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Christmas is A-Coming

christmas-tree-blue-vector-illustrationFor those of you interested in supporting us by buying charity Christmas cards, you can order directly online with CharityChristmasCards.com

CharityChristmasCards.com sell both paper cards and, for those of you who are more green in nature, they also provide online cards to email to your friends and family. They also supply corporate cards so you can put your company name on the front cover.  Up to 50p per card is donated directly to Breathing Matters.

For those of you around the London area, why not come along to our Charity Christmas stall on Friday 25.11.16 11am-2pm at UCH Atrium where we will be selling stocking fillers, jewellery and designer handmade Christmas cards.

If you are interested in purchasing our handmade Christmas cards, which Jane Walker has designed, contact us directly on breathingmatters@ucl.ac.uk

Would you like to find out what type of Christmas charity supporter you are?  Read our article at http://bit.ly/19gNAoH

 

Don’t Let Flu Catch You This Year

bug-chasing-manThe ‘flu, or influenza virus can cause infections all year round, but in the UK, it is most common in the winter. There are many strains, some of which are worse than others, such as swine ‘flu (H1N1 strain) which tends to have a more rapid onset, high fevers and stomach upset and has caused fatalities, often in previously fit adults.  ‘Flu affects 10% of the population each year, but rises to 25-30% during an epidemic. In contrast, adults have approx 2 to 3 colds per year and children 5 to 6.

Do I Have ‘Flu or a Cold?

Features of ‘Flu Features of a Cold
  • Symptoms appear suddenly
  • Leaves you exhausted and unable to move, affecting the whole body
  • Can cause complications, including pneumonia, sometimes fatal
  • Lasts for one week, then you get better
  • Symptoms appear gradually
  • Affects only nose, throat, sinuses and upper chest
  • Still able to function
  • Recover fully in a week

Vaccination Against the ‘Flu

Anyone can get the ‘flu and, the more a person is in close contact with people who have the virus, the more likely they are to get it.  Certain at risk groups are advised to have a ‘flu vaccination. They include:

  • Everyone over the age of 65.
  • People of any age with lung diseases, heart disease, kidney disease, liver disease, diabetes or lowered immunity.
  • Anyone living in a residential or nursing home.
  • Carers of those at risk.

The UK is fortunate to have a safe and effective vaccination against the ‘flu, which is provided free of charge by the NHS. Those most at risk are advised to have a vaccination every year. This is because the ‘flu virus changes slightly every year.  Despite popular belief, the ‘flu vaccination can not give you ‘flu. It’s true that some people experience symptoms of a heavy cold at the same time or just after they’ve had the ‘flu jab – this is simply a coincidence and the symptoms are caused by one of the many common cold viruses in the autumn and winter.  It is still possible to suffer heavy colds after a vaccination, as the ‘flu jab only protects people from the ‘flu virus, not other viruses.

The ‘flu vaccination is available from October each year.  Anyone who thinks they need it should talk to their doctor or nurse.

How to Treat the ‘Flu

Antibiotics are of no use in treating ‘flu. Anti-viral medication is available from the GP for at risk groups, but it needs to be taken early on in the disease to stop the virus multiplying, and may only reduce the symptoms rather than treating the infection.

The best ways to treat the symptoms of flu are:

  • Get plenty of rest. The body uses a lot of energy fighting infections, so resting for the first couple of days gets it off to a good start.
  • Keep warm.
  • Make sure you drink plenty of water to avoid dehydration, and try hot water with lemon, ginger and honey to relieve symptoms such as sore throat.
  • Take paracetamol or anti-inflammatory medicines such as ibuprofen to lower a high temperature and relieve aches.

Always contact your doctor if you’re not getting better after a few days, if you’re unduly short of breath or if you’re coughing up blood or large amounts of yellow or green phlegm.

How to Keep Healthy and Avoid Getting the ‘Flu

  • Keep your immune system strong by eating a healthy diet.healthy-man
  • Take regular exercise.
  • Get enough rest and relaxation.
  • Do not smoke.
  • Take regular vitamins and bump up your vitamin C.
  • Wash your hands often and keep a bottle of antibacterial handclean around.
  • Avoid people who are coughing and sneezing, especially if they’re not covering their mouth and nose.
  • Use and bin your tissues.

Planning a Holiday Abroad? … Are You Fit to Fly?

