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Stories from November, 2013

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Surviving the Flu Bug

The ‘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.
  • 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.

 

 

 

 

 

 

 

 

 

 

 

We Need Your Opinion!

Pulmonary Fibrosis Patient Research Priorities Questionnaire

Can you sit? Can you click? Are you a PF patient?
Then make youself a warm drink and spend a few minutes filling in our survey to help other patients with lung fibrosis.

 

Clinical research should address important knowledge gaps or service changes that are relevant to patients. Therefore, UCL and UCLH want to include the views of patients when setting their research priorities. It brings together ‘Working Partnerships’ of patients and clinicians to identify and prioritise unanswered questions that they agree are most important to them. If research addresses these questions, decision-makers will be better equipped to design and deliver health services which best meet patients’ needs.

We are currently setting up a clinical trial for pulmonary fibrosis patients, which looks at reaching an accurate diagnosis of the specific form of pulmonary fibrosis earlier than previously by using a minimally invasive lung biopsy technique that would be delivered as a day procedure. As expert patients, we would very much appreciate your opinion to help us design this study. This is preliminary research to find out what is acceptable to patients in the context of research studies. We are not asking you to participate in any clinical trial.

To complete the survey, please click the folowing link: https://www.surveymonkey.com/s/ZGZQ6J8

Thank you so much for taking the time to help.

 

 

Waiting to Jump for Joy Again

MY ONGOING TRANSPLANT JOURNEY, by Marie Maldonado

Ten years ago, breathing started to become painful for me and climbing stairs became a minor problem. I was diagnosed with ‘fibrosing alveolitis’ which soon changed its name to ‘idiopathic pulmonary fibrosis’. Life continued more or less as normal. Some five years after this first diagnosis, I moved to North London and changed my pulmonologist. During my first appointment with Dr Jo Porter at UCH, I learned that what I have is a rare disease called systemic sclerosis (aka scleroderma.) This is an auto-immune disease which can take several forms. With me, it’s chosen to attack my lungs. But life went on more or less as normal.

Five years down the line, it became obvious that life wasn’t normal any more. I had to stop work. Since 1982, I had been a London Blue Badge tourist guide; a job I loved. Retirement was not an attractive option. In the second half of 2012, I was referred to the scleroderma clinic at Royal Free Hospital and was put on a form of chemotherapy. I only had two infusions, a month apart, when it was discovered that my liver was becoming damaged. A little later, tests revealed two pulmonary embolisms that meant I had to be put on Warfarin. Not long after this, I was tested for pulmonary hypertension and found to have a ‘stiff’ heart. Things were obviously not looking good and I was given ambulatory oxygen. A few more months, and I’m now using oxygen 16 hours a day. The sofa and the TV have become my friends.

Back at UCH, Dr Porter asked – for the second time – if I would consider being evaluated for a lung transplant. My first answer had been ‘no thanks’. This time I took into account the reality of how limited my life had become and agreed to be assessed at Papworth Hospital. I had little hope that they would see me as a suitable candidate: I’m 63 and I live alone. But within a couple of weeks, I had an appointment for a preliminary appointment at Papworth and this seemed to go very well.  I met the transplant doctors and co-ordinators and was given a huge amount of information. Perhaps, more importantly, I was encouraged to ask anything at all about the transplant process. It was explained very clearly that a lung transplant would not necessarily extend my life, but it could certainly give me a far better quality of life. There were plenty of warnings though: I would remain immune suppressed for the rest of my life; thus, there would always be a danger of infection. Rejection is a major problem too and the enormous amount of different medications would open up the possibility of kidney failure, skin cancer and other challenges. All of which, the medical staff stressed, can be dealt with. When they asked me if I still wanted to go ahead, the answer was a huge ‘yes’.

Within a week I was back at Papworth for three days of tests. Everything was explained. Every question answered. I was treated with enormous kindness and consideration throughout and knew that I was in very good hands. On 21st August 2013, to my surprise and delight, I received a phone call to say I was actively on the waiting list and should pack a bag to keep by the door, ready for the call when will tell me that a suitable lung has become available.

That was three months ago. There’s no way of knowing when that call will come. As I see it, there are two possible outcomes: either I die fairly soon, weak, feeble and breathless, or I’m given a new lung. If I survive, I may have anything up to another ten years during which, in spite of being poisoned by all the toxic chemicals I shall be required to ingest every day, in spite of the possibility of rejection, I shall be able to run for buses and walk in the woods and climb stairs and hills and cliffs. And jump for joy. Won’t that be wonderful?

