Fighting back against IPF

Graham had never heard of IPF before he was diagnosed.

I was diagnosed with IPF in October 2011, shortly after my retirement. However, I believe I've had IPF for longer than that. I had symptoms way before then.

I was getting breathless at work - but at the time I thought it might be because I’d put on weight after I quit smoking. I stopped smoking in 2005 as a Christmas present to my wife. She’s not easy to get gifts for, so I asked her what she wanted for Christmas and she said she wanted me to give up. On Christmas morning 2005 I had my last smoke. I packed everything up into a box: my pipe, tobacco, everything, and I wrote a note saying ‘this box contains a wish granted and a promise I will try very hard to keep’.

I haven’t smoked since. But my breathlessness continued and I began to think that there had to be more to it. I visited my GP, who listened to my chest and told me I had a chest infection. For the next few years I was pumped with antibiotics but to no avail.

Eventually, I was sent to Royal Hospital Derby and given a CT scan. The specialist who reviewed the scan said that if he hadn't known I was an ex-smoker, he would never have guessed, as there was little sign of the smoking related damage.

IPF

It was then that I was told I have IPF. And that was it. I'd never heard of IPF before. I was given no information. I avoided going on the internet to find out more but eventually did and what I found shocked me. The prognosis was not good and there was very little treatment available.

So... what to do? Sit back and wait for the bloke with the scythe or fight back in every way that I can, no matter how small and seemingly insignificant each tiny step appears to be? Fighting is good, it gives you focus. I was referred to pulmonary rehabilitation for six weeks.

Initially, I did the classes because they were part of the process of getting on the lung transplant list (I’d been told I was too overweight to be put on the list). However, the classes really helped me and I've been to the gym every week since. My consultant told me my BMI was too high so on my birthday, about two years ago, I joined a weight loss programme and lost three stone.

I can walk for 30 minutes at the gym now. Of course, I do it with full oxygen - but I can do it. Despite bringing my BMI down to a healthy level and remaining as fit as I can, I now can't get on the transplant list as I'm considered too old. But I won’t give up.

Making changes

I still try to do everything I did before. Obviously there are changes. If I need to go upstairs I’ll sit and think ‘what else do I need to do up there today’ because really, I can only climb up the stairs once. Everything takes longer now. If I want to mow the lawn, it’s going to take me over 4 hours. I need to stop and start a few times, but I’ll finish it.

The one thing that I really can’t ever do again is karate. I was two belts away from a black belt and now I know I will never achieve that. At the end of the day, you have to work within the parameters of what your body can do.

I do my exercises, I look after myself - and it helps. If I need to get around, but think it might be too difficult, I’ll use my electronic buggy. I can go around, see my mates, go on cruises and have a social life. Sometimes people stare at me and I know they’re thinking, ‘what’s he doing in a buggy - he’s fine’, but they can’t see my insides.

My GP didn’t know what to listen for, as not many people know about IPF. When I first volunteered to help out as a ‘study patient’ for medical students, none would ever get my diagnosis right. At the moment maybe one group out of five will recognise my symptoms and diagnose me correctly. That’s an improvement.

World IPF Week

That’s why this year I’m supporting the BLF during World IPF Week – to help raise awareness about this nasty disease. Knowledge is power, and we desperately need research to find out more about IPF. That way, we can help everyone affected by IPF. If there’s anything I can do to help people in my situation, then bring it on I say.

World IPF Week 2014 will take place 28 September - 5 October 2014. To make sure you don't miss a thing, we can drop you an email explaining how you can get involved - and don't forget to follow us on Twitter and Facebook for updates.

Comments

I was diagnosed with ipf in 2010. Am now on oxygen 24\7. I am 56 years old and find it very difficult to reconsil that I am probably going to die from this disease. I have been on pirfenadone since April. I don't feel any benefit from it although my lung function tests are fairly stable. I don't know if this is the result of the pills or not as my readings would have stayed constant for some time then suddenly went down. I have been accessed for a transplant but that doesn't seem too hopeful because of a number of other health complications. My biggest worry now is depression. I can't sleep and have panic attacks regularly. I would love to be like some I read about and be upbeat but that isn't going to happen. Times I wish the suffering would just end. I know I sound grumpy but that's how it is. I realise that this pity trip is doing me no good but I can't seem to get past it. I really wish things were different.
I was diagnosed as having Asthma, COPD and Pulmonary Fibrosis in 2008, I was quite ignorant to what they really meant and now 2014 my symptoms have got really worse. My consultant Mr Bari was busy with other patients so I saw another consultant called Mr Kedix (I hope I have spelled his name right?) here in Lancaster and he was great he has explained everything in great detail from my Clubbed nails to my Honeycombed lungs . I am having tests to see if I am fit enough for a Full lung transplant, (which the thought of it is quite scary ) I am on Oxygen when I go out which does help a lot but once that has run out ,were carrying round an empty tank for the rest of the time and as you that use them will know... there not light in weight. I did attend our local St John's Hospice on a COPD program for eight weeks ,which was great to be able to chat to organisations and others with similar lung conditions and now we meet up there every 3rd Friday of the month at the Oak Centre, Their Day Therapy Unit all the Staff are Fantastic, Supportive and very helpful. I also start going on my second Pulmonary Rehabilitation eight week session on the 9th October my last eight week session with them was in 2009. If you ever fancy joining a Rehabilitation course (which helps you to learn about your condition,talk to organisations that maybe able to help you , exercise and meet people like ourselves then ask your Doctor to refer you.) It's helped me and I'm sure it will help you and those that live around you. KEEP SMILING AND BE POSITIVE .
I was diagnosed in Jan 2013 with IPF, I also had never heard of it! I was lucky enough to have private medical thro work, so saw an excellent Consultant in Shrewsbury. He referred me to the University Hospital in Stoke where I was lucky enough to be prescribed pirfenidone,now nearly a year in and now medically retired. I am fighting this dreadful disease and trying to stay fit and posative. I have had a lot of good info via BLF, keep up the fight. Regards Pete
I too have IPF and was diagnosed in 2011 although I had symptoms for a year or two before that. Pulmonary rehab was a help to get me back to the gym but new little about the desease at the time.My info was found on the forums on IPF.although BLF started me on the right road to treatment or should I say lack of it. My consultant has told me that Lung transplant is for anyone but I would not want that at 74yrs so I asked to go on Pirfenidone a new drug licensed by NICE. I'm at the early stages of treatment after 12 mths I will have a c t scan to see if it has slowed the desease down. I only need O2 for moving around for now my condition is classed as moderate so I fall in the criteria that NICE give.
Graham do you/did you take any medication? Pirfinedone seems to work for some to stop or slow progress of this terrible disease....There are other meds also in development, speak to your specialist about them. Good luckxxx
I was diagnosed a year past August 2013 with Pulmonary Fibrosis but told nothing about it other than I had it ! Docters don't have a clue & I am still waiting to see a consultant ! Where I live in Carlisle the hospital is very poor & constantly in Special Measures because it is not up to scratch & has high death rate . I am scared to go into this hospital for any operation as when I have been in the medical care is very poor quality . I joined IPF support groups 3 weeks ago & I have learned more from them from other sufferers of IPF than from any DOCTERS & I now know what questions to ask & push for answers & treatment available .

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23 September 2014