fighting
pulmonary fibrosis

and infection

sign up to receive quarterly newsletters

Stories from February, 2013

articles

  • Related articles
  • Categories
  • Archives

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

A Second Chance at 48

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

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.