 

My Father, by Manjiry Tamhane,

My Father  – By Manjiry Tamhane, Patron of Breathing Matters

My father was the life and soul of any party. He was laid back, carefree, open-minded and adventurous. He loved comedy and he had his own library of cringe worthy jokes that had my brother and I groaning and laughing throughout our childhood. He came from a humble background but worked and studied hard to provide a better life for his children. His mother, my grandmother, couldn’t read or write let alone speak English but my father, through sheer hard work and determination, went on to become a Partner in a top London architectural firm. His story is not that dissimilar to make others of his generation. He worked hard, saved for the future and enjoyed his time with family and friends.

In the first 72 years of his life, my father was rarely ill, not even a cold. He hardly ever went to see a doctor and had never been admitted to hospital. He was fit, active and apart from a small belly resulting from his love of good food and wine, he was generally in good shape.

In the early summer of 2008, he had flu like symptoms. It was usual but we simply thought that even the mighty could occasionally catch a cold. The symptoms persisted and his breathing became slightly laboured and wheezy. Almost asthmatic. My mother insisted he visit his GP who dismissed it as a simple cold. My mum unconvinced insisted he get checked out more thoroughly. On closer inspection, the doctor agreed that something was not quite right and he was immediately admitted to hospital and placed on oxygen. That was the start of a 5 week journey that would change our lives forever more.

The Diagnosis

My father was admitted to the Royal Free Hospital in London and, after undergoing some tests and chest x-rays, he was diagnosed with Idiopathic Pulmonary Fibrosis. When the doctors told me, I could barely pronounce it let alone understand what it was. My father was in hospital for the first time in his life and looked at my mother and I apologetically for all the fuss and nuisance he was causing. His only concern was getting back home and back to his normal life. Both my mother and father had faith that he would be fine in a few weeks. I sat with the doctors on several occasions during those first two weeks trying to understand what was this disease, what caused it, what were the treatments, what was the life expectancy, what drugs were available. Every question was met with a vague non-committal answer. ‘Idiopathic’ meaning unknown cause, no real treatments, a few drugs but no clear evidence as to whether they would work. As a family, we were lost, confused and scared. The only treatment appeared to be a course of steroids and an oxygen cylinder. Three weeks after, my father was admitted, his condition appeared to stabilise; however, I advised my brother to come back from Australia to see my father as the lack of answers from the doctors gave me a sense that all was not quite as it seemed. My father was scheduled to be released from the hospital the day after my brother arrived. We knew adjustments were required at home. We converted one of the ground floor rooms in to a bedroom and with the help of the hospital we ordered a special bed, organized oxygen tanks at home and portable tanks that would allow him to make short trips. Everything was in place to care for my father back home and give him as normal a life as possible.

The night before he was released, my father caught an infection in the hospital and was immediately moved to an ICU room and placed on a BiPAP machine. The scarring in his lungs made it difficult to create enough oxygen to pass into his bloodstream, increasing the pressure on his heart. His pulse rate was very high which increased his anxiety further. I think the night times were the hardest for him. Listening to all the machines and the beeps in the darkness of an empty room. One day, when the BiPaP was removed to enable him to eat, he told me how much he hated the nights and that all he wanted was to go home. From that moment onwards, I spent every night in the hospital with him.

As the days went on, his breathing became more labored and the pain became more intense and he was prescribed Oromorph.

In the space of less than 5 weeks, I’d gone from thinking that my father would be around for many years to come, to realizing that I might have just a few years to suddenly realizing that it was more like a few months. We arranged a meeting with the consultant in charge and in that final meeting they told us that in all likelihood he had just a few weeks. My brother and I agonized over what to tell our mum and more importantly what to tell my dad. There is no wrong or right answer.

My father died the next morning.

The Relentless Search for Answers

I have read many stories from grieving family members since my father passed away and each of these stories paint a picture of a loving mother or father, sister, brother, uncle who have lost their battle with IPF and the sense of confusion and devastation for the family members left behind.

When the doctors first gave us the diagnosis of IPF, I went straight to the internet to search for information. Back in 2008, there was very little information available. I found a few obscure research papers originating in Japan and the US describing various theories and inconclusive results from various trials and I spent hours pouring through trying to find any information that would help. I couldn’t find any information telling me clearly what the disease was, what caused it and what treatments were available.

