People's Stories

This section was first developed to give people the chance to tell the world their story or to write a tribute to a missed loved one. Things have changed a little since we first developed this site - we think Facebook and the number of pulmonary fibrosis groups that are on provide a much opportunity for people to tell their story on a day to day basis.  Past contributors stories are featured below:

The Jinks Family

We are an average family much the same as many others – none of us have any claim to fame, none of us have strayed from the values and morals our parents taught us and like you we have often seen from a distance via the media many unknown families encounter some tragic twists of fate resulting in them suffering from rare medical conditions and like yourselves we thanked our lucky starts it was not us. 

We met Pulmonary fibrosis (PF) head on in 2003 when the first family member presented with breathing difficulties, Sue was the youngest of the 5 Jinks’ brothers and sisters she was fun loving, a little crazy, an emotional softy, particularly at all movies that involved animals and to some extent always remained the baby of the family. At 44 years of age Sue was suddenly and un-expectantly faced with the greatest challenge of her life - Pulmonary Fibrosis which seemed to appear overnight. After a few weeks Sue was taken in to hospital and despite intensive medical care she could not overcome her breathing difficulties to ease her distress the medics decided she needed to rest so sedated and ventilated her. Sadly Sue did not recover and slowly drifted into deep sleep from which she did not wake.

Although deeply saddened by Sue’s death we considered it to be a cruel twist of fate that was a secondary condition to her chronic arthritis. We did not know much about PF but what we did find out led us to believe it was just that. The genetic factor was never considered or even presented to us as a possibility. Just like many other families who experience an untimely death we picked ourselves up and became that little bit closer, but the experience did cause us to reflect on our lives and many of us made a silent promise to ourselves to value our own life and future that little bit more. Fate had given us a glimpse of life’s uncertainty.
 

It was January 2007 when we next crossed paths with PF Chris – the second youngest of the Jinks siblings was known for her love of the exotic she was vibrant in her personality, taste of clothes and music and like Sue she too had a caring and emotional side. Chris was known for her smart appearance and healthy lifestyle she was a font of knowledge on all sorts of things so when she suddenly noticed that she was breathless on her morning walks with her dog Barney she wasted no time in seeking medical advice.
 
Chris’s diagnosis of PF came as a shock and at this point we all questioned the hereditary factor and as a precaution the other 3 siblings were tested too, Clive was found to be affected. Chris researched PFand her findings proved to be devastating a lot of the information came from abroad and offered her little hope and no comfort upon reading this she made her children and husband promise not to look. Despite early diagnosis the medical intervention was limited and not reassuring. Again PF acted swiftly and in February 2008 aged 53 years Chris was overcome and died suddenly whilst sleeping at home, it was the coroner who informed us that Chris had Idiopathic Pulmonary Fibrosis (IPF) and given the family history it was likely that as a family the blood line would be pre disposed to IPF and thus began our family mission.


Last year we lost another member of our family to Pulmonary Fibrosis Clive. Clive was a fantastic man, fully of energy, optimistic and a big inspiration for this site. He is very much missed by all his family especially his sweetheart Sandra, beloved daughters Sarah and Dawn. Clive will drive us on further in our efforts.

Michael Webb

Mike has suffered from Rheumatoid Arthritis for over 20 years but had kept coping well. At the end of August 2008 he developed a cough and after antibiotics didn't work, was sent for an Xray. He was then told he needed a CT scan and had that at the beginning of November. It was then we were told that he had Interstitial Lung Disease (Pulmonary Fibrosis) his right lung was compromised by over 2/3rds and his left over 1/3rd. He was started on Prednisolone which was quickly increased to 30 mg daily. Then he was put on O2 2ltres 16 hrs daily. In March he was admitted into The Brompton Hospital for extensive tests, he was also to have a bronchoscopy, BAL and biopsy which they decided to delay till April. We later got a phone call to say they had decided against those three procedures due to his frail health condition. At the follow-up appointment he was put on O2 2ltrs 24/7 and is to start a new medication (Mycophenolate Mofetil) next week. He will have to have weekly blood tests. We are having to decrease the Prednisolone over 3 months till it is down to 10 mg daily. 

