This site uses cookies. You can read how we use them in our privacy policy.

pulmonary fibrosis

and infection

sign up to receive our news and updates

  • This form collects your name and email address so that we can keep you updated with news and information about Breathing Matters. Please check our Privacy Policy to see how we protect and manage your data.



  • Related articles
  • Categories
  • Archives

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
  • 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! 


IPF: The Game Is On, The Game Is Changing …

Until recently, we have had very little to offer patients with Idiopathic Pulmonary Fibrosis (IPF).  The disease is on the increase, tends to affect men in their late middle age, and has a prognosis worse than most cancers (50% of patients will die within three years of diagnosis).

The approach to the patient with presumed IPF, appears primitive compared to the sophisticated approach to the cancer patient. No-one would treat a cancer patient without a biopsy, but only a tiny minority of IPF patients undergo lung biopsy because of the morbidity and mortality associated with this surgical procedure; as a result, most patients receive a diagnosis of IPF on the basis of a history and typical CT scan results. There is a wealth of drugs on offer for the patient with cancer, but until now, there has been limited and conflicting evidence that any drug can alter the course of IPF. 

Until now  ……….  Last week at the American Thoracic Society, new data was released from a number of clinical trials that are published in the latest edition of the New England Journal of Medicine, the most established and reputable international medical journal. 

The studies published included the INPULSIS™-1 and -2 trial (Nintedanib, previously BIBF-1120 in IPF) and the ASCEND trial (Pirfendione in IPF).

Nintedanib is an investigational small molecule tyrosine kinase inhibitor in development by Boehringer Ingelheim for IPF.  It targets growth factors, which have been shown to be potentially involved – the vascular endothelial growth factor receptor (VEGFR), fibroblast growth factor receptor (FGFR), and platelet-derived growth factor receptor (PDGFR).

The two Phase 3 INPULSIS™ Trials of Nintedanib involved a total of 1,061 people with mild to moderate IPF treated for 52 weeks, and showed that Nintedanib reduced the lung function decline compared to placebo. The studies did not follow enough patients for long enough to comment on effects on mortality, but there was a trend towards reduced death rates in the Nintedanib group. The most frequent adverse event was diarrhoea, affecting 61.5% of patients on Nintedanib. 

However, before we get too excited, the patients in INPULSIS™ all had reasonable lung function (average lung capacity was 80% of that predicted and around 2700mls); the lung volume lost in the treated group over a year was 114ml compared with 228ml in the untreated group.  We are talking about small volumes, 114ml ~4% of the total lung volume saved over a year – or the same volume as one third of a can of coke out of a total of nearly 3 x 1 litre bottles. Will this translate into a serious impact on exercise ability and life expectancy?  Will there be effects on mortality given that there were no effects on acute exacerbation frequency? What will be the effect on patients with moderate to severe disease, the ones that are not caught early and perhaps have more progressive, aggressive disease?

The ASCEND trial was the fourth Phase 3 study to look at the effect of Pirfenidone (Esbriet) in 555 patients with IPF.  The American FDA has not licensed this drug, thought to act by inhibiting TGF β1, because the results of the first three trials in IPF were mixed. In the ASCEND trial, Pirfenidone reduced the one year rate of decline in FVC, with evidence, from pooling data from all four studies, that it may also reduce mortality. The patients in ASCEND had worse disease than in INPULSIS™ which may explain why they declined more quickly. Pirfenidone saved ~140mls of lung function per year.

Tempering the enthusiasm of the positive studies, is the realisation that the drugs didn’t make people feel better, stop disease progression, cure the disease or reverse the fibrotic damage – the ultimate therapeutic goals.  Coming with these sobering thoughts was the report of PANTHER-IPF.  Disappointingly, N-acetylcysteine or NAC was shown not to slow the rate of decline in FVC (although it may reduce the toxicity of prednisone and Azathioprine in IPF). However, one drug did offer some promise. FibroGen presented their Phase 2a study of FG-3019, an investigational monoclonal antibody that inhibits connective tissue growth factor (CTGF).  The trial recruited 37 patients with mild to moderate IPF of whom 33 completed 48 weeks of treatment. After 48 weeks of treatment, 12 of the 33 patients (36%) had improved fibrosis (unheard of in IPF before now) and two patients had stable fibrosis. This means that 14 patients (42%) had improved or stable fibrosis, improved lung function and felt better. Eighteen of the 33 patients continued FG-3019 treatment for a second year, and four continued to improve, but the rest worsened.