Flying in an aeroplane is the equivalent to being 5000 to 6000 feet up a mountain.  Think of a mountain twice as high as Ben Nevis, or being a third of the way up Everest.  The air is ‘thinner’ because the pressure is less and, as a result, there is less oxygen.  In fact, the concentration of oxygen falls from 21% at sea level, to about 15%.  Most people will tolerate this, but, if you already have problems breathing, this will become worse.

For those respiratory patients who do not normally need oxygen: Patients who can walk 100 metres on the flat without needing oxygen, and at a steady pace without feeling short of breath, are very unlikely to have a problem in-flight.  These patients are considered safe to fly according to the guidelines issed by the Civil Aviation Authority.  If you can not do this, you should talk to your doctor about the safety of travelling by air.  They will be able to carry out studies where they simulate the oxygen concentration in the aeroplane cabin.  You will be sitting comfortably wearing a close fitting mask that delivers oxygen at a reduced concentration of 15%  They will see what happens to your oxygen saturations over a period of time.  They can then recommend whether or not you need oxygen during the flight.  Short haul flights are less hazardous than longer ones.

For those respiratory patients that already need oxygen: Talk to your doctor about how much oxygen you will need in-flight.  This may be a higher flow rate than you normally use.  You must also remember to arrange oxygen to be available at your holiday destination.  Your local respiratory nurse will be able to offer you advice on this.

For all those patients that need oxygen on the flight: Remember to let the airline and/or travel agent know in good time, ideally a month before you fly.  Some, but not all airlines, charge for the oxygen and it might be worth planning your flight with an airline thay does not charge.  Do not rely on the airline having oxygen avalable at the last minute; the oxygen the airlines carry is for emergencies and would not last very long.

Final checklist once oxygen is sorted … don’t forget:

  • Check your insurance policy covers you for medical costs and return home.  The British Lung Foundation has a list of insurance companies that will insure patients with lung diseases.
  • Bring your EHIC [European health insurance card] if travelling to the EEA or Switzerland.  Phone 08456 062030 or visit www.dh.gov.uk/travellers.
  • Arrange disabled assistance at the airport if required.
  • A letter in your hand luggage detailing your condition and medications.
  • Medication in your hand luggage plus one spare week’s worth.
  • And, most impotantly, don’t forget to have fun! 

 

Breathing Matters’ New Lawrence Matz Clinical Research Fellow

We are delighted to announce that Dr Theresia Mikolasch has been appointed to the post of Lawrence Matz Clinical Research Fellow.

This is such an important appointment.   Our vision is to change the pathway of patients with lung fibrosis.  Many different diseases cause pulmonary fibrosis (PF) and they all have different treatments. We want to find patients early, and diagnose them more accurately so that we can give them the right treatments and avoid using unhelpful medicines that may cause harm.  We wouldn’t treat cancer without a biopsy and we feel that the same should apply to our PF patients.   However, open lung biopsies are painful, require a 3 day stay in hospital and may be dangerous.  For these reasons, many physicians choose to rely on information form CT scans and bronchoscopies to make a diagnosis.

But how will we ever learn anything more about this awful disease?   We are hoping to develop a programme of early lung biopsy in ALL patients with PF with a novel and less invasive approach using our cryoprobe. Cryoscopic biopsy is performed as a day case under a deep sedation through a bronchoscope. We believe that patients will be safer, will suffer none of the long term sequelae (such as pain in the chest wall) of a surgical biopsy.  Dr Mikolasch’s appointment will allow us to get cryoscopic biopsies up and running at UCLH, and we will be the first hospital in theUKto do this for PF.

We can then perform a proper study to compare the results of surgical versus cryoscopic lung biopsies. If we show that the cryoprobe is safe and we can get as much information from the samples as we do from the surgical biopsy, then we will be all set to change the way patients with PF are looked after.  We will be able to ensure that each patient will have a more accurate diagnosis so that we can give them the full facts on their treatment and disease.  We will also have many more samples of PF lung available from many different patients to understand why the disease happens and how we can prevent it much earlier.  

Dr Theresia Mikolasch says, “I have taken time out of my respiratory higher training programme inCambridgeto join the prestigious respiratory research team at UCL.  This post has only been made possible by all your generous donations to Breathing Matters!”

Lawrence Matz was one of the co-founders of Breathing Matters who sadly died in August 2011 whilst awaiting a lung transplant for PF.  This post has been made possible through generous donations by his family and friends.