All in all it has been a rollercoaster experience that we could well have done without :( He is permanently tired, out of breath with any exertion, and very weak :( We feel totally without control, knowing that this disease has no cure and only one outcome. We did find the video link that is now on this site very helpful and the support groups are a safety valve for me at least. I'm his main carer, although we have just been given personal care support which has helped a lot. That's it so far! I guess we now see how many side effects we get with the new meds!!

"This is a sad update on our story of Mikes battle with PF. He is now in his last weeks and having Palliative treatment under Hospice Care ( I am nursing him at home with their support ) The deterioration was rapid.....within 5 weeks going from partly mobile to wheelchair bound to bed ridden :( We have had the most marvellous support from Phyllis Tuckwell Hospice care...our GP and the District Nurses.....but Oh :( how hard this is :( I am losing my best friend and dearest husband and this disease is so awful :( There seems so little the Medical Profession can do...despite their best efforts, and so little known of the causes and best treatment. Mike's case was put down to his Rheumatoid Arthritis , but I dont think anyone knows for sure. Thinking of all who are battling this insidious disease. Kath"

Richard H-Dasent

As a sufferer aged 67 years, since diagnosed in April 2007 after a collapse, I have been amazed at the apparent rarity of this, albeit increasing, malady and the fact that doctors seem, so far, to know little of the real causes or how to handle it. I also notice that, in the UK at least, there seems little personal help for us sufferers so I am delighted to see this new website which can only help sufferers and carers alike.

I had been a very heavy smoker and, surely, they did me no good at all other than being my crutch during a wonderful, but very tough, career in the oil industry. Non smoker for over two years now, of course! Paradoxically, however, and scant succour, doctors assure me that, whilst they would not have helped, cigarettes have little to do with causing Idiopathic Pulmonary Fibrosis - the real meaning of “Idiopathic” in this case being an unknown cause. It just seems that, for whatever reason, one’s own system suddenly turns on itself and attacks the lungs. Thereafter, one is seemingly “doomed” to a life of steroids, alternatives and anti-biotics with the message, “it will not get better, only worse”! On top of this, many of these IPF sites give a prognosis of 3 to 5 years from diagnosis. Well, I, for one, intend to see that I am at the very top of that average and have a minimum of 10 years in mind. So far the steroids have made me put on too much weight, this coupled with no smoking since April, 2007, and now running at well over 15 stone from a normal weight for years of around 12 stone 10 lbs. This increase is now the weight of our Granddaughter and makes me even more breathless with any sort of effort, even tying shoe laces. However, my lungs have stayed roughly the same in the last year.

I have tried to think how it came on, or whether I had any signs. We moved to Cornwall, from Guildford, in 1996 and stayed there for 9 years before moving back to be nearer family in 2005. Thank God we did. I suppose I did notice I was becoming more and more breathless in this period but put it down to the old fags, despite all the pleadings from Sheila and family. In the end, something got me at Easter 2007 and I thought I was a goner for a few weeks. I am still here!

MOST IMPORTANT FOR SUFFERERS, I AM NOW OVER TWO YEARS INTO THIS AND, DESPITE SEVERAL FRUSTRATIONS, AM WELL AND TRULY STILL CRACKING ON SO TRY TO BE POSITIVE AS OFTEN AS YOU CAN. POSITIVITY IS THE KEY, I THINK. NOT ALWAYS POSSIBLE, I KNOW THAT TOO WELL, BUT THE EFFORT IS WORTHWHILE.