So where does that leave the patient with IPF and his clinician as the nihilistic approach begins to disperse?  What should we do with the mounting evidence that immunomodulation (with Cyclophosphamide and Rituximab) although beneficial in inflammatory pulmonary fibrosis (PF), such as that associated with rheumatoid arthritis and scleroderma, may increase mortality in IPF?  

More than ever before, we believe that it is essential to make a confident diagnosis in all patients with PF, to separate out those with IPF from those with inflammatory pulmonary fibrosis, and, in many cases, this requires a biopsy of the affected lung.   Our own work establishing non-invasive bronchoscopic cryoscopic lung biopsy to rigorously identify those with IPF, from those with other forms of PF, is set to be a game changer.

Breathing Matters has funded the research that has set the stage for a full application to the NIHR for a proper study on the role of cryoscopic lung biopsy (CLB) in the management of PF of unknown cause. It no longer seems fanciful to imagine a time when a patient with PF will be worked up with a scan and a CLB that will provide an individualised diagnosis; this result will guide the clinician on how best to manage their patient.


Although we are behind our cancer colleagues, (the standard of diagnosis and treatment options that they offer their patients is superior to that offered to patients with PF), the distance is closing, and it will not be long before they feel our toes on their heels!   The game is on……!



Marie’s Ongoing Story of Optimism

Further to Marie’s article on our website at the end of 2013, Marie still keeps her chin up despite ongoing obstacles.  Here is an update that she wanted to share with you for International Day of Happiness, 20th March 2014.


By Marie Maldonado

I was admitted to UCLH on January 27th 2013 and stayed on Ward T08 until February 13th 2013. During this time, my meds were totally changed as we are trying to discover what the ‘nodule’ is that’s been found by CT scan in my right lung. This nodule may be cancerous and has led to Papworth removing me from the transplant list. My extensive research and contacts with lung transplantees all over the world told me that it could be fungal in origin and both Dr Porter and Prof Brown took that on board, and the lab did indeed grow a strange fungus on my sputum. During my first few days on the ward, the team consulted with an expert microbiologist in Bristol and decided which antifungal they would give me. Unfortunately, this new drug (Voriconazole) would be impacted by the Omeprazole which has been shielding me from gastric reflux, part of the Scleroderma package.  The doctors tried removing the Omeprazole from my drug regime and I have been suffering ever since with the most horrible acid reflux/heartburn/indigestion, something that has led to a complete change of diet for me (so perhaps not all bad!) I am now taking Lansoprazole and Ranitidine and the reflux has abated a little, though I am still woken in the night and have to sit chugging Gaviscon for an hour or so.

I asked for a frank talk with Prof Brown about my prognosis and he admitted that I am indeed in end stage fibrosis and basically that I was looking at ‘weeks’. I was discharged with a full care package and now have a carer come in to the flat three times a day as my mobility is limited. I have a wheelchair for hospital visits and my very own ministering angel, who masquerades as my friend, neighbour and ex-colleague, who pushes it for me. To begin with, it was extremely hard to adjust to people letting themselves into my home and doing, very slowly, things that I knew I could do at twice the speed had I only the breath to do them with. Organising the meds has been another challenge as I have nine medications to take in various combinations and at various times throughout the day. However, as time has gone on, it has become much easier as I have been able to get into a routine and as my regular carer has learned what I need doing and how I want it done. (I have turned into an anal mini-Hitler, I’m afraid, sitting like the Queen of Sheba ordering her about.) My friends have been amazing (I never knew I had so many) and I think there have only been two days when I haven’t received a visit, if not from a friend then from a health professional. My social calendar has never been so full. Sometimes, I am grateful when no one is coming as I can then chill out and relax a little more.