WE DO STILL NEED YOUR HELP!  Breathing Matters has been able to fund Dr Mikolasch’s research for one year only.  She has already made great leaps, but we really need to fund her for another two to three years to get meaningful results from her work.  If you would like to help fund her research, please email Donna Basire at breathingmatters@ucl.ac.uk

 

 

 

Stark Facts about Pulmonary Fibrosis

  • Men are nearly twice as likely as women to suffer from IPF
  • There are 8000 new cases of IPF every year in the UK.
  • More than 30,000 people are living with IPF in the UK.
  • Without treatment, 50% of IPF sufferers will die within 3 years of diagnosis. Treatment extends life expectancy to 7-8 years.
  • More than 30,000 people will be diagnosed with IPF in the 27 EU countries each year.
  • IPF is more common than all leukaemias combined.
  • Most patients are diagnosed 1 to 12 years after their first symptoms.
  • 5 million people worldwide have IPF.

PLEASE HELP US CHANGE THESE STATISTICS!!!

Spring 2013 Newsletter

For Spring 2013 Newsletter, please click here

New Year’s Resolution: Quit Smoking

It is the New Year, so it’s time for some self-improvement. Have you made New Year’s resolutions before, but failed to keep them? I would argue that a resolution is too restraining and negative, I would prefer to focus on adopting habits that keep you healthy. Let’s concentrate on the smokers amongst you. You know who you are?  Have you tried quitting before or have you persuaded yourself that your genes will protect you from the ravages of cigarettes?

First, think of why you should stop smoking and then, when you have decided to (and this might be the difficult step), take the first teeny weeny step. You do not have to throw all your cigarettes away for good – although that might be one approach. Take a small step, develop a new habit and, once it is taken, you are on the road to being an ‘ex-smoker’.  Keep taking little steps that help you develop little habits and you will achieve your aim.

Take Small Steps

What small steps can you take?  Try these:
1.  Develop a disgust for cigarettes. Spend 5 minutes each day imaging the toxic smoke filling your lungs and turning them black, and large globs of fat being deposited in the blood vessels of your brain, heart and legs. The surgeon teeing you up for an amputation operation, etc. Remind yourself of this every time you smoke.

2.  Toss a coin each day. Heads you smoke that day, tails you don’t.   Or, if that is too difficult, ‘tails’ you don’t smoke until midday or something similar. Keep this going for a year and you may reduce your intake by 50% (provided you don’t smoke twice as many on the smoking days).  On smoke-free days, have a shower, wash your hair, put on clean clothes and enjoy the fresh smell that you exude.

3.  Take fewer draws from each cigarette (you are going to have to be honest here).

4.  As an incentive, you could get yourself sponsored for giving up smoking and help a charity at the same time.

5.  Make the first step to getting expert help.  You can get excellent help from the following:

No matter how small your first step, it is a first step and it will be difficult – if it wasn’t, everyone would do it.  Keep in mind the pluses of being an EX-smoker.  Reward yourself for even a small achievement (not with a cigarette please).

Here are some of the reasons why you should quit (this is taken directly from http://smokefree.nhs.uk/why-quit/health-and-confidence/

Health Benefits

  • You will reduce your risk of developing illness, disability or death caused by cancer, heart or lung disease.
  • You will reduce your risk of gangrene or amputation caused by circulatory problems.
  • You will protect the health of those around you by not exposing them to second-hand smoke.
  • You will reduce the chances of your children suffering from asthma or glue ear.
  • You will improve your fertility levels and your chance of a healthy pregnancy and baby.
  • You will improve your breathing and general fitness.
  • You will enjoy the taste of food more.

Your lifestyle WILL improve (after the short term discomfort)

  • You will save money – as much as several hundred pounds a month, if you’re a heavy smoker.  Perhaps some of this ‘spare’ money could be given to charity!
  • You will no longer smell of stale tobacco.
  • The appearance of your skin and teeth will improve.
  • You will feel more confident in social situations – you won’t be worrying about the second-hand smoke you create anymore.
  • As a non-smoker, you may even find you get approached more often by potential new friends and partners when out socialising.
  • Your home will smell fresh and you will no longer be staining your walls with tar.
  • You will reduce the risk of fire in your home.

Share your own stories with Breathing Matters. We are adding a page to our website to celebrate smokers who have quit.  If you would like to join our gallery of successful quitters in 2013, email us on info@breathingmatters.co.uk with your story and a photo.

