fighting
pulmonary fibrosis

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Stories from July, 2014

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My Dad, by Chloe Ham

Clive Ham, my dad, was 56 when he was diagnosed with Idiopathic Pulmonary Fibrosis. We never imagined that within 4 years of being diagnosed my dad would lose his fight against this terrible, devastating disease.
 
Dad had always been very active and joined the police cadets at the age of 17. This involved dad taking part in sporting activities like abseiling, kayaking and mountain climbing which he loved to do. Dad was an outdoors person and loved his time as a cadet. From there, he then went on to work in the police force where he stayed for 43 years. Dad was an extremely hard worker and dedicated to his job, but he always found time for his family. Growing up, my brother and I were very fortunate to be taken to so many different places and experience so many different things. He was the person everyone looked up to, went to when we needed help and supported us in whatever life decided to throw at us. My dad was truly the greatest father, most devoted husband and kindest friend we could have ever wished for.
 
I could count on one hand the amount of times dad had been ill or needed to go to the doctors about something, but when he started to get a niggly cough that didn’t seem to be getting any better, dad decided to get it checked out. They referred him for breathing tests and chest x-rays and that was when we were told it was IPF. We’d never heard of IPF before so it came as a shock to all of us, but dad being dad reassured us and said it would all be fine. We knew they were going to be monitoring dad’s breathing so we weren’t too worried about it at the start. As time went on, dad had good days and bad days where the cough seemed to be unbearable for him. On days like these, he looked weak which was not like dad at all.
 
It was in February of this year, however, that dad’s spirits were lifted; during a routine check-up, we were told about a trial drug at UCLH which they were going to consider him for. We were pinning all our hopes on dad being accepted and he was due to go to UCLH to see Dr Porter at the end of April, a week after coming home from our holiday. Sadly, my dad passed away on Monday 7th April, a day into our holiday. He was taken too soon and we are devastated that he never got the opportunity to try this new drugs trial and have a chance of possibly feeling well again.
 
There was no doubt in our minds that the charity we are supporting is Breathing Matters. They do fantastic work into the research of IPF and let’s hope one day we can find a cure for this cruel disease. We are continuing our fundraising efforts and, in September, my friend Nicola is cycling from London to Paris for 4 gruelling days in memory of my dad and to help raise awareness of Idiopathic Pulmonary Fibrosis. Nicola’s fundraising page is http://www.justgiving.com/Nicola-Spray1, If you would like to support Nicola, we would be very grateful for your donation.
 
We love you and miss you so much, dad. You will always be in our thoughts and forever in our hearts. xxxxx

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 www.dh.gov.uk/travellers.
  • 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!