Eventually, I did find a US website called the Pulmonary Fibrosis Foundation. It started to provide answers to many of my questions and helped to shed some light for me on this disease.

Information in the UK, however, was sorely lacking. I knew at the time something needed to be done about that, but at the time my own grief and caring for my mother took priority.

Coping With the Grief

There’s no handbook or fast track for dealing with grief. After my brother returned to Australia, I was left to help my mother cope with grief and adjust to life without my father. I’m not sure how one goes from spending 45 years with the same person to suddenly adjusting to be alone. After the initial shock and disbelief comes the anger and depression, and this can last a very long time. My mother was very angry for a long time. She felt cheated, robbed of precious time with my father. To begin with, I tried to make life as easy for her as possible. Sorting out any problems, dealing with all the paperwork and being with her as much as I could. Nothing I did seemed to ease her pain and she became more depressed and angry, refusing to go out and see friends and family. After a year, I realized that she was becoming more and more dependent on me and losing her confidence. Even simple tasks such as ringing the gas board to give them the meter reading became too difficult for her. I knew that once she lost her confidence to cope with everyday problems, she would never regain it. The hardest part for me was slowly withdrawing my support and encouraging her to do things for herself. This was probably the single most important thing that I did for her. By giving her the tools and instructions but forcing her to make the phone calls, arrangements and decisions, she slowly gained her confidence and independence. The tasks became a source of distraction and completion of a task became something that restored her self worth and belief. Slowly, over time, the pain eased and she learnt to adjust and cope. Today, she is independent and out-going.

Each 140 Character Statement Might Reach Someone New and Make Them Aware of an Illness That I Wish I Knew Nothing About

Vicky Reynolds is one of our #Breathtember Champions.  Here is why she joined in the #Breathtember Challenge.

I have been a ‘fully fledged’ runner since January 2012 and the process of running, distance especially, is now an integral part of my life. There are few things I enjoy more than being able to head out with a carefully-crafted playlist and let my mind drift while singing along. I count myself incredibly lucky to be able to do this. Sadly, not everyone is as lucky as I am.

My dad – an A-grade athlete across the board in his younger years – was diagnosed with idiopathic pulmonary fibrosis (IPF) at the start of 2012. For the sufferer, knowing your lungs are deteriorating is a frightening and – in my dad’s case especially – frustrating thing. As a family member, it is heart-breaking and the feeling of powerlessness is overwhelming. As a runner, I now count every single step as a blessing.

I found Breathing Matters by chance after Dad was first diagnosed and we were scrambling around for information. As time went on, Dad collected a variety of specialists, the Breathing Matters website got an update and we found out more information because we knew where to look. I realized that awareness is key to making information accessible to those at the start of their journey with IPF and also focusing the minds of those who can help. That’s why #Breathtember really struck me.

I can now run without really thinking, so I challenged myself to think about it and document some form of training every day to show how lucky I am to be able to do it. Added complexity would be provided by trips away with work for 11 days of the month, meaning that I would have to fit in an appropriate activity around fluctuating time-zones, local customs, client demands and workloads. I would also be away for a birthday weekend, which would contribute its own set of obstacles…

I always regarded Twitter as an annoyance I didn’t really ‘get’, so setting up @VicksIsRunning (https://twitter.com/VicksIsRunning) was a challenge on many levels. I left it until about a week into the month before I let people know what I was doing so I could check I was technologically capable. By then I had potentially been tweeting and posting photos since 31st August, but it was entirely possible I had just been sending messages to myself.

People listened. I gathered some followers, had some encouraging responses and set up a blog (http://vicksisrunning.wordpress.com/) so I could explain things a bit more. I contacted Breathing Matters and they were listening too; they even sent me some banners to wear (they’ve since made it to the Oxford Half Marathon). At times it was a bit stressful and I worried I wouldn’t find anything to say, but I always seemed to see or hear something and as the month went on it became easier. I made a montage of all my photos at the end and it was quite emotional thinking back over everything; a highlight (possibly through sleep-deprivation) was my trip to Abu Dhabi I think.

It’s amazing how something you do every day takes on a whole new sense when you shift your focus around a bit: people were watching me and every Tweet I made was read by someone. Each 140 character statement might reach someone new and make them aware of an illness that I wish I knew nothing about. It also meant I had to think about that illness – and what it meant – every single day, which is something I had previously deliberately tried not to do. That was very hard and incredibly upsetting at times, but has actually helped me feel like I have things much more under control – in my own head at least!