GOOD LUCK!

Organ Donation: A True Gift

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.

As well as joining the donor list http://www.uktransplant.org.uk/ukt/Consent.do), it is also important to make sure that your immediate family know that you want to be a donor.  This means that, if they are asked about your wishes, they can consent to the use of your organs for donation, quickly and without any guilt, confident that this is what you would have wanted. 

Recently, I asked some of my non-medical friends if they were organ donors and was surprised that that very few of them are. These are some of the reasons that they gave for their decisions and my answers to them.

1.  Haven’t people woken up from severe brain injury years afterwards? I am worried that if I am a donor I will be declared ‘dead’ even though I may still have a chance of recovery.

Organs are only taken from patients that are on life support machines in Intensive Care and are declared ‘brain dead” or from patients who have died but whose organs can be removed very quickly (within minutes) after their death (realistically this is only possible if patients die in hospital, usually on an intensive care unit). It is true that some patients with severe brain injury may recover up to years later, but these patients are not ‘brain dead’, they may have wide spread brain injury or be in a ‘persistent vegetative state’, but organs would not be taken from these patients as they are not dead.   Brain death is a definite diagnosis that requires a complex series of tests 24 hours apart supervised by at least two experienced, senior and independent doctors registered with the UK General Medical Council. These tests show that there is no viable brain function, the brain will not recover and the lungs and heart can not function at all without life support machines in the Intensive Care Unit.

2.  My sister had a terminal disease and was allowed to die at home, her body stayed with us for a couple of days. If she had been an organ donor, this would not have been possible.

In fact, the only people that can donate organs at the moment are those that are on life support machines on the Intensive care unit who are then shown to be ‘brain dead’ or those that die in hospital whose organs can be removed safely within minutes of their deaths.  Patients with terminal disease are not suitable as organ donors for many other reasons so this would not have interfered with a conscious patient’s last days with her family.

3.  I am worried that, if the doctors know that I am an organ donor, they will not try to keep me alive.
Every doctors’ primary responsibility is to their patients. No doctor would risk your life in the chance that you might save someone else by organ donation. The only way that you can become an organ donor is if you are declared ‘brain-dead’ by two independent doctors using specific tests, or in rare cases if you have already died and your own blood circulation has stopped, but your organs can be taken from your body very quickly, within minutes and kept cool on ice. The UK Donor Ethics Committee meets several times a year to consider ethical issues related to organ donation; they are very conscious that nothing should be done to a patient that is not in their best interests, particularly if they are on the organ donor register.

4. I am too old to be a donor, no-one would want my organs?
There is no upper or lower age limit for joining the register.  Even if you are well into your 60s, some of your organs may be useful to someone. Some individuals may be chronologically old, but with hearts as good as a much younger person. It is best to be on the register and let the doctors decide if they want your organs or not than to use this as an excuse!!

So, join the NHS Organ Donor Register today.  It only takes a few minutes to do this online at http://www.uktransplant.org.uk/ukt/Consent.do). 

It could be the best gift you ever give.

  

 

USA IPF PANTHER Study Press Release

Some of you may have read a recent press release from the investigators of the PANTHER Study in the USA.  This announced that the treatment arms that included Prednisolone and Azathioprine had been stopped and patients had been taken off these treatments as they appeared to increase death rates and hospital admissions compared to the placebo treatments.

The PANTHER study was designed to test various combinations of treatment in patients with definite IPF.  The four treatment groups that patients were randomly assigned to were

(1) Prednisolone and Azathioprine with N Acetyl Cysteine (NAC);

(2) Prednisolone and Azathioprine with placebo;

(3) N Acetyl Cysteine with placebo; or

(4) placebo and placebo (no active treatment). 

As a result, patients left in the study are now on NAC or placebo alone.

We must emphasise that this is a press release only and the full details are not known.

We would not recommend patients to stop taking Prednisolone and Azathioprine without discussing this with their respiratory physician and making an informed decision.  We will be discussing this with all our UCLH patients when they come to clinic over the next month.

The results of this study will be reported in early 2013.

Hilly Worksop

Congratulations to Claire Johnston and her team for running the Worksop Half Marathon at the end of October.  Claire reports “It was a very hilly course”. 

They managed to raise a staggering £1,250 for Breathing Matters. 

A massive thank you to the team.