Fighting IPF: how I survived with a lung transplant

A very inspirational Story John. I have PF (not IPF) and wont have the chance for new lungs. But I would not deny anyone to have that chance. I am very happy that you have a new lease of life. Every life is precious! Marianne

I lost my wonderful husband to this vile disease in may last year. He was always a strong healthy man. In November 2011 he started being out of breath and had a cough, within weeks he was diagnosed with ipf and we were just relieved he didn't have lung cancer as we had never heard of this but little did we know what a nasty illness it was. As his treatment progressed (which was very limited) we asked at least five times about a lung transplant but were just told it was past his time which we assumed meant he was too old (George was 66) he lived for just two and two half years. My family particularly my wonderful grandchildren have been raising money for the charity. The big problem is there are not enough donors. Please everyone out there join the donor register it would make such a difference. It's so wonderful to hear a positive story for a change, good luck to you and I hope you have many more happy years ahead.

lovely story and very inspirational..there's hope for us all.

this man is very brave, a positive attude is a must, with these illness, here is my story with thanks to ILFA I was diagnosed with IPF in late 2009, A illness I knew little about, My mother is 80 and still living She also has Lung Fibrosis with Mum we put it down to her lifestyle She was a smoker, she worked in a flour Mills and on the docks in Bristol where the factory was built with asbestos she had unhealthy lifestyle, crazy to think she very seldom needs oxygen even now. But I on the other hand enjoyed swimming in an hour I would properly cover near 100 lengths of a standard pool; I never smoked in my life. I ran the ladies marathon every year for ten years, done aerobics played badminton, always doing something, though I would admit I did like my food and always carried a little extra weight. In July 2009, I was swimming 3 or 4 times a week before or after my work, I would easy do 50 lengths of a 33mtr pool, I worked in a very busy medical centre I was in charge of the general running of the practice a Job that I loved. From July I started getting breathless a little ....I put this down the chlorine in the water changing pools as I also started to cough a lot, I went on holidays later in July 2009 and found I could hardly walk and feeling terrible, when I came home I got Antibiotics from the Doctors I worked for, as I was struggling to get up the stairs at home. August seen another Antibiotic cough getting worse, September the same, but I carried on in November I was still working in the surgery, after the surgery closed the doctor came out to me and said enough of this gave me an examination and told me to go to A&E I was horrified, and though I don't fancy spending 4 or 5 hours there...I went off though I'll in a right huff. Well I was kept for almost 7 weeks, had a lung biopsy which confirmed IPF. I was transferred from Tallaght hospital to the Mater under proff [Mod - name removed for privacy] for potential Lung Transplant. I have not worked since.... I was in and out of hospital several times with chest infections, One day feeling poorly [Mod - name removed for privacy] came into the ward there were 4 of us she handed us all an exercise sheet, and told us we are all capable of doing some light exercise to be honest I thought she was totally mad, we are all sick people I thought, under protest I started following her instructions. Sorry [Mod - name removed for privacy] for thinking you were nuts but you were so right, you have to keep moving even if your breathless, I found turning oxygen up one notch done the trick. When you are doing a little more than normal. for the first year and half I was quite poorly and [Mod - name removed for privacy] thought it might be beneficial if I joined a Pulmonary Rehab Class, which I did at first it was hard really hard I had to walk on the treadmill set at 2nd setting, as well as some light Exercises, well I kept it up twice a week and felt I was getting stronger and stronger then the treadmill was set on 7 and sometimes 8 which is almost jogging, just building up slowly at the beginning, Soon I was on the cross trainer, rowing machine the physio staff were amazed, I told them if I get a transplant no when I get the transplant I will either swim or row in the transplant Olympics this was a joke at first but become more apparent that this may actually happen.. Keep you posted on that one....But the staff in Tallaght sometimes had to tell me to slow down, although I knew I was pushing myself my lips would be turning Blue. I am nothing special you just have to push yourself and believe you can do it at the end you feel you have achieved another goal, I was feeling better, sleeping better and also the feeling of safe exercising with others. now 4 and half years later, I have been in the best condition since before I was diagnosed from being on oxygen 24/7 I have hardly been on oxygen at all in the last six months, Although I am just getting over a chest infection now I consider myself doing really well and keeping out of the hospital bed for the past 17 months I put this down to: - 3 things 1 .staying positive 2. Working at keeping myself in a reasonable fit condition 3. And the correct Balance of the Medication Pirifidone has worked better than I had anticipated from wanting a transplant ASAP back in 2009 -2013 now I am happy as I am….. as long as I am feeling this way I am in no hurry, I believe my time will come and I also believe I would not get any better treatment anywhere else but under Proff [Mod - name removed for privacy] and the team at the Mater hospital for I have total faith in them. And just last sept I was actually swimming in the Med in Spain, I took the oxygen to Spain but never used it .........only on the Plane going over and back, I attend the support group run by ILFA every month, and hope I make a good contribution to helping others with the illness, I Cannot stress enough EXCERCISE is key, if you can't go out for a walk because the wind affects you, go to a shopping centre in the morning where there are less people walk around it, go up and down the stairs at home, or just moving regular when your sat watching the TV keep moving you will feel the benefit. I find the support group great we share tips and advice, example Disability pass for the car, sometimes I need it, and not just because I am hopeless at reversing red faced it gives you that little extra space to get oxygen in and out of the car. Or if you have heavy bags. There is another important matter I would like to share ...you may have a life policy, on that policy you may have a critical illness policy within it, please Check it, I just want to touch on what happened to me I had such a policy, and claimed what I thought was a legitimate case, when I claimed they told me IPF was not a critical illness, they would pay for COPD and emphysema But IPF was not listed as a critical illness....Well they had one big fight because this Lady does not give up, even though a solicitor told me I was properly wasting my time I proved to them it was Critical..The ...Response was if the consultant said I would die within 12months they would pay , Not excepting that they said then that when I am on the actual transplant list I would get half the money and half if I survived .....I felt they were just stalling me ..as far as I was concerned I had a critical Illness policy and I had a Critical Illness I was prepared to fight so We proved that the definitions of both COPD and emphysema were both written wrong within the policy, so after nearly 4 years I took it to the financial Ombudsman…. I won my case. Another member of the support group is going through exactly the same at the moment but hopefully I gave him some good advice, I have no doubt they will have to PAY UP. Living with IPF is not easy, but please don't give up, keep fighting, Pirifedone is a huge breakthrough and the medical profession will no doubt come up with something hopefully sooner rather than later.

