My name is Ron Flewett I am 57 and live with my wife Maxine near Lincoln in the UK.
It all started with a cough and feeling out of breath when walking up a flight of stairs or slight incline. I visited my local GP several times, and the x-rays kept coming back clear. He advised me there was nothing wrong and it could be my age.
I met Maxine, who now is my wife, and moved to Lincolnshire. Maxine was extremely concerned about the cough and she kept on noticing how out of breath I was just doing normal household chores, so I returned to the doctor.
The new doctor sent me for several medications including an inhaler. The symptoms remained, so he referred me to the local NHS Hospital. The consultant undertook a ct scan and this showed fibrosing of the lungs. His comments at that time was, “I WILL NOT TREAT YOU RON, AS I COULD MAKE YOUR CONDITION WORSE.” So he referred me to a multi-disciplinary hospital. His words have lived with me ever since.
This is where my journey began.
I had many tests; walk test, breathing tests, lung biopsy, bronchoscopy and lung lavage from Nov 2013 to April 2014. I was eventually diagnosed with a condition called idiopathic pulmonary fibrosis (IPF), an illness that I had never heard of.
As you can imagine, being told at the age of 54 you have 3-5 years to live, in not the sort of news you want to hear at a young age. My friends and family used to say me at the diagnosis stage, “at least its not cancer,” but what they failed to understand was, there is no cure. It’s hard convincing people you are ill, when you look so well.
After several bouts of depression, I could let it take over my life or I could do something about it. I like to call it the negative or positive road. I chose the positive road, where I wanted to make a difference and raise as much awareness of this awful illness.
A turning point came when I contacted the British Lung Foundation, they involved me in their campaigns, so I have been lucky in being involved and I look back in what I have achieved and cannot believe what I have done.
* Talk in front of MP’s at houses of parliament
* Meeting MEP’s in Brussels
* Patient representative for appraisal of Pirfenidone.
* Numerous Appearance on radio before and after my Triath-a-Ron in 2015
* Being filmed by Roche Pharmaceuticals for their website.
* Meeting European Consultants and interviewing them about IPF
* Talks in front of Barristers for Boehringer Ingelheim
* Being part of the EU-IPFF Federation.
* Trustee of a charity (Pulmonary Fibrosis Trust)
* Chair of a support group
Last year my consultant advised me that due to a steep decline in lung capacity, to do the things I want to do in 2017, as later I may be on the transplant list. Hence my wife and I decided on a bucket list. We have visited over 33 countries via cruising and with the help of oxygen and the patientMpower app!
The patientMpower app allows me to monitor my condition, FVC, FEV1, blood pressure, temperature, oxygen levels and my mental state. The results are monitored and hopefully working together, we may be able to predict if an exacerbation will occur, so we can try and prevent it.
My moto is “Stay positive. Don’t die of IPF. Learn to live with IPF, and as we say at our support group, “No surrender to IPF.”