For more detail see www.dickydasent.co.uk

Pat Moorhead

I have just been diagnosed in January 2009 with Pulmonary Fibrosis. At the moment I am mobile but very breathless going up small hills, (I haven't tried big ones). I had a heart attack eleven years ago, and, when I initially became breathless 2 years past in May, I was sent to cardiology, who then referred me for an angiogram to see where the blockage had occurred. The cardiologist then told me he could find nothing wrong with the original stent I had fitted and so would recommend me for bypass. A couple of months later, I received a letter from the cardiologist saying he needed to do another angiogram to see if the pressure flow through the stent was ok, which ultimately to be ok again, and then I was referred for a bypass. About 2 month later I went to see the cardio-thoracic surgeon and it was there I told him that I didn't think it was my heart, but a lung infection and he agreed, saying he would delay the operation till further clearing up of the infection took place.

I went to my GP with the infection and was given a course of antibiotics, and nearly every 2 weeks thereafter until I went to my GP in September and asked him why I was getting them every 2 weeks, whereby he referred me to a chest specialist who sent me for a lung function test on 2 different occasions, then for a CT scan. The upshot of that was the diagnosis of fibrosis in the lung, and told there is no cure, just an old man's disease, and why did I get it. Having looked on the internet for the root causes of it, it seems that people suffering from reflux are prime candidates in older ages. I am sorry it is a bit long winded, but I am letting others know how symptoms creep up and doctors don’t really recognise it, and now I've been told that the pain in my knees is arthritis caused by the fibrosis. I will fight it by walking as much as I can but I know this will be a lost cause eventually.

Alec Palmer

My name is Alec Palmer and I am 74 years of age and suffering with Pulmonary Fibrosis. I was diagnosed about 6 years ago and remained quite stable until a year ago. It has since deteriorated quite quickly and a recent CT scan showed extensive scarring to both lungs. I have tried various treatments including steroids, steroid infusions, mycophenolate and azathioprine. Unfortunately they all made me feel worse. Now I am on oxygen 18hrs daily,15mg of prednisolone daily and oral morphine liquid 4mls 4 times a day for pain. I am totally dependant on my wife for dressing, showering etc and I do get quite depressed about it as I was always very fit and active before this set in. I am trying to have a positive outlook but it is very hard when the slightest exertion leaves me struggling for breath. Has anyone got any ideas on anything that may help with my breathing? I would very much appreciate any suggestions or to hear from anybody in a similar situation to me, YOURS HOPEFULLY, ALEC PALMER

It is with regret that I have to inform you that Alec passed away on Feb. "2nd He had gone downhill very rapidly over the last few weeks he was not eating and developed yet another chest infection.He also got thrush in his mouth Despite the doctors best efforts Alec could not fight it any more.I miss him dreadfully but at least he is not struggling with this cruel illness any longer.I would be happy to hear from anyone else who is caring for someone with pulmonary fibrosis or anyone who has the illness if I can be of any help. palmer48@talktalk.net

Pauline & John Gilligan

My husband was diagnosed with Pulmonary Fibrosis eighteen months ago. He is 66 and also suffers with Chrohn's disease. He has been on steroids on and off since diagnosis but his consultant has now tapered him off them completely. He still has to take the once-a-week bone tablet. He gets very tired at the moment due to being off the steroids and his cough is starting to come back. He has now been asked to take part in a clinical trial with the hospital's supervision for the anti-biotic Septrim, which some people find help with their fibrosis. The trial will last nearly twelve months and some people will be given a placebo so we won't know what tablet he has taken until the trial is over. He will be monitored and have constant contact with a specialist nurse. We just don't know what to do for the best. The doctors seem to think he has nothing to lose so might as well 'go for it'. Have any other people been on these trials? We really would appreciate any comments (email: paulineobg@hotmail.com). Thank you.