I'm waiting for a lung transplant! Its very stressful waiting for that phone call! I had the call Saturday, but then after being in hospital a few hours, I was not considered suitable at the end! It felt awful, I was so bereft! But, one must be positive and get over it! Its nice to hear about someone who has had a transplant and is fit.

very inspirational story. My husband was diagnosed in Nov 2011 by lung biopsy. Stanford Hosp, turned us away, too old (65 yrs & complicated medical history. We went to UCLA CA the road was rocky with many hills & valleys; he was very ill unable to walk & barely able to talk. In Jan 28 2015 he was listed & received the gift of breath on Feb 18th 2015. We are not out of the woods yet but each day is improvement. I know he will not suffocate from this awful disease. He is strong & look forward to the future. You can not give up & keep calling & asking for answer, here in the US the guild lines for transplant were recently relaxed & made available organs that might not of been accepted by The Team because the post transplant medicine cocktail can correct conditions that previous had not treatment. God bless you all & our Donor. We are forever greatful for the chance,

Very uplifting inspiring story . Firstly the 9 years surviving with ipf and your age at transplant well done you hope you have many more years

I think this man is very lucky to have had a transplant.When i asked a out transplant at the age of 60 i was told i was too old How do they make that decision I have PF and RA iis this why i wasnt offered lung transplant? I would dearly love to lead a healthier life and be able to be a healthy wife,mother and grandmother.I am on 4 litres of oxyge for 24 hours per day.Saturation levels drop with any exertion Good luck to this patient i hope he has many more years of good life P Prentice

I found this story relevant and helpful to me. Thank you for sharing your story.

It's great to hear a positive story. I lost my mum at age 62 to IPF and my nan previously too. My mums diagnosis was made 14 years before we lost her and yet still nothing could be done. In my experience a lot depends on who you see and that shouldn't be the case. There needs to be more medical knowledge of this disease. There are too many we don't know shrugs of the shoulders and people deserve better. I'm glad you persisted but if you hasn't asked what would have happened. I don't think you should have to ask I think it should be offered. I've learnt more from the BLF blogs than I did listening to 14 years of doctors.

Two years ago this Thursday marks the death of my husband Chris. He died at 61yrs of age from pulmonary fibrosis. He also had rheumatoid arthritis, the symptoms of which masked the progressive deteriorating condition of the lungs. The consultants didn't at any point give us the understanding that Chris would die within a 5 year period. When he did it was a massive shock, no one was prepared. Having read John's story I am so pleased that he has been given more years to enjoy what life has to offer. My advice would be to ask all the questions about what can be done to help the condition. We didn't because we didn't think it was terminal - no one told us that a lung transplant was an option. Stay positive and don't take no for an answer about further treatment. If I'd known about the possibility of a lung transplant it would have given us something else to look into even if it wasn't suitable for Chris. At least we would have known.

Amazing story very inspiring.

It is wonderful to read this brave man's story and I send best wishes to all sufferers that they be blessed with positivity and strength to fight. My father died exactly 10 years ago from this horrible disease. I know that having this disease is akin to suffocating because I watched my dad decline. No one seemed to have experience of treating it and care was patchy because of lack of experience amongst nursing staff. Thankfully there have been huge strides since then. BLF believes there is as many undiagnosed as diagnosed cases. Research is vital so that: the illness can be diagnosed earlier (there is some evidence of genetic link) and arrested in its tracks once diagnosed (medical treatment); awareness is raised amongst GPs to facilitate early diagnosis and nursing staff in hospital can be trained in the right care for sufferers/advise family on caring for their relative. In the meantime, keep fundraising for research - a cure needs to be found.

They are all good indicators of how IPF is affecting our lives , l've also had IPF for about 8 years and my answer is to keep active and exercise . We are not all going to get a transplant, but must stay positive in life.