Breathing Matters - Centre for Respiratory Research UCL

Spring 2013 Newsletter

donna — Wed, 15 May 2013 06:01:39 +0000

For Spring 2013 Newsletter, please click here

Spring Newsletter 2013 – The Marathon Quiz Answers

donna — Wed, 15 May 2013 05:58:11 +0000

Q. What is the official distance in kilometres for competitive marathon races?
A: 42.195 km

Q: The six races (previously five) that make up the World Marathon Majors are New York, Boston, Chicago, London, Berlin and ________.
A:Tokyo
Q: In recent times, competitive marathon races have been dominated (in number of wins) by runners from which continent?
A: Africa

Q: Women marathon made its official Olympic debut in which year?
A: 1984

Q: True or False.Marathon was one of the medal events at the first modern Olympics (1896). A: True

Hay Fever – It Gets Right Up Your Nose

donna — Mon, 13 May 2013 06:46:04 +0000

What is Hay Fever?

Hay fever (seasonal allergic rhinitis) is an allergy to pollen. The pollen season separates into three main sections:

- Tree pollen - late March to mid-May.
- Grass pollen - mid-May to July.
- Weed pollen - end of June to September

To get the latest pollen forecast, view the met office weather map which provides aUK forecast of the pollen count and provides any hay fever sufferers with an early warning.

Who Gets Hay Fever?

Hay fever is very common. It affects about 2 in 10 people in the UK. It often first develops in school-age children and during the teenage years, but may start even later in life. Hay fever tends to run in families. You are also more likely to develop hay fever if you already have asthma or eczema. A tendency to these atopic illnesses can run in families.

Hay Fever Symptoms

Common symptoms include sneezing, runny or blocked nose, itchy eyes, mouth and throat. Less common are headaches and hives.
Asthma symptoms – such as wheeze and breathlessness, may get worse if you already have asthma. Some people have asthma symptoms only during the hay fever season.
The symptoms may be so bad in some people that they can affect sleep, interfere with school and examinations, or interfere with work.

Hay Fever Prevention

Although it is very difficult to avoid exposure to pollen, there are a number of measures you can take that will help you to minimise exposure and ease the severity of your hay fever symptoms. Following these steps may help provide some relief from your symptoms:

Keep windows closed when at home and overnight. Most pollen is released in the early morning and falls to ground level in the evenings when the air cools.
When outdoors, wear sunglasses to keep pollen out of your eyes. For any outdoor tasks, such as gardening, hay fever sufferers should wear a mask.
Avoid drying clothes outside when pollen counts are high. If you do, shake items before bringing them inside.
Keep car windows closed when driving and fit a pollen filter to reduce the impact of pollen spores.
When indoors: vacuum regularly, avoid bringing fresh flowers indoors, and be aware that pets can bring pollen in on their fur.
Don’t allow smoking in the house as this will irritate the lining of your nose, eyes, throat and airways, making your hay fever symptoms worse.
After being outside, shower and wash your hair to remove pollen.

Hay fever sufferers can benefit from a wide range of medication which can be prescribed by your GP, or alternatively purchased over the counter from your local pharmacy.

Your GP or hospital consultant can help you find the most appropriate treatment for you especially if you also have asthma and other allergies. Treatments include antihistamine tablets or nasal sprays, corticosteroid nasal sprays and drops, nasal decongestants, eye drops, immunotherapy, and alternative therapies.

Treatment for Severe Symptoms

Rarely, a short course of steroid tablets is prescribed for a week or so. For example, for students sitting examinations, A short course is usually safe. However, you should not take steroid tablets for long periods to treat hay fever, as serious side-effects may develop.

A Tribute to Nesta Wade

donna — Wed, 08 May 2013 06:10:04 +0000

My mum was a hard working loveable and caring person and nothing deterred her right up to the last admission into hospital.

In August 2012, mum was diagnosed with breast cancer quickly followed by a left mastectomy soon after. She started her 6 cycle chemotherapy treatment in september which would be followed by herceptin. As soon as mums first cycle of FEC started, mum experienced breathing difficulties and was admitted into hospital and treated for infections, this was ongoing after every cycle of chemo. After 2 cycles of FEC, her oncologists changed her treatment to Docetaxel as it was believed it was affecting her heart function and where her breathing difficulties lied. During this time, mum was being checked out by the cardiologists having echos, X-rays, CT scans and a lot of antibiotics for infections in her lungs.

Eventually, mum was referred to a lung specialist in October 2012 where, in December 2012, after lung function tests and a biopsy, she was diagnosed with early institual lung disease, believed to be caused by chemotherapy.