Edward Kay

Hi my father eddy was diagnosed with pulmonary fibrosis in April this year. At the moment he is on oxygen at home and seems to be stable. He keeps been told he will only get worse and while this is true why do docs think they have to drum it into their patients!! My father used to work at a factory that made cardboard, which I think has a lot to do with his condition! He has never smoked not that I think that makes a difference. I found this website and is has been great to read other stories. Good luck to all on here and chin up xxx Nicola

Angie Timms

Hi I am Angie aged 56 I have had Crohns' disease for years. In January of this year I started a dry cough.....very persistent. My heart rate was also very high and a young medic noticed I had club fingers and I wasn't breathing properly. Unfortunately for me I was thought to be hyperthyroid having been treated with Thyroxine for the past 25 yrs. I was 'over-replaced' but this masked the real problem. I was in the meantime sent for Gastroscopy, Ultrasound scan on my Thyroid and even to see a Psychiatrist as when they took me off Thyroxine I went a bit loopy. Finally I was sent for chest X-ray which came back with the diagnosis ILD PV and infection in both lungs. I was treated with heavy dose of Augmentin which did help my cough. So back on Thyroxine now. I have just had CT scan and it shows I have Pulmonary fibrosis and scarring in both lungs. There is a whole moderate section which shows up 'grey' which is inflammation I was told. The biggest clue I had to the cause of mine was we went away for the bank holiday weekend in May and I improved slightly. When I returned home I was immediately coughing and we realised that my Bird an African Grey Parrot was possibly not doing me any good. Frodo has been found a new home! However my PF tests show I am now only absorbing 45% O2 I have been prescribed Prednisolone 30 mg daily to reduce each month, omerprazole and calcichews as well as the weekly tablet......I only collected all of this today. Like everyone on here I have read the articles which spell out doom and gloom. I have accepted my own mortality but have little or no help from the GP or other health professionals who I need to tell me? how serious? prognosis? am I fit to work? should I seek to get my pension early? etc etc No one seems to want to tell you to 'get things in order' although I have done so even marrying my partner of the last 6 years this Friday as well as making my will. In 2001 I nursed my husband who had a brain tumour and he was told from the outset he was terminal and it was inoperable. This allowed us time to plan all that was necessary and we had a very warm and peaceful time together. So if anyone can help me with any advice on how to help myself with this please contact me at angie_timms@hotmail.com My thoughts and best wishes are with you all at this time x.

Nanaeye

In February (2009) my stepdad Pat age 68 developed a cough within a month he was in hospital on oxygen, after about 3 weeks or so he was discharged and since has remained on oxygen and recurring admissions to hospital where he is at the moment. There doesn't seem to be anything we as a family can do but be there and help him any way we can, hopefully he will get home but what shape he is gonna be in we don't know and can my mother, though reasonably fit for her age (81 today) do anything for him without going under herself? Advice would be welcome!! Nanaeye: i.sullivan@hotmail.co.uk

Brian Warren

My name is Brian Warren, I’m 61 years old ex plumbing and heating engineer, who until six years ago owned and ran a very successful business. I thought my life had ended when I was informed of my PF and to be told also my life expectancy was a year maybe two, not what you want to hear. I then sold the business quickly and cheaply, and started to put my house in order to make things easier for my wife Caroline. However I am still around and fighting, the drugs I am taking must be doing some good, breathing not good but what can I expect. What I would say to any person diagnosed with PF is think positive give your Doctor/Consultant hell and be prepared to try something different. At the end of the day think about your Family, Wife/Husband these are the people that are going through it also. I wish you all well. Brian

As I have already written to a while back, you maybe don’t require an ongoing report, but I thought you might wish to know how my life is panning out. I recently had a mild heart attack and was taken to Blackpool Hospital from here in Morecambe, and this marvellous Dr decided to place stents in the blocked arteries, of which my Lancaster consultant had refused to carry out for five years, as he said that my lungs and heart were not strong enough. The change is fantastic, no Angina, one problem helped now we need to make my lungs work a little bit better. As I mentioned in my last letter do not give up keep fighting. My thoughts and best wishes go out to all who have lost loved ones. Brian

