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Stories from July, 2012

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Portable Oxygen Concentrators – Comparison Table

Leading up to the summer holidays, Breathing Matters have been asked about the different portable oxygen concentrators (POCs) available for purchase. 

We thought we would put together a table of POCs on the current market to make it easier for you to make a considered opinion on which to buy.

Please click the following link: Comparison table of oxygen concentrators_2012

We hope this helps.

We would welcome patient reviews on any of these products.

Breathing Matters Golf Day – a Fitting Tribute to Graham Smith

Graham Smith was diagnosed with bronchiectasis at the tender age of 5 years old and was told there was no cure.  Professor Pilcher, a lung surgeon at UCH, wanted to help Graham and, even though he had never operated on a child before, was willing to try and remove the diseased lobes.  At aged 7, the first lower lobe was removed, and a year later, the other lower lobe was removed.  The surgery worked.  Professor Pilcher saw Graham every year until he retired.

Graham was fine for years, playing golf and tennis.  However, his chest infections increased with age, he had pneumonia twice and he was told that cells from the original disease had returned.  Graham sadly passed away on 13th February 2011, aged 74 years.

Graham had told his wife, Rosemary, that he would like to leave money to respiratory research at UCH as he was always grateful that Professor Pilcher’s research gave him a wonderful life and a family to love.

As a fitting tribute to Graham, Rosemary and her family and friends organised a wonderful day of golf on Thursday, 24th May 2012, on Graham’s birthday.

Over 50 golfers attended the day and a further 20 came to support them and join in the prize-giving buffet afterwards.  Mini-fundraising events during the day included a putting competition, a sweepstake on the winning score, a raffle and an auction.

To top all this, Graham had been an avid Arsenal supporter since 1947 and they were lucky to have the former Arsenal goalkeeper and broadcaster, Bob Wilson, playing golf alongside Graham’s friends and family.

Dr Jeremy Brown from Breathing Matters came along to present the prizes to the winners.

Rosemary and her family raised a massive £1743 on the day, which raises their total fundraising for Breathing Matters throughout the last year to over £3000!

Dr Brown says, “We are delighted that this money will help us begin to look at gene activity in patients with different types of bronchiectasis; this will help identify markers for patients with poorly controlled disease and for some of the specific causes of bronchiectasis.”.

Breathing Matters would like to send a massive thank you to Rosemary and family for organising such an amazing, worthwhile day, and to everyone who came along to play golf in memory of Graham.

UCLH Event, National Transplant Week, 12.7.12

Breathing Matters attended this important event at UCLH raising awareness of the importance of organ transplantation.  This event was held during National Transplant Week.

This was an opportunity for staff, patients and the public to talk to specialist nurses and members of the Trust’s organ donation committee about the issue of organ donation.

Almost 10,000 people in the UK currently need a transplant – of these around 1,000 will die waiting as there are not enough organs available with three people dying every day whilst on the transplant waiting list. Only 29% of the public have joined the NHS Organ Donor Register.

Sarah Jones, UCLH specialist nurse for organ donation, said: “We want to give people information about the issue and encourage them to view it as an option which they can talk over with their loved ones. It is not a subject we should shy away from. Often people will sign up to the donor register, but do not tell their families. The first they may know about it is when they are in a state of bereavement. This event will be an opportunity for people to ask questions and reflect on the issue.”

Please, please do join the NHS Organ Donor Register today.  You can do this via the link on the Breathing Matters home page https://www.breathingmatters.co.uk/

It truly does save lives.

Below is Dr Jo Porter (in the middle) with the transplant nurse, the vicar, Patrick Collins who donated his wife’s organs when she died at UCLH and Amanda Gibbon who gave her husband a kidney in 2008.

Breathing Matters UCLH Charity Bike Ride, Richmond Park, 17th June 2012

We had an amazing day at this year’s UCLH Charity Bike Ride in the beautiful Richmond Park in West London. Not only was it in the middle of Bike Week, it was also Father’s Day, and a lot of fathers and children were out en masse enjoying a great family day out.

Thanks to the sun, who kept us company this year, we were able to have a leisurely picnic afterwards too!