I caught up with some friends last week and one of them mentioned that they had been following what I was up to, which started a group conversation about the charity and the illness. Knowing that I have increased awareness among a few people has been amazing, but increasing my own, albeit in a very different way, came as a complete surprise and one for which I am exceptionally grateful.

I’ve kept it all up too, so if you fancy having a look through the archive and maybe keeping up with what I’ve been doing since September that it’s all there. That way I’ll hopefully have even more followers in time for next year…

Help Us By Simply Shopping!

Breathing Matters/UCLH Charity has signed up to a fantastic scheme where supporters can raise money for us at absolutely no cost to themselves – just by going about their normal online shopping.

The scheme is called ‘Give as you Live’.  All you have to do is shop online with your favourite stores through ‘Give as you Live’.  A percentage of every online purchase you make will go directly to Breathing Matters (via UCLH Charity).  The stores are donating, not you – so there really is at no extra cost to supporters.

Over 3,000 retailers have signed up – everything from Amazon to Sainsburys, insurance brokers to holiday companies – you name it, you can pretty much buy it through ‘Give as you Live’.  It is 100% secure.

It is a very simple process to sign up.  All you need to do is install and shop through ‘Give as you Live’. 

Watch this ‘How it works’ video to learn more about ‘Give as you Live’:  http://www.giveasyoulive.com/howitworks

Remember to add ‘UCLH Charity’ as your preferred charity and all donations will come to Breathing Matters. 

We would be very grateful if you could get all your friends and family to do this too … especially during this busy spending period!

Every little helps!

Which Type of Christmas Charity Supporter are you?

Christmas is a time to remember our loved ones that are sadly not able to join us at this family festive season. Christmas is also a time for charity.

Many of you each year want to raise money and support a charity around this time, often in tribute to a loved one to keep their memory alive or to help make a difference.

There are many types of Christmas charity supporters:

There are the ‘doers’, who organise charity events, such as mulled wine and stilton evenings; Christmas present-making arts and crafts afternoons; a Santa run, Christmas carol singing or a rock choir concert, and the good old Christmas bazaars.

Then, there are the ‘goers’, who attend all charity events, those with a voice for the choir, those with a taste for mulled wine, those who love making things. Importantly, those without whom these events would flounder.

And there are the ‘givers’, who readily donate bric-a-brac to the stalls, who bring food/wine to the evenings, who give money to charity rather than buy too many presents, who donate fluffy toys to the teddy bear tombola, who buy charity Christmas cards.

Which type of supporter are you? Do you like to get stuck in and organise Christmas charity events? Do you love the social whirl of going to all the Christmas dos? Do you love giving? Perhaps you are a combination of all the above. If so, we applaud you!

Whatever your type, Christmas wouldn’t be the same without you!!!

 

World Pneumonia Day, 12.11.13

Pneumonia is the most severe lung infection there is. It caused by bacterial or viral infection of the deep parts of the lung, called the alveoli. Pneumonia is becoming more common in the UK, with the number of patients having it increased by a third. Although many patients can be treated safely at home with antibiotics, about 30% of patients will have to be admitted to hospital for treatment and, of these, 10% will need to be treated on intensive care. Despite effective antibiotics, over 10% of patients with pneumonia admitted to hospital will die of the disease, accounting for an estimated 65,000 deaths per year in the UK.

Unfortunately the existing vaccine used in adults against the commonest cause of pneumonia, Streptococcus pneumoniae, is not effective. We desperately need more effective treatments and preventative strategies against this common and often fatal disease.

Please raise awareness and support us today.

Autumn 2013 Newsletter: Quiz Answers

The Breathing Quiz – Answers

1.The lungs are the organs that let us breathe.  In an average lifetime, how many breaths does a person take?
    Half a billion breaths  
 
2.How many litres of air can a lung hold at full capacity?
    4-6 litres  
 
3.Before the First World War, what did glassblowers eat to improve their lung power?
     Snails – they believed eating snails would increase lung power and ward off TB  
 
4.If all the different air tubes in the lungs were joined end to end, how many miles would they stretch?
    30 miles  
 
5.Lung disease caused by tobacco use is the cause of death in how many adults worldwide?
    1 in 10 
 
 

Autumn 2013 Newsletter

For the Autumn 2013 Newsletter, please click here