For Spring 2013 Newsletter, please click here

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

Stuart Briggs was diagnosed with sarcoidosis in 2010.

Here is Stuart’s story – taken from his website http://www.stuartbriggs.co.uk/sarcoidosis/

Sarcoidosis diagnosis was by lung biopsy on Friday 15th October and skin biopsy on 23rd of December 2010. being diagnosed as a sarcoidosis sufferer was a real shock… 

In 2000, my dentist could not fathom out what was going on with my gums though he did ask if I had diabetes? As my breath sometimes smelt and tasted somewhat metallic-ish which are symptoms, I got checked for diabetes and was all clear. Then, at the Leeds dental hospital, it was mentioned that my gums seemed to be over reacting to plaque and food, etc. but no further action was required. In 2001, I told my X-wife something felt not right with me; was it all in my mind that I just did not feel ok but continued with work and cycling. I told all this to my boss. 

In 2002, I put all my problems down to a difficult divorce and subsequent lack of contact with my sons; without giving too much detail, I lost my job and began on a spiral the wrong way up. Fast forward to 2006, I started going to my Doctors with many various problems, most of these were put down to the personal stress of the previous 4 years. I decided to return to manufacturing (I had re-trained and qualified as a plumber since 2003). 

Managing to get various contracts from CNC machine setter to improvements engineer to manufacturing management, I spent the next couple of years from job to job, some good jobs though still not settling within any of those organisations, to be honest it could be said that my diet (food and drink) did not help. A complete change of working direction – again – was required. 

Start of 2009, a friend managed to help me achieve employment as an Art technician within her school, I also started part time employment as a healthcare support worker, towards to end of 2009 I had decided I found the support worker position more rewarding, something else though, while working in the school I could feel a little nervous when shouting and/or conflict happened in class etc. I was offered a full time position as healthcare support worker at Airedale Hospital. 

Great stuff, found my niche within the hospital, proper enjoyed the work and was able to offer my manufacturing background to help improve the hospital. After 4 weeks, a work colleague mentioned my eyes looked terrible, and so did I feel terrible which ended up a few days on the sick, I returned and got on with my role again; few weeks later, I had another bout of illness but it was difficult trying to explain that I just felt stupidly tired? Returned again and a few weeks later I had a proper bad tummy upset but it was more like cramps than diarrhoea, I returned again but a few weeks later it was the tiredness again, I wondered how am I going to explain this-unfortunately I made a slight excuse but not a complete lie-I cant lie as folks know, I just dislike lies… Back to work and then it was a visit to the BBC as I was taking part on the Genius program. 

Well, my good friend drove us down to London (I have a few good friends!!!), we got to the studios but my eyes started feeling really really not good, this happened through out the recording-haven’t a clue what I looked like on the episode showing as I decided not to watch it. We got back to our hotel and I just needed to lay flat on my tummy with my face tucked well into the pillows, felt terrible. 

On the way home, he took me to the Accident & Emergency, they tested me and simply stated I was having a migraine! I told them I wasn’t as I just felt really really strange. I went back to work the next day, I felt terrible though but I just could not go on the sick yet again, then work colleagues and even patients started asking me what my strange cough was, hmmm-I had been coughing for a few week, but ignored it. I drove home after my shift in June 2010 and haven’t been back since… 

In those first few weeks, I went to A & E 9 times, Doctors many times, still they seemed to just be guessing but mainly that I was having a prolonged attack of Mumps (my face had swollen massively), after 4 weeks and seeing all my Doctors the senior doc simply put his hands up and said they didn’t know and sent me straight away to the Ear Nose Throat & Eye department as a casualty. In the meantime, I had started to really worry.

Upon arriving, I was seen pretty quick, was well checked and she said that I definitely had Mumps? But she wanted the main nose consultant to check me, he checked me and used the endoscopy to check through my left nostril, said he thinks the Mumps is correct but can I wait outside the room while the report is wrote, I still did not agree with him. While waiting, my eyes completely went bonkers, proper painful (I am now glad they did) as by the time I went back in I told him, he had a look and tested for dryness, they were almost completely dry. Upon checking me again, he mentioned Sjogrens Syndrome and sent me for x-ray and bloods (bloods again!!!); in the meantime, my eyes recovered. 

A few days later, I was called to the Hospital, got to the department, went in his office and was told I had shadows in my chest and need a CT scan, I asked was it cancer, he did not know as it was not his department … woah my world caved in, I was now naturally convinced its cancer, gone from Mumps to Sjogrens to Cancer in the space of a few weeks (the fantastic lovely guy who sang with my band had died from cancer just 3 months earlier). In the meantime, I had my left Colon checked as I had some problems in that area – tummy full of air=erm… 

A couple of days later, I had stupendous pains in my eyes and blurred vision, went to the A & E again (twice in 6 hours during the night) and to my surprise they did not know what it was. The next day, I went to the docs first thing, he said my pupils had fixed and were no longer functioning, so I was sent straight to the eye casualty department, BiLateral Uveitis was confirmed, they said it could be related to everything else my body was doing, no more driving – but I also can’t afford it now. 