Four weeks after her lung biopsy in February where she was sent home with no oxygen, 80% sats and low blood gasses, mum was rushed into hospital and put on life support. She fought for 4 1/2 weeks overcoming all the hurdles that was put in front of her!

Unfortunately, mums lungs never recovered and she passed away on 2nd April 2013. We were told that her fibrosis had progressed aggressively whilst she was on life support and she had died of multiple organ failure, severe septic shock, chest sepsis and progressive interstitial lung disease.

This disease is by far the most misunderstood and unforgiving and needs all the funds possible. I still do not understand how something so devastating has no help or cure.

My mum was a diamond and would help anyone and everyone. It kills me that nothing could help her.

Tribute written by Toni Pym, youngest daughter of Nesta Wade

Grandmother, great grand mother, sister, mother, cousin, niece, aunt and everybody’s friend xxx

Portable Oxygen Concentrators – Comparison Chart

donna — Thu, 02 May 2013 13:24:03 +0000

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.

Pulmonary Fibrosis Patient Support Day

donna — Wed, 24 Apr 2013 20:42:44 +0000

The British Association for Lung Research are holding a Pulmonary Fibrosis Patient Support Day in Nottingham on Saturday 13th July 2013.

Topics for discussion will include:

Why IPF occurs
Review of clinical trials in IPF
Lung transplant for IPF
Hoping for the best, planning for the worst
Update on Pirfenidone
Management of cough
Breathlessness management

If you are interested in registering for this event, please download the Registration Form

For more information, click here for the programme. The patient day is free to attend, but places are limited, so book early to avoid disappointment.

Newsletter Winter 2013 – Number Two Quiz Answers

donna — Mon, 04 Mar 2013 11:07:26 +0000

Q: What present is traditionally given on a 2^nd wedding anniversary?

A: Cotton

Q: What is morse code for the number 2?

A: 2 dots, 3 dashes [ . . _ _ _ ]

Q: Who came second in the Olympic Tennis Final 2012?

A: Roger Federer

Q: In which century did Henry II reign?

A: 12^th Century (1139-1189)

Q: What is the birthstone of the second month, February?

A: Amethyst

My Story, by Stewart Armstrong

donna — Wed, 06 Feb 2013 18:16:43 +0000

I am a normal guy of 33 who used to be fit and active when I was a teenager, taking part in athletics at national and county level and then did nothing once I hit my 20′s. I spent a few years in my late 20’s sometimes with a bit of chest pain, or if someone would push my chest it didn’t feel right. I didn’t think much of this just that my chest muscles must be weak. I decided I should get fit and as I used to do a lot of athletics, I would start with running. I made it about a mile and was so out of breathe I couldn’t believe it. Again, I just put this down to being unfit or getting older. I then started coughing a lot and used to carry cough mixture around with me, I just thought I had a cough. It then came to the point that my director at work made me go to see a doctor.

X-Rays showed that I had multiple shadows in my lungs. As you can imagine, your first thought is cancer! Which was made worse by the doctor going over cancer with me. Months and months of tests ruling this disease and that disease out but still cancer hanging over my head!! Which I can tell you is really scary. I would walk 100m and get out of breathe, things were just getting worse and no-one could tell me what was wrong.

In November 2011, I was diagnosed with sarcoidosis (which I had never heard) of the lungs and skin. After looking into this disease, it is more common that I would ever of thought, but I don’t know anyone who has heard of it.

Since then, I have been taking prednisone. As most people know, these types of steroids have a lot of negatives with gaining weight, muscle waste and slight depression being three of them.

In November 2012, I was informed that my lungs had got worse and I had many holes with one being the size of a clementine and my lungs only worked to about 60% of a normal person’s lungs.

I spent the rest of November and December thinking my life was over, Im going to die. I have a disease that doctors don’t seem to understand and that has no cure whatsoever.

After feeling a little bit down after the news I received in November 2012, I was now at the point that I wanted to really challenge myself and my disease. I have started a 12 week training programme to get fit and healthy and transform my fitness level (my doctor is aware of what I am doing). I have taken many before pictures and am documenting everything I am doing and I will be sharing my progress on twitter @StewArmstrong .

The Local paper ‘Sutton Guardian’ interviewed me yesterday.

I aim to prove that anyone, no matter how ill or whatever fitness level you are, anyone can get healthy with the right focus, dedication, training plan and nutrition.

If I can raise a little bit of awareness of sarcoidosis or inspire one person, then I will be very happy.