It may be because of the meds or it may be the new dietary regime, or it may just be my long held spiritual beliefs bubbling up to the surface again, but I actually feel great!  Indeed, if it weren’t for the fact that I’m very ill, I would be very happy. Hell, I AM very happy! I imagine the doctors think I’m in denial, but I’m truly not; I just have the feeling that, if everything falls into place and the nodule can be seen to be non-cancerous, then I have a very, very, very slim chance of persuading Papworth to put me back on the transplant list and heigh ho, another challenge will begin. (There’s a sense that this period is something of a dry run for what life will be like post transplant, if I ever get that far.) Unfortunately, I don’t think everyone sees it quite this way. The Haringey Palliative Care Nurse whom I have seen has been tremendous as far as practicalities are concerned; she’s obtained bits and pieces of equipment for me and even got my Disability Living Allowance almost tripled. However, her whole focus is on my dying. Let me give you an example: the physio at UCLH arranged for the pulmonary rehab physio from the class I was attending for several months before Christmas to come to my house once a week. He’s another bright young man and he takes me through half an hour or so of gentle exercise with weights, culminating in my ‘walking the hall’. I keep note of how much I do, and each week I increase my score a little or go up a weight. I’m supposed to do this every day, but I truly don’t seem to have the time, plus it is hard to motivate myself when I’m alone. It does make me feel great! When I told the Palliative Nurse about this, she was almost disapproving. I could hear a ‘tut’ and see a shake of the head. I felt she wanted me to stay on the sofa and up the morphine and be comfortable. Unfortunately, Haringey Palliative Care does not go in for any kind of complementary therapies, unlike the Palliatives at UCLH, so my requests for massage, reflexology, etc. have fallen on deaf ears. Luckily, the universe heard my pleas and sent me an aromatherapist who gave me an incredible massage, and yesterday my hairdresser (from Mr Toppers in Tottenham Court Road) came all the way from her home in Brixton to crop my hair. Everything falls into place, like a jigsaw that does itself.

My dietary regime revolves around the reflux and the need not to trigger it. I have taken advice from fellow sufferers and am having some success. No more coffee, chocolate, cheese … in fact, as money is now no object (well, I may as well spend it rather than save for my old age!) I am shopping (or being shopped for) at Planet Organic and Whole Foods Market. I eat only organic, totally healthy food in small portions and I now focus on my food rather than multitasking as I eat. Some of my friends bring me home cooked food to go in the freezer. In fact, the friend coming later today to take me out to Epping Forest is bringing portions of her amazing chicken casserole which we’ll have for lunch before we set off, with a few extra pots to go in the freezer for another day.

I have also taken advantage of having helpers (carers and friends) to tidy and organise my flat, in a very amateur Feng Shui way, to free up energy flow, etc. It works for me, as does surrounding myself with things of beauty. The corners, piled with bits and bobs for years, are being cleared and everything is slowly becoming more organised. It does make a difference. As does practising the Buddhist precept of ‘mindfulness’: organising in my head, for example, what I need to pick up from each room, so that I only have to make one journey.

As far as I can see, end stage fibrosis usually means admission to hospital, possibly an induced coma and then a very quick death. And I wonder if it has to be that way. If more people were able to count their blessings rather than turning their faces to the wall in despair, would their endings at least be easier, gentler and, hard though it is to believe, as enjoyable as mine is proving to be.

A UK First: Cryoscopic Diagnosis of IPF

Dr Mikolasch in action

We are delighted to report that, in early February 2014, UCLH diagnosed idiopathic pulmonary fibrosis from a minimally invasive cryoscopic lung biopsy. This is a UK first and was made possible by Breathing Matters. The cryoscopic lung biopsy (CLB) was performed by Dr Theresia Mikolasch (Breathing Matters ‘Lawrence Matz’ Clinical Fellow) under the supervision of Dr Neal Navani at UCLH.  The cryoscope was part-funded by Breathing Matters with monies donated in memory of Ana Timberlake and Dr Mikolasch, who has driven this project forward, was funded by the Lawrence Matz Memorial Fund. 

By working with patients and relatives to address their concerns, Breathing Matters has developed a crucial area of our service to meet patients’ needs. 

This is important for:

1.  The Patient:  who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, unslightly and painful scar and a chest drain.

2. The histopathologist: who said the quality of the tissue and preservation were excellent and much better than other minimally invasive biopsies due to the freezing during the procedure. 

3. Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis. 

Where do we go from here?:

-A multicentre study to investigate the role of early CLB in the patient pathway in idiopathic ILD.

-The resulting increase in tissue samples will be used to expand our complementary basic science programme.




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




Join The Breathtember Challenge this September

September is Breathtember – Pulmonary Fibrosis Awareness Month

 Get out of Breath for Breathtember

Tweet Tweet!

To help raise awareness, we would ask that supporters tweet different challenges each day in September including the term ‘#Breathtember’ and to ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath could mean:

The important thing is that you tweet your challenge every day including the term ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  This September, we want as many people as possible to see the term ‘#Breathtember’.  To make the biggest impact, the aim is to get the term ‘#Breathtember’ to trend. 

Register on the Breathing Matters website for further details:








Spring 2013 Newsletter

For Spring 2013 Newsletter, please click here

My Story, by Stewart Armstrong

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

Patient Story: Stuart Briggs

Stuart Briggs was diagnosed with sarcoidosis in 2010.

Here is Stuart’s story – taken from his website

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. 

15th 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”…