improve after stem cells were injected into the regions of both of her kidneys, and so three months later she began dialysis. She was later found to have abnormal growths of tissue in and around her kidneys that the authors of the case report suspect were caused by the therapy. The patient later underwent removal of her left kidney but gradually deteriorated and died.

More from NHS Choiceshttp://www.nhs.uk/news/2010/06june/pages/stem-cell-therapy-unkown-complications.aspx