That wait for the CT scan was the feeling of forever, one week is all I had to wait which is very fast, I had the scan and was told they will contact me (I have never been so scared in my life-I kept breaking down, I needed hugs). I got a call to go see the chest specialist. I went to see him early Sept, got sat down and he said it could be something called Sarcoidosis and appeared non malignant as amongst other things it is a cancer mimicking and masking condition, I needed a lung biopsy, but he wanted this doing by the top man!!! I told him about my ankles, eyes and other things, he had a look and called in other consultants, seems they had never seen all these symptoms on one person before? 

Hmmm, 2 weeks and time for the lung biopsy, those weeks were completely terrifying and in all honestly lonely, I finally realised just how single and alone I was, hey I have the most fantastic of sons, but they only stay with me a maximum 1-2 nights a week. My brother took me to the Hospital, finally went into theatre, had some drugs (the drugs should have subdued me so I didn’t remember it-more on that soon!), laid on my left side and oxygen on nose, throat sprayed, mouth vice’d and kept open, then I looked at this massive tube woah, “just swallow normally Stuart”, clug clug clug, arrggghhh, clug clug “your doing fine Stuart”  clug clug clug, thought I was dying and couldn’t breath, “breath nice and easy through your nose Stuart, your doing fine”, then I saw 3 smaller tubes inserted and taken out, wow what a wierd sensation but then they started removing the tube against the swallowing reaction, CLUG CLUG CLUG WOAH WOAH what is that all about. Once out of theatre, a nurse and porter were waiting for me, they thought I would be subdued but me, I would not shut up talking about music, my music, Hendrix, Zep-talk about talking I was high as a kite ha. 

I should have spent the night in hospital but I got dressed, asked my brother to come and pick me up, discharge notes and off we went. 

15^th of Oct 2010 arrived for me to go see the consultant, everything was confirmed and still in early stages. 

Yeah shock at my healthy self was something weird, in 2009 I took part in a government scheme (Biobank), I have all the paperwork stating I was in the healthiest fittest 3% of the age range 40-69 but now I am probably in the 3% unhealthiest. Its possibly that my forcefulness through the docs and various departments might be a reason why we have caught it early? 

Think what my full thoughts are more and more, potentially I have had this a very long time, hence the dentist in 2000 and my trying to tell my X wife just how ill I could feel, when just having a cold I was absolutely exhausted physically and mentally etc. though never believed by anyone especially the closest one. Did working with very ill folks (who happen to cough and splutter over you) finally trigger it to this? 

My (October 2010) battle of adjustment to Sarcoidosis is just beginning, those very ill folks with this-well what do I say, my complete heartfelt thoughts go to you all and I honestly hope you do improve, having this I cannot pretend I hope you recover, it’s a truth of the word “meaningful”… 

Stuart.

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 smell that you exude.
3.  Take fewer draws from each cigarette (you are going to have to be honest here).
4.  Make the first step to getting expert help.  You can get excellent help from the following:

• Smokefree – information from the NHS. Free smoking helpline 0800 022 4 332 Web: http://www.smokefree.nhs.uk
• http://www.patient.co.uk/health/Smoking-Tips-to-Help-you-Stop.htm

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.
• 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 2012, email us on info@breathingmatters.co.uk with your story and a photo.

GOOD LUCK!

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.

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.

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.

These cards are now out of stock. 

This year, Breathing Matters have teamed up with two online card companies which donate a percentage of sales directly to us.  If you would like to order charity Christmas cards for Breathing Matters this year, please click here  for more information.

We have two styles available, each designed by children, bearing the image of the Breathing Matters windmill logo. 

Each pack contains 10 cards, containing 5 cards of each design.  The cost is £3.99 per pack.  The cost of postage and packing is £2.50.

There is limited stock available and, if you are interested in purchasing some packs, I suggest emailing us on info@breathingmatters.co.uk asap to reserve yours now.

Click here for the Christmas Card ORDER FORM.  Cheques should be made payable to “Breathing Matters UCLH Charity”. 

Please send your completed order form and cheque to: 

Donna Basire, Department of Thoracic Medicine, University College Hospital, UCLH NHS Foundation Trust, 4th Floor East, 250 Euston Road, London NW1 2PG

With generous support from Pad Creative: print & website design agency

Breathing Matters will be producing Christmas Cards this year – the cost of which will go directly towards research work in the Centre for Respiratory Research.

There are 2 styles available, both designed by children.  Packs will include 5 of each design, totalling 10 cards per pack. All cards are A6 (14.8cm x 10.5cm) in size.

Click on ths link to see the images Charity Christmas Cards for Breathing Matters

Price per pack of 10 cards with envelopes is £3.99.  

You can pre-order yours now via info@breathingmatters.co.uk

We are also looking for volunteers to sell these locally for us – if you feel you could do this, please contact Donna Basire on info@breathingmatters.co.uk