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The radio programme I mentioned back in January is being broadcast tonight (repeated Sunday 5pm).

BBC R4 at 8pm Organ Beauty Pageant – UK patients who need a kidney use social media. Is it fair?

http://www.bbc.co.uk/programmes/b08nq6fh

Quoting from the page linked above

Is it fair to find your own kidney donor on the internet? UK patients who need new organs are using social media to advertise their plight and appeal directly for a Good Samaritan who’s willing to share their spare kidney with a stranger.

As Lesley Curwen discovers, the development of such appeals on social media has caused consternation among some in the transplant community. They fear a competition to attract donors amounts to an unsavoury beauty contest, in which only the most plugged-in and tech-savvy can participate.

But for Nicola Pietrzyk from Leicester, turning to social media and Facebook was a no-brainer. Her 11 year old son, Matthew had been spending 12 hours a day on dialysis, waiting for years for a possible donor from the NHS list. She’s convinced that if she hadn’t launched A Million Likes for a Kidney for Matthew, a kind-hearted stranger would never have offered her son a new kidney, potentially saving his life.

The campaign prompted several prospective donors who weren’t a match for Matthew to go on to donate to others and Alison Thornhill tells Lesley Curwen why she went on to do just that.

But the likelihood that individuals, motivated by a particular story on social media, will in fact be a match for their intended recipient is slim, and Lesley hears from transplant teams frustrated that NHS resources are sucked up by high profile campaigns that attract many volunteers, all of whom need to be tested, most of whom won’t turn out to be a possible match for the recipient.

Dr Adnan Sharif, consultant nephrologist at Birmingham’s Queen Elizabeth Hospital, was closely involved with several high profile media campaigns and he admits that he and his team were at times completely overwhelmed by the demands that multiple volunteers, each offering to donate a kidney to a named individual, placed on the unit.

While he acknowledges that such social media campaigns are legal and after the guidelines were changed, were accepted by the transplant community, he admits to mixed feelings about the outcome. He and his team are delighted for the individual who has a new kidney, but uncomfortable about diverting resources from patients who are waiting for an organ through the traditional routes, from deceased donors or through the NHS Living Donor Scheme where altruistic donors place their trust in the transplant authorities to pick the best match for the kidney they’ve donated.

So the transplant community in the UK has come to terms with social media campaigns for organs from strangers, even though there’s a clear preference for the NHS altruistic donor scheme. But Lesley discovers another internet innovation: websites that allow kidney patients to advertise for a prospective donor, have been frozen out as clinical teams have voted with their feet and refused to deal with them.

An American website, matchingdonors.com, launched in the UK in 2012 and sent policy makers and clinicians in the organ transplant field into multiple huddles.
The final ruling was that websites like this could operate as long as no fees were paid (matchingdonors.com didn’t charge UK kidney patients a fee but they do charge $595 to USA patients for a lifetime membership). Over 100 UK patients and over 300 UK donors were registered at the site.

But as Lesley finds out, in five years, not one transplant has happened through this website. Patients told her their transplant teams simply refused to deal with it, and the former chair of the ethics committee of the British Transplantation Society, Professor Vassilios Papalois, argues that clinicians have autonomy and if they’re not comfortable with the idea of a matching organ website, they’re under no obligation to proceed. He finds the idea of a matching website ethically objectionable, he tells Lesley, and he wouldn’t personally sanction it either.

For anyone unsure about Matching Donors company, here is a long post I did about them back in 2012

http://livingkidneydonation.co.uk/questions-for-matchingdonors-com.htm

 

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I have been contacted by Alex Brockman who is a researcher for a TV production company called “Twofour Broadcast”, on a returning series presented by Davina McCall called ‘This Time Next Year’, and they are looking for applicants to share their story. Although the request is for me to circulate amongst potential kidney donors/recipients in my organisation, really any inspiring story that is a life changing episode in someone’s life would be worth their consideration. There is a link towards the end with a clip of series 1 etc.

“The show is based on people making a pledge to the nation of something they would like to achieve by this time next year. We hope to follow people’s journeys throughout the year to see them making progress and hopefully fulfilling their goal and ambition. We would like to cover a whole range of subject matters, featuring inspirational people at the start of life-changing transformations, and in turn inspire others watching who may be in a similar situation to attempt to overcome obstacles and achieve their own goals.

As we were hoping to include some more pledges about people’s lives being transformed due to amazing treatment/surgeries. We are looking for people hoping to find a donor, or family members planning on donating a kidney to a loved one in need.

