Update on Rachy

Hello Everyone,

It's Holly here! Just dropping by to give you an update on our lovely patient ambassador Rachael Wakefield... She continues to progress well after her double lung transplant but it is a long road to recovery and it's not without its hiccups along the way, which is to be expected after such a huge operation!

Rachy is currently fighting an infection (pseudomonas) in her new puffers but the fab transplant team are onto it with strong antibiotics and regular bronchoscopies.

Rachy currently is still on overnight ventilation due to her right lung being a bit naughty but this will hopefully be reduced in time and she will hopefully get the tracheotomy tube out soon too (she will be very happy to be able to finally talk!) The doctors still remain happy with everything and Rachy is keeping the physios on their toes by working on improving her lungs.

I am in regular contact with Rachy and her Mum, they are both in good spirits and are grateful for all the messages of support. You can keep up to date with Rachy's progress on her blog here: http://lungs-for-life.blogspot.com/

Of course Rachy's transplant wouldn't have happened if it had not been for someone signing the Organ Donor Register and their family agreeing to donation. If you want to give someone like Rachy a second chance at life, please consider signing the Organ Donor Register too.

Thank you, x

London Marathon & Manchester 10km Run

Well, Sue Strang certainly did put in a marathon effort and finished the London Marathon in a very respectable 3hours & 41 minutes and manged to raise over £1500! Thank Sue, you're a superstar!!

In the spirit of all things running, we've still got one place left for the Manchester 10km run in May. Please let matt@lltgl.org.uk know if you're interested in taking part. Closing deadline is Wednesday 28th April!!

We've got some great people together for the 2010 run including LLTGL's own trustee, Pops! Take a look at those taking part on their Just Giving pages below:
www.justgiving.com/mrbrave
www.justgiving.com/popsbarham
www.justgiving.com/tim-gibson
www.justgiving.com/harry-barhamlltgl

Please help out where you can or if you in /near Manchester, let us know and we can see where the Team are to support!

Thanks
Matt

A Marathon Effort...

Sue Strang is running the London Marathon for LLTGL

Sue is running the marathon for her “lil sis” Carol Beckett, who received a vital liver transplant in 2008. It’s quite an amazing story of how a family pulled together in a time of need. Read more about it on her sponsorship page below!

With only three days to go until the big run, we wanted to wish Sue all the best in getting to the finish line! She's already gone through a marathon effort of raising over £1,000 and you can still help with her efforts at http://uk.virginmoneygiving.com/suestrang

GO SUE, we’ll be thinking of you this weekend!!!

Recording of incorrect data on the NHS Organ Donor Register

The stories and reports surrounding the recording of incorrect data on the Organ Donor Register are very confusing. The basic important facts are as follows:

- This error only affects people who registered through the DVLA. All those potentially affected have been identified, and are being contacted by NHSBT. Data from their files will not be used until they have been spoken to and details have been verified.

- The error is not that people have been incorrectly recorded as wanting to donate, rather their specific preferences as to which organs they do and do not want to donate have been incorrectly recorded.

- NHSBT says: “There are a small number of cases, 21 over the past six years, where the person has died and their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual’s preferences.”

We have issued the following statement in response to this story:

LLTGL are reassured that the issue of data being incorrectly recorded on the Organ Donor Register is being thoroughly investigated. This error means that within the 16 million willing registered donors, there are a number that registered through the DVLA, whose specific preferences have been incorrectly recorded. Those potentially affected have been identified and are being contacted, and any donations that have taken place involving affected parties have done so with the family’s explicit consent.

We hope that the public do not let this error, which is now being investigated and rectified, detract from the importance of giving the gift of life. When considering organ donation, it is vital to discuss your wishes with your next of kin, to ensure that they are aware of your exact preferences.

Click here to read the full statement from NHSBT. Click here to download and read the full statement from the Donor Family Network.

BTS Congress 2010 - A lighter side

The BTS Congress was not all work and no play and LLTGL were pleased to raise awareness by providing t-shirts for 4 of the teams in the 5 aside Football Tournament between North and South Thames Transplant Centres!

There were 4 teams each from North and South Thames comprising people from all aspects of the transplant profession - researchers, scientists, surgeons et al. The North Thames teams were organised by Mr Bimbi Fernando (Royal Free Hospital), Mr Roberto Cacciola (Royal London Hospital) and Mr Vassilios Papalois (Hammersmith Hospital) whilst the South Thames teams were organised by Mr Geoffrey Koffman.

We didn't get any scores but, judging by the happy faces, and a few trophies, a good time was had by all!

Back row, left to right :
Bimbi Fernando, Samir Damji, Vassilios Papalois, Ben Lindsay, Indy Singh, Martin Drage, P Chowdhury, Chris Koffman, Geoff Koffman, ?, David Game, Jonathan Olsburgh

Bottom row left to right:
Stephen West, Maura Appleby, Janet Lee, Jeremy Crane, Joe Burke, Karim Hamaoui, Gregor Bartel, Jack Galliford

British Transplant Society Annual Congress

Hi all, it's Mandy here with my first blog, a very overdue update on LLTGL's presence at the British Transplant Society (BTS) Annual Congress which washeld in Kensington, London from February 17 - 19th.

This annual event was the 13th since the society was formed in 1972 for all professionals working in the transplant field from nurses to scientists to surgeons and ethicists, the Congress also draws interest from patients and charities as well (www.bts.org.uk). Over the three days of the conference there were approximately 700 people in attendance and this was a great opportunity for us to show case a couple of our activities, and gain more awareness of LLTGL within the transplant community.

The Congress itself had a packed schedule of lectures and workshops with experts from every aspect of transplantation talking about the latest techniques, research and results.

We chose to highlight three aspects of our work:

- Robyn's Rainbows (don't forget that you can donate a Rainbow to someone on www.justgiving.com/robynsrainbows, or nominate someone to receive on by emailing http://www.blogger.com/rainbow@lltgl.org.uk with details of who you are, who they are (and where they are) and why you think they deserve a rainbow.

- Our Speakers Program - we piloted this in February and is our initiative, using a tried and tested method of training people with direct experience of transplant (donor/recipient or family/close friend of either) to talk about their experience of organ donation because that is the most powerful way of getting our message across. We will formally launch this shortly, but in the mean time please feel free to email http://www.blogger.com/speakers@lltgl.org.uk if you are interested in this.

- Our co-operation with the Donor Family Network, by sharing the pamphlet of quotes from donor families which we co-funded.

We found that people were very interested and many had heard of us and even Robyn's Rainbows - though Chris Rudge's (Transplant Tsar) inclusion of LLTGL in his opening presentation, certainly helped! It was also a great way of meeting some of the many people who have been great supporters of ours from the DoH and NHSBT as well as making new contacts.

I must thank Tessa Hund who ably ran the stall for the Congress and two fantastic new volunteers for us, Sarah Illic who spent two days on the stall - Sarah received a kidney from a friend late last year after some 6 years on dialysis, and Lynne Wilson who was on our first Speakers Training Course, whose mother was an Organ Donor after her sudden and untimely death some years ago.

I would also like to thank Mr Vassilios Papalois (Transplant Surgeon) and Prof Anthony Warrens both of The West London Renal & Transplant Centre /

Imperial College NHS Healthcare Trust who co-chaired the Congress and facilitated our stand.



Mandy