Almost 80 supporters came to support Breathing Matters along with other UCLH Charity Funds, the Leukaemia and Lymphoma Unit, Rays of Hope and TTP Research. 

Rebecca with Dexter

Cyclists included patients, relatives and friends, doctors, researchers and scientists from the Centre for Respiratory Research, nurses and other staff from UCLH along with lots of dads and families with children as young as 7 years. 

We also had a cute and cuddly canine supporter this year, Dexter, who kept up with all the cyclists.  He was a hit with the kids … and a few of the grown-ups too. 

Breathing Matters raised over £3,600 – which is an amazing amount. 

Thank you to all our volunteers!

The organisers, Donna Basire, Sara Goldman and Ken Watling were extremely fortunate to have a fabulous and plentiful group of volunteers assisting us this year who helped with marshalling the gates, registering the cyclists and welcoming the riders back with a smile, a cheer and lots of goodies. 

Breathing Matters would especially like to thank Adele O’Sullivan, Marianne O’Sullivan, Gillian Whatley, Maria Koulopoulou and John and Maisie McCready – thank you so much for your much needed support.

If you would like to donate to this worthwhile cause, please visit http://www.justgiving.com/Joanna-Porter-2012  Thank you.

 

 

 

 

 

 

 

National Transplant Week starts on 9th July 2012

The gift of an organ to a patient who is in desperate need can be life-saving. A single individual can, after their death, donate their organs to save the lives and sight of up to 7 different people. Many people in the UK are waiting for organs to be donated and, every day, three people (1000 people per year) die waiting. Whilst the majority of people in the UK would accept an organ for themselves or their children to save their lives, only 29% are actually on the organ donor list.

The NHS Blood and Transplant team are promoting this important issue in easy-to-read infographics; the full series is found at:  http://www.organdonation.nhs.uk/ukt/campaigns/campaign-materials.asp

So, join the NHS Organ Donor Register today.  It only takes a few minutes to do this online at http://bit.ly/7t7JBa 

It could be the best gift you ever give.

A Tribute to Dorothy Parkinson

By Dorothy’s daugher, Janice Fletcher

Dorothy Parkinson (nee Bell) was born in August 1930 in Salford to Ethel and Walter Bell and died on 11th May 2012 with her loving family by her side.   A devoted loving, hard working and loved dear wife to Ive (Ivor), mum to Janice and Ken, nan to Clare and Drew and loving aunty, sister-in-law and friend to all.  

Dot was diagnosed with rheumatoid arthritis many years ago and later with Sjogrens’s syndrome also known as Mikulicz disease and Sicca syndrome, a systemic autoimmune disease in which immune cells attack and destroy the exocrine glands that produce tears and saliva.  She also suffered with mixed connective tissue disease, emphysema, asbestosis, pulmonary fibrosis and pulmonary hypertension.  

In 2003, she wasn’t feeling too good and, as usual, thought she would ‘wash the car’ to try and work off her feeling unwell.  She suffered a severe heart attack and had a stent operation shortly afterwards.  More recently in April 2012, even though she was now virtually house bound, she was feeling unwell again and after being admitted to hospital she had suffered a pulmonary embolism.

During her last few weeks, she suffered two severe nose bleeds due to her medication and was hospitalised.  Her final days that remained we watched her deteriorate rapidly; it was so incredibly quick.  We found out that her blood was seriously thin and she was taken into hospital where we were told she was a very poorly lady; she had a kidney infection, she had pneumonia, oedema and, finally, she lost her battle to stay with us.

During all this endurance, she fought so bravely and courageously with dignity and fight to overcome her illnesses. Her breathing which had prevented her from having a quality life for her last twelve months was a huge battle in itself, but throughout all of these illnesses, her fun-loving determined, caring, loving character would shine through, even in her last conscious hours.  

God Bless you mum.  We will love and miss you forever!   You will be always in our thoughts, sleep peacefully xxxxx

If you read Dot’s story, please help and donate as much or as little as you can, we need to know more about this awful debilitating disease.  http://www.justgiving.com/DorothyParkinson