Here is a link to a press release on stories from series 1, and a short clip: http://www.itv.com/presscentre/ep1week44/time-next-year. ”

If you feel you may want to be on the programme please contact Alex …..
alex.brockman@twofour.co.uk
or
0207 427 8436

The closing date for applications is 5th May with selection/filming shortly after. Sooner one applies though the better. This is ONLY for UK residents.

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A small, friendly group of people, in Scotland, have come together to help promote non-directed (altruistic) kidney donation.

Colin posted this as a comment on one of my posts on this website.

Following an initial meeting in Edinburgh with Susan and Pam, we had another meeting last night with donors Chris, Kate and John, and recipient Gus, and as a result have formed an informal group to raise public awareness of altruistic kidney donation in Scotland. We are mostly based in the east, but are happy to include any Scots that wish to join us, and help expand our horizons. We have plans to make presentations to small groups/clubs such as Rotary and WI, but in time we hope to involve the press and broadcast media. The tenth anniversary in September of the change in the law may prove a useful hook for media coverage. The media being what they are, it would be useful to have a well-known personality (either donor or recipient) on our team.

Although we have no official affiliation, we will probably try to work with giveakidney.org, and will also promote your website. Incidentally, that’s a great piece about your donation on their website.

We’re just starting, and have a lot to learn, but our long term aim is to match the number of Scottish donors to the number on the waiting list – quite a challenge! We realise, incidentally, that kidneys are matched throughout the UK, not specifically in one area; it’s just a convenient way of setting a target.

We’d like your help in encouraging other Scots donors (and recipients) to join us. Everyone can help in their own way, be it in giving talks to small groups, being available for one-to-one meetings, helping with distribution of literature, or advising on promotions. We’re a very friendly group, and all of us have found it really enjoyable being able to share our experiences with each other. From there it’s a small step to sharing with others.

Take care,

Colin.

If you are interested in joining them, or want further information, please contact Colin on
haggis{at}acme-properties.co.uk
please replace the {at} with @ …… putting the email in full would attract the spammers unfortunately.

 

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20 Potential Altruistic Kidney Donors

In the last week or so around 20 people have approached me asking about donating their kidney to a stranger.

WOW!

That is just so fantastic. They all were quite serious in wanting to do this having read recently all the publicity surrounding altruistic donation.  Most had already done some research and were eager for more.

If just one of those 20 ended up donating that would still be one person off dialysis and going back to having a normal life and enjoying all thing things that we take for granted.

To those 20 people and to all future potential altruistic donors – Thank you so much for wanting to help someone by giving them the greatest gift you could ever give them – their life back.

Anyone wanting to know more about becoming an altruistic donor, then please check out the links running down the left side of this page, from the top. It will tell you, from the donor perspective, about the evaluation tests, operation and recovery of being an altruistic donor.

Please feel free to contact me http://livingkidneydonation.co.uk/contact.html if you wish to ask more questions or simply want some support while going through the donation process. It is sometimes just great to be able to talk to someone who has been through the same thing.

Again to those 20 people and to everyone – the world over – who has donated or looking into donating a kidney – whether to a stranger or someone they know – a big huge Thank You!!

Di Franks

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Evaluation process to be a Living Kidney Donor – finding a recipient – laparascopic surgery to remove kidney – my recovery

Even though the process was not without its frustrations and last minute blips – I would not hesitate to donate a kidney all over again if I could.
For anyone considering donating a kidney, whether to a relative or friend or to a stranger, the majority of this blog would apply. I have been as honest as I can and not just put a glossy cover on it all.  The events are as they happened and my feelings and thoughts at the time. I hope this blog will enlighten some people as to the process of donating a kidney. It has been a great learning experience for myself as well. Spending so much time with people who have kidney problems and speaking to patients on dialysis or just having had a transplant, and speaking with their families ….. it has opened my eyes even more to the fact more organ donors are needed.  There was nothing in my evaluation or the operation or recovery process that put me off having donated.

Through this journey I have met people on dialysis and they are not living a life, they are surviving a life. Dialysis is life support. Without it they will die – with it they are alive but the quality of life for them and their families is not the sort of life anyone should have to live. They do for years.  Once I knew it was possible to give someone and their family back their life it was just something that, God willing,  I was determined to do.