I hope you can follow me on Twitter @StewArmstrong

A Second Chance at 48

donna — Wed, 06 Feb 2013 08:44:14 +0000

By David Kenningham

I think I have always been lucky. The harder I worked the luckier I got, always in the right place at the right time. However, nothing in my past compared to this.

It was just an ordinary day, not unlike the thousands that had preceded it. I was busy, I was always busy and would have it no other way. I wasn’t stressed any more than usual as I made my way along Grosvenor Street to meet some Middle Eastern clients to pitch for work on their newly acquired Central London property. I thought I had the job anyway and this was a formality, but still my colleague and I were taking no chances. I rang my colleague to say I was on my way, I had all the documents and would be there in 10 minutes. I never made it.

I woke up two days later, I think – it’s still a little hazy.I was in the Heart Hospital, having had a cardiac arrest as I walked down the street.

As I decided to fall over unconscious as my heart stopped, 2 paramedics sitting in their truck on the other side of the road witnessed my collapse. These unnamed saviours reached me, I guess pretty quickly, and understood instantly what was happening. From the state of my suit and the shirt I was wearing at the time, they took no prisoners, not that I’m complaining! I keep the suit and shirt as a reminder, a warning about a previous life.

I’ve been asked since what did I see, was there a great light, did I have an out of body experience? I’m not sure how I missed the opportunity to tell a few tall tales, but the fact is I remember nothing. My memory of that day and the previous day together with my first few days in hospital is pretty much a blank.

A few volts of electricity later, my heart was at least beating enough to get me to the hospital. I understand the paramedics had just finished another call out and were either having a well earned cup of coffee or waiting to be told where to go next. Either way, I wouldn’t be here now if they weren’t there – a debt I can never repay.

I like to think I’ve looked after myself. I love the gym – a place to escape the stresses of the day and dream of past glories. I made it once or twice a week always struggling to find the time but somehow managing to. I was in reasonably good shape, you can always be better, enjoyed a drink – now much more sensibly than my youth and according to my friends was not somebody likely to have a cardiac arrest.

The reality is I think I had the easy part of my illness. My wife had assumed I was stuck on the underground when the office rang to nervously ask if she had heard from me. It wasn’t until she arrived home from the school run and found a police car waiting for our outside the house that she began to to worry. Somehow she kept it together, with a son of 11 who had just started a new school and a daughter of eight she had to.

It is in situations like this where friends come into their own. The support that she received from our close friends was nothing short of awe-inspiring. Everybody in London is always so busy. All our friends were busy, but somehow they found the time to help in ways both big and small. Interrupting well honed routines to take our children up from the school or from the coach to provide tea for them, to drive my wife to and from hospital, to sit with her and support her – the list is endless. It helped my wife maintain a degree of normality with the children until such time as she knew my prognosis and ultimately that I was going to make a full recovery.

What was I doing during this time? It’s hard to say, as I said earlier it all a little hazy, but apparently the hospital got my heart to stabilise, I was chilled down in ice – something I wasn’t desperately pleased about from my body’s reactions according to those who witnessed it and I was monitored to within an inch of my life!

When I woke, I genuinely had no idea why I was in hospital. On the surface I felt fine. I muttered to my very relieved wife that it was only a bit of indigestion and tried to get out of bed. An act painfully restricted by the wires attached to me and the catheter!

After this, my next thought was to get my blackberry – how on earth were work surviving without me? The fact that my brain was so scrambled I couldn’t remember my fairly simple password should have told me that I perhaps was not 100%, but my desire to resume ”normality” was too great. A game of cat and mouse ensued with me asking each new nurse who came into my room for my blackberry and then trying to extract the password from colleagues or remember it myself. It took a fairly stern text message from the head of HR for me to stop – he somehow knew that I would be checking my messages!

It was only then that I started to accept that possibly I had been ill!

After testing, having a defibrilator fitted (my new toy), and celebrating my 49th birthday from my hospital bed, I left hospital 2 weeks later with instructions to take it easy and a bag of pills to make sure I did!

My diagnosis of cardiac sarcoidosis was unusual but not unknown. Those first six weeks at home were probably, in hindsight, the hardest. Struggling to come to terms with being ill, struggling to get my body to respond as I wanted it to. Each day, I was sent to bed in the afternoon for a “rest”, each day I was determined not to sleep only to be woken some 2-3 hours later. I took to emailing my consultants at the Heart Hospital with lots of questions. Judging by the replies, this was not normal practice!!

