We have to stop people going through what I've been through

We're very sad that Peter Phillips passed away from IPF on 7 February 2018. Our thoughts are with his family and loved ones. Donate in his memory.

Peter had IPF. He explained why we need more research and education about the disease

Peter Phillips
Peter wants more funding for research into IPF, and for doctors to be more aware of the disease. Image: Heathcliff O'Malley

In 2014, I was diagnosed with IPF. It was an absolute catastrophe.

IPF, or idiopathic pulmonary fibrosis, is an incurable condition that causes progressive scarring of the lungs.

I've worked with shoes my whole life. When I was young, I worked in shoe factories. I was co-owner and company chairman of Jones the Bootmaker, a successful chain of shoe shops in the UK.

I was in good health

I was in relatively good health and looking forward to retirement. But I started having trouble with my breathing, so went to the doctors. I had a biopsy, but it didn't show anything. Eventually, I was referred to a specialist and finally got the correct diagnosis. It was a diagnosis that changed my life.

I've never smoked and lived a healthy lifestyle. Now, I struggle to walk up a flight of stairs. 

Before, I enjoyed travel. Now I'm wary of going on holiday because I feel too much of a burden. 

I imagined seeing my grandchildren grow up

I always imagined being able to see my grandchildren grow up, but now I'm aware that I probably won't be able to. 

I spend my life searching for the reason I've caught IPF. I think back to the shoe factories I worked in when I was younger and wonder if something there caused it. But there's no way of knowing, no one knows what causes IPF. 

We need more research

That's why we need more money to fund research into this disease. The only way we'll make progress is if we know more about the disease, what causes it, and how to treat it.

The team of people caring for me have been absolutely phenomenal. But doctors and nurses need to be educated about the disease, so people can get the correct diagnosis as soon as possible. 

It is so vital that this illness gets recognised. It's a desperate need.

We have to stop people going through what I've been through. It's not right. 


If you've been moved by Peter's story, help support our IPF research by donating today.

I want to donate


Comments

My husband was diagnosed this this awful disease in 2000.  Due to the excellent care of his Consultant and cocktail of drugs, he lived for 14 years.   He died in 2014 after contracting pneumonia.
My wonderful mum was diagnosed with this awful illness in 2010 shortly after her own mother had died at the age of 93. Mum had been caring for her for years and this should now have been the time when she began to enjoy her retirement with dad. Tragically, instead of that, the family had to watch hopelessly as she faded from the vibrant, active woman that she had always been to a shadow of herself confined to a life between bed, a chair lift and the sofa connected to oxygen at the highest flow rate. I hated to see the fear in her lovely eyes when she had been off the oxygen supply and was struggling for breath. The regular pumping sound of that oxygen machine supplying her air is a sound I will hear for the rest of my life. She passed away in 2013. I wanted to run the London Marathon this year to raise funds for the BLF but was not successful. Perhaps next year. Thank you for raising awareness of this terrible disease.
Sounds like a horrible condition, and obviously more should be done to prevent it, and to treat it if anyone ends up suffering from it anyway.
My mum passed away in January 2016 from UIP, a type of IPF.  Her diagnosis was painfully slow, from having a chest X-ray through her GP in May 2014 they suspected IPF but she didn't have a biopsy until November that year and confirmed diagnosis until the December. She was unable to take treatment because of another health complaint (she had liver cirrhosis). So she had scarring on both her liver and lungs. She never smoked and drank very little alcohol (2 glasses of wine at the weekend) I'd like to know if there's a connection with these two conditions.  Some advice I would like to offer for anyone with this condition:  - look into stair lifts early on, you may need one eventually and they can take a while to be installed. - enquire about wheelchairs so that you can leave the house.  - pulmonary rehab and breathing exercises were really beneficial, especially for managing the stairs. The breathing exercises were offered through a local hospice with a specialist physiotherapist. - try a handheld fan, this is called 'fan therapy' which when you have the fan held close to your face blowing over you mouth and nose it helps to slow your breathing down. - make contact with your local IPF specialist nurse, if there is one available! (We found one on the BLF website). - if you need oxygen at home, your electricity bill will be higher, the oxygen company offer a refund on your bills. The installation was offered through the specialist nurse. At first my mum was going to be assessed for this and the GP were going to do a blood gas (a blood test from the wrist) but this is not necessary in IPF, this is how they do oxygen assessments for people with COPD, you don't need to be assessed in the same way, if you feel you need oxygen then you probably do. A simple walking test while measuring your oxygen saturations from a probe on your finger is sufficient and not painful like the blood gas. This test will also show how quickly your recover from mild exercise (walking) and will tell the professional how much oxygen you will need and for how long (e.g. At first my mum just needed it when mobilising not at rest). -overall, the care she received was brilliant, but there were little support services available or made known to us. We found the BLF a great source in finding out what support there was.
I have just seen Peter's post. I too have I P F I was diagnosed 13 years ago, and at that time I asked for the long term prognosis and was told 3 - 5 years. Needless to say this shook my world completely as a mum of two children, my mind went into overdrive, but here I am still jogging on. Now have to have oxygen when moving around, and lawn mowing out of the question!. However, am just recovering from a nasty chest infection, which has put me back a few paces! I have also had two hip operations in the last three years, which was a setback as had to have operations done without a general anaesthetic ! Epidural was OK but I would have rather been asleep !!!!! Peter hang on in there, and keep clear of coughs and colds, they are a pain. I think like you, more funding is needed as Specialists seem to be in the dark with regard to up to the minute treatment. Be brave and think positive. I now have four grandchildren, and please God will see them grow up. Take care x Sylvia
My lovely mother, who also never smoked and was incredibly fit and healthy for most of her life was diagnosed with IPF in February 2016. I had no idea until I was told at the end of May 2016. She kept her symptoms well hidden from us for as long as she could. From the day I found out, I took her to her consultant/hospital appointments & it became clear she was deteriorating fast. She sadly, died on 10th January this year following a battle with Pneumonia from October 2016. She was 76 and is missed so very much.
I could not agree with you more about funding. My ex husband died recently 10 days after being diagnosed with this condition. People are ignorant about this when you tell them because they never hear of it, and it is a silent killer.
I am a 65 year old male and was diagnosed with IPF in 2014. The initial diagnosis was very simple, my GP, a woman in her 30's heard the rattle immediately. It was subsequently confirmed by biopsy and other tests. I live in the North of Scotland and have had the most superb support from the NHS. I think that in the first instance education of GPs might be considered (I know they have a huge workload) but also perhaps we should be a little more willing to go to the doctor ourselves. However, that being said there is no cure for IPF, although for some individuals a partial lung transplant might be possible. I am more than willing to speak further about my experiences should you wish. For me Pirfenidone and Nintedanib did not work so I guess there is not too much longer on this planet for myself.

Add new comment

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
17 October 2017