I also want to thank everyone working at the transplant unit. Everyone was great and made this whole experience good. There was always a smile and more than that, everyone had time for me. I was never made to feel rushed. When it came time for the operation itself I was made to feel very relaxed and the after care was brilliant.

Please scroll down to read my account of being a kidney donor. The first posts are at the bottom of the blog, the latest just below this posting.

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Following several emails asking why I have stopped the evaluation process I just want to say it didn’t stop, I just stopped posting about it back in October as it was important to keep the confidentiality of recipient and donor.  I will post again after several months have passed when I will describe the rest of the evaluation and the donation – in the meantime please scroll down to the bottom of the home page of this blog to read the evaluation process from the start.  
EDIT: I took up posting again and you will find the full account. Links on the left or go to home page and scroll to the bottom to read from the start.
There are also plenty of good (I hope) links and pages on this blog to offer information regarding kidney donation.

If anyone is considering becoming a living donor and would like any information from a donors perspective then please get in contact with me via the contact page or just post a comment and I will get back to you.

Anyone wanting to donate, either non-directed or to a known person and would like some support from someone who has donated then please contact me via the contact form.

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The kidney CT Scan appointment only took 30 mins and I was in and out in a jiffy. 

I had to make sure I was not wearing anything metal so necklace and bra came off. Trousers stayed on as elasticated instead of zipped.  So wearing t-shirt and trousers I lay down on the CT Scanner bed. It was explained to me that first of all they have to “plan” the scan. The scanner will take some x-rays to determine exactly where my kidneys are then the main scan will only scan that part of my abdomen instead of all of it – all clever stuff.  To do this I had my arms stretched out behind my head and about 7 times the bed passed through the scanner stopping over my abdomen. There was a little screen on the outside of it with two “pac man” type faces – quite amusing. This recorded voice would say “breathe in” and the little pac-man on the left would light up. He had his mouth partly open as though he was about to go chasing his lunch … lol … then a voice would say” hold your breath” and the little pac man on the right would light up. His mouth was closed and his cheeks puffed out! …. Holding of the breath lasted between 3 and 5 seconds, so hardly any time at all.  The bed you were on moved out of the scanner as the voice was saying “breathe” – you could see a countdown in seconds also. 

Have to admit when the bed first went under the scanner (check previous post to see image of the scanner, like a doughnut), I didn’t think it was going to stop until it had passed totally over me. Being rather claustrophobic I felt a bit of panic start, but then felt silly when it went no further than it had to so as to cover my abdomen!! It stopped with the outside, that was slightly angled, level with my chin, so that was fine.

Once they had “planned” the scanning area on my body, I then had a canular put into my arm. First salt water was injected in (felt a bit cold) to make sure the canular was inserted correctly. Then they attached the machine that was going to dispense two different amounts of radioactive mixture.  This travels through the body highlighting the kidneys etc so the scanner picks it up and can form the image.

I was told that as the fluid went through me it may feel warm also I may feel like I am doing a pee but I wont be! lol !

When the “warmth” was felt, it was hardly anything, I felt my hands feel lovely and warm, but only fleetingly then the feeling disappeared.  I now know what he means when he said I may think I am doing a pee (not sure if this applies to men also…) but I felt a sort of “warm flowing” sensation as though I was weeing, but I knew I wasn’t because no bladder feeling happened. It was just like the feeling of warmth flowing through my hands. I had a joke with him and said I thought I had actually wet the bed! He said he wasn’t bothered as it would be the student with them that would have to clean it up!! We had a laugh ….

Had to wait a few minutes for the mixture to travel round my body. Then a second dose was injected and this would show up the veins and arteries.  Again felt my hands warm up and the feeling that might be having a pee. I hasten to add this was not an embarassing or unpleasant feeling  and was only a fleeting feeling. Not sure how else to describe it except for how the nurse described it!

With my arms stretched out above my head under the scanner again.  I did twice have to hold my breath.  I was under the scanner I suppose maybe 10 minutes. Was not long at all.  There were some see-through sections in the scanner and you could see the “workings” whizzing around. It also sounded very much like my washing machine when on spin cycle, it even increased the revs just like my machine does! Then it was all over. 

So the whole thing was very quick and totally pain free. None of it was unpleasant and was back home before I knew it.

Now I believe the next stage is that my Consultant will review all the test results to make sure they are all okay. He may order other tests, that would be up to him and he may also wish to see me … or may not!  This is always the hard part – the waiting to hear something.