Slowly but surely I accepted the situation, started to trust others and listened to what I was being told even if I didn’t like what I heard. My six week check up went well and I was allowed to resume gentle exercise. It was little things that I noticed. I registered the look of delight/surprise/pleasure, I’m not sure which, on the face of my consultant (Dr Pantazis) as I bounced down the steps to see him. He had obviously seen me at my worst and was relishing my recovery. Although my request to play a final game of rugby where I promised to avoid taking any “big hits” on my left side where my defibrillator was inserted, must have made him wonder what sort of idiot he had helped save!

I returned to work slowly in mid January, chased from the office by my PA at lunchtime.

I returned to UCLH on a regular basis. It almost felt like home. I became a big fan of all things NHS as the various departments linked to help put me back together. Not that unusual I suspect for anybody in my situation, but all the same impressive and help that was gratefully received.

Telling people that you had a cardiac arrest in the middle of the West End gets an assortment of reactions depending on who you tell. Non-medical people hear cardiac arrest and think heart attack. Medical people just tended to look at me strangely.

For me, the healing process took a giant leap forward on one of my early visits to see Dr Jo Porter. I arrived at the clinic early, I think I was first in and it was quite quiet. I got talking to one of the nurses – I wish I could remember her name – and she asked me the usual, what happened to me why I was here etc. She expressed her amazement and I had the opportunity of asking her what was so unusual. The reply was that out of hospital cardiac arrests have a poor survival rate. I was listening and I remembered and carried around this information for some time. I have no doubt I was told before, but this was the time that I remembered. I’m not sure what it was, but her reaction really stuck with me.

A few days or weeks later, I googled “ cardiac arrest survival rates”. While survival rates are increasing, it does not make good reading.

I think I’ve always been lucky.

What have I learnt from all this. There is lots of stuff that I should have known, but probably didn’t appreciate or think about.

-my care at the Heart Hospital/UCLH where I recovered, was tested, prodded and probed was fantastic. I doubt it could be bettered. The nurses, doctors, consultants were my life savers; friendly, cheerful and helpful. At times, I was amazed at how rude and ungrateful some patients were. I think they thought it was an hotel! The staff had patience I know that I would never have!

- I always felt I made time for my family, but the reality was that my the work/life balance was not as balanced as I thought! My family are my life, but somehow work had won that battle without me realising it!

-friends are irreplaceable. In moments of crisis, you understand and learn the real definition of friendship. They continued the good work started by the hospital.

I write this while on “gardening leave”, having resigned from my job in October after 24 years. I am starting my own practice to enable me to control my work life balance. I will still be working hard, as I love what I do. I will still be as committed as ever for my clients, but will be working on my terms and with the support and understanding of my family.

It is a new beginning. I see it as a second life. A life that was restarted on the pavement of a Mayfair street on 27 September 2011.

Life 1 – 48 years 11 months.

Life 2 – 17 months and counting!!!

A Tribute to Mark Hulme

donna — Mon, 04 Feb 2013 07:49:36 +0000

By Sheila Hulme, Mark’s wife:

Mark, my husband, died from Pulmonary Fibrosis last year, sadly I had not heard of this dreadful disease until Mark was diagnosed with it 7 years ago. Within weeks of diagnosis, he became increasingly ill and became more dependant on oxygen as his lungs ceased to function properly. He knew it was a terminal disease, but typical of Mark he handled it with great dignity and courage.

As the years passed by, he became more breathless and limited in his mobility. He ended up being on oxygen 24 hours a day and virtually housebound.

Mark was a man with a huge zest for life and to see that gradually ebb away, day by day, was devastating for me and the family. Everyone who knew him will always remember his wonderful sense of humour and he just lived to laugh; sadly, in the end, he could not even laugh as it just took too much out of him.

I am desperate to raise the awareness of Pulmonary Fibrosis by supporting the charity Breathing Matters. This charity helps to fund University College London which is one of the leading research establishments trying to find a cure for Pulmonary Fibrosis.

How can you help? I have assembled a team who intend to walk the South Downs Way which is 100 miles long and will take us 6 gruelling days, believe me when I say gruelling! It is a tough one as we are busy training on the Downs in preparation for the walk on 4th May 2013.

WE NEED YOUR SPONSORSHIP TO HELP UCL TO CONTINUE THEIR RESEARCH SO OTHERS DO NOT HAVE TO SUFFER AS MARK DID.

Who are the team? Myself, his elder brother PJ, his two cousins Jeremy and Crispen, his brother-in-law Harvey and his good friend Matt.

The walk itself will start in Winchester and will be over 6 consecutive legs ending in Eastbourne. We would welcome anyone that wants to join us on any of the legs. I will let you know at a later date where we will be starting each day and where we will be staying.

Please, please help if you can – http://www.justgiving.com/PeterHulme.

Thank you.