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CT Scan now booked – 28th October 2009

CT stands for Computerised Tomography. This will be in the Radiology Department.
The CT Scanner is a machine that takes detailed slice-type pictures of the body using x-rays and a computer. Instead of sending out a single X-ray through your body as with ordinary X-rays, several beams are sent simultaneously from different angles. In my case it will result in detailed image of the kidneys, their location, size, the arteries and veins connected to the kidneys. From this image the surgeon can decide which will be the safest kidney to remove.  Although we have two kidneys they are not necessarily identical. One can be larger (my left one is) and they can each have a different number of veins. The fewer the better as far as surgical procedures.

I will be asked to lay on a couch which then moves through the CT machine which will scan my abdomen.  The machine is an open ring-like structure – rather like a doughnut!   I will feel nothing, but will be able to see lights on the machine.  I may be given an injection of a colourless dye which will help to show up the blood vessels.

This is what a CT Scanner can look like.

CT Scanner

CT Scanner

The hospital are great, they promised they would manage to fit in this CT Scan before I went to London and they have. I did not want my time away from home to hold up procedings any more than they had to.

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The purpose of this interview was to make sure that I understood what I was offering to do and that I was not doing this under any sort of coersion. Was not being offered money or any incentive to donate. They also needed to know there was not any underlying mental conditions that could adversely affect my decision making . That I was donating for the right reasons and my life was stable etc etc.

The interview lasted around an hour and basically we just chatted. The doctor asked me about my childhood and schooldays … also about my time while growing up and then questions about my family life past and present. I was also, of course, asked why I wanted to donate. She probed further and asked me how I would feel if say the operation presented problems … if something went wrong – how would I cope. How did I feel about never knowing who the recipient is? Would that bother me. I explained to her that just knowing they were living a better life and enjoying doing things again was plenty to make me smile. I think at the end of our chat she could see that I was a strong person mentally, knew my own mind and had made my decision freely with no coersion from anyone or payment and with full understanding of the whole procedure and risks etc etc.

It is a bit nerve-wracking knowing you are going to be quizzed by a psychiatrist. All one can do is say things as they are.

The doctor had no more questions and asked if I had any. I said I just had one … “Had I passed!” …. lol …. she said there was nothing untoward in our discussions – nothing that would make her query my decision. She would write up her report and send it to those concerned and a copy to me.

Couple of days ago I wrote to the Transplant Nurse Specialist and asked her to remind me of what happens next. We are so near now. I did chat with her a few weeks ago about what happens once the evaluation tests are done – but I never wrote anything down, so I am in a muddle as to what order things happen next. So look forward to her response.

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I was challenged recently to try to explain what drives me to donating to a stranger and what is in it for me. If I were paid a large sum of money, then that could be understood as to the motives behind this. But with no apparent benefit – then why do it? Very good question and not always easy to answer.

Why do people decide to sail around the world or climb the highest mountains in the most atrocious of conditions? They are hailed as Explorers and record breakers and daring and brave! Who have they benefited by doing those things? Don’t get me wrong, they are courageous and brave and have pushed the boundaries of what the body can endure to the limit and beyond and I have great admiration for them. Why then when we decide to help someone lead a better life, we are often viewed as … crazy!

Why do we do anything though? Emotions drive us either to do something or not do something. Emotions that just seem to spring from nowhere.

Sometimes the drive inside us is so strong we just can’t ignore it. I had such  a desire inside me to offer one of my kidneys to someone who needed one. That desire just grew over time. I knew it was something I really wanted to do. Having said that, I did not go into this blindly. Even though my heart kept telling me this was something I wanted to do, reality also told me to investigate this, really look into it and then decide whether heart or head wins! I found nothing to dissuade me from doing this … so my heart won.

What do I get out of donating? I do agree that whenever we give, we do also receive, whether it is a great sense of satisfaction or disappointment should something go wrong.
Read the rest of this entry »

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I thought it might help to just go over what has happened so far, and the evaluation stages left.

I had an initial consultation with the surgeon and a Transplant Specialist Nurse. Various questions regarding my health, past and present and my families health as far as any illnesses they may have had.  My weight and height were checked.

Blood pressure
This gets taken as high blood pressure can cause damage to the kidneys.  Blood pressure is taken more than once during the evaluation period. 

Urine sample
Urine sample is taken and checked for underlying problems such as glucose, protein, bacteria, etc.

I have had blood taken three times and  checked for a variety of things. Blood group, tissue type …. infections, all sorts of things are checked for to make sure you are quite healthy.

Blood tests
Blood samples will be taken which is checked for blood group, tissue type, can show if there is anaemia, various infections etc etc . Various checks on the blood are done to make sure you are quite healthy and the kidney and liver are functioning okay ….

X-rays
A chest x-ray was taken.

Electrocardiogram (ECG)
I had an ECG (Electrocardiogram) where you have electrodes placed on you and your heart is monitored and the electrical impulses of the heart are recorded onto a graph and from that they can tell if there are any weaknesses in the heart.

Renal ultrasound
This is a non-invasive scan.  It  checks that there are two kidneys. Some people are born with only one kidney but are totally unaware of the fact.  The ultrasound can show the size of the kidneys, if there is any scarring or obstructions.   I had a small scar on the top of the right kidney which was probably due to an infection as a child.  It did not affect my ability to donate.  For those who have never had an ultrasound (most pregnant mums have) – then for a kidney ultrasound they wanted it done on a full bladder (that was the hardest part ..lol…). A gel is put onto your abdomen/side and then the technician moves a probe over your abdomen and sides and the probe can “see” your kidneys.  Once she had done the part that required the full bladder I was allowed to go and pee ! Then came back for the rest of the ultrasound. It is totally painless, not at all uncomfortable. The gel was a bit cold but that was all.  None of the tests I have had have been at all uncomfortable.  

A doctor was assigned to me to make sure that everything was being done that should to ensure I was healthy and fit enough to donate.  He checked my weight and height.  Asked me a few questions.   Listened to my heart which sounded okay. Blood pressure was 138/81. Peripheral pulses were present.  His opinion was that I was fit to proceed for further evaluation.  Ideally though I should lose some weight (being 89kb with a height of 1.6m). I also take HRT and was recomended I come off that for the donation. 

(Note: I do not take any form of  HRT which is derived from pregnant mares – such as Premarin etc.  I take kliovance which is plant based.  Speak to your doctor about switching if you are concerned about how the medication is produced).

I am working on the weight loss …. !

I saw the psychologist (see previous blog entry) and that is all fine.

Still to come ….
Psychiatrist Assessment
I am waiting to hear my appointment date for this.  They need to make sure I am fully aware of what I am committing myself to; that I am mentally okay and freely consenting to this procedure.

DMSA
This I have yet to have. It This is where they have to check the anatomy of each kidney. Arteries and veins have to be identified. It is not unusual for a kidney to have more than one artery.  These results go towards making a decision as to which kidney will be removed.   

GFR Test (Isotope Glomerular Filtration Rate).
I also have this to come. I believe I will be having this same day as the DMSA. The GFR is a test to assess the capability of the kidney to ’clear’ the blood of a substance. A small amount of dye is injected into a vein and blood samples are taken at hourly intervals for three/four hours, to measure the renal clearance of the dye. 

Finally I have to see the Consultant Nephrologist again  as he gives the final decision as to whether I am medically fit enough etc to donate a kidney.

All the information is given to an independant Assessor and I have a meeting with him. He  needs to make sure I understand everything etc etc. He then makes a report and presents to the Human Tissue Board and seeks their permission for the donation to go ahead.  The producing of the report and seeking permission can take up to a month in total.

It was explained to me that there was no guarantee that it would be keyhole surgery.  The surgeon would make that decision once both kidneys had been evaluted etc. It is not unusual for a kidney to have more than one artery and vein and if it turns out that there are two or three arteries and/or veins etc, it maybe that the operation would easier  with open surgery.  So that does affect recovery time.  Keyhole surgery – the stay in hospital is shorter by a couple days I believe and the recovery time  is much quicker.

I have some personal committments late Autumn  that are a must to keep and may involve physical activity. So allowing enough time for the donation and full recovery, it may be difficult to make the actual donation any earlier than late November/December.  That is fine and allows plenty of time for the rest of the tests and assessments to take place. Approval for the donation will be sought once my committments are over.  I certainly don’t want to be under any pressure during my recovery especially as I don’t know if keyhole or not – so need to be sure  there is plenty of time afterward to get back to normal.

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10th May

Great news. Got a letter from the Consultant Nephrologist advising that I am fit to proceed to further evaluation although I should lose some weight and come off HRT before being a donor.  The former I am working on! The latter will be fine over the short term and who knows maybe wont need to go back on it.  He is still waiting the results of other blood tests but they should present no problems.

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