Fred Jones

I had problems about being breathless and coughing, (since 1994). I had a scan then and was diagnosed as having emphysema, which later was defined as COPD. I then had problems with my arteries narrowing and ended up being a sort of tennis ball between the cardiologist and chest medicine tennis players. The cardiologists were extremely good and carried out lots of angiograms and angioplasties including being drilled with Rotablation. When batted to the chest medicine team, I underwent the blow-in-here and breath out here routines and had varying results from the breathing tests. The hospitalisation periods consisted of five days in, (during lung infections), being dosed with antibiotics and later, steroids. No scans until the cardiology department arranged for one, which said that the results showed changes consistent with emphysema. The professor, (now in charge of the Chest Medicine section), even discharged me as not having lung problems - even after looking at the scan results!

In July 2008 an angioplasty could not be carried out due to my coughing and breathing problems and the cardiologist wrote to the chest medicine professor and asked for some tests to be carried out on the coughing and breathing problems. Nothing transpired until I managed to get an appointment in September, with a chest medicine registrar, (when my breathing and coughing, was in a bad state). The registrar said that she suspected that I had pulmonary fibrosis and wanted me to have a blood gas analysis and a high definition scan. I later saw a chest medicine consultant who confirmed that the analysis and scan showed that I had pulmonary fibrosis and it was arranged that I was to be put on oxygen for a 23/24 basis. The consultant also put me on medication which eventually overcame most of my coughing problems. I now have an oxygen concentrator fitted in my home. When I need to go out, (surgery and hospital outpatients and occasionally a supermarket and, twice to a restaurant, - otherwise I don't go out very often), I use the PD430 portable cylinders, which are a bit of a bind because they don't last that long. I have just requested a Liquid Oxygen Container, because I am starting a Respiration Rehabilitation course next week and this container lasts a lot longer.

I am happier that at long last my problem has been diagnosed and confirmed. The oxygen treatment seems to be aiding my artery problems too! I desperately need to build up an exercise plan suitable for my 74 year old torso!

Malcolm Weallans

I was diagnosed with Pulmonary Fibrosis 3 years ago. I received the initial diagnosis following one year of cardiology tests as I was breathless when exercising. Initial tests showed that there was no obvious explanation of the condition. I was also told that there is evidence of COPD/emphysema which is probably the result of smoking for many years. Early tests included the standard spirometry tests, an ECG and a chest X-ray all of which confirmed that the major cause of the problems was Pulmonary Fibrosis. My specialist decided that I was not yet bad enough to need O2 at home, and she prefers to delay the use of medications - including steroids until there is evidence of decline.

Over the last 3 years my spirometry results have shown very small levels of degradation, although recently my ability to diffuse Oxygen is declining. About 1 year ago I had a heart incident and was started on a course of cardiac rehab exercises. Since then my ability to cope with the decreased O2 has improved and I can walk up hills, even to the extent of a walking holiday in the Alps this year. I now fervently believe that it is very important that all PF sufferers should do controlled exercise programs aimed at making sure that all the major muscles are kept as fit as possible. My wife was initially very concerned that I should not do the exercise but having seen the evidence for herself has been forced to change her views

Margaret Zier

I was diagnosed five years ago with idiopathic pulmonary fibrosis and until last year remained fairly stable. When I looked into the reason why there is no real effective treatment or cure, it became obvious that lung disease was seriously neglected for research funding and pf was at the bottom of the pile. So it does not matter how early the disease is diagnosed patients just have to wait until it overwhelms them. I do not think this is acceptable and I feel we sufferers must somehow get together to become a focus and pressure group to get more funding. Respiratory disease has faired very badly compared with the other major killer, such as cancer and heart disease and people are living with very little hope of survival. My condition has taken a turn for the worse now. I have tried all the conventional medication but it seems to have little effect. I did try thalidomide recently as some small studies seem promising. However, I could not tolerate this drug.

I feel some medical professionals show a measure of complacency. Chest Consultants should be at the forefront of the fight for more research. In my town, the Consultants just dispense the usual platitudes and operate the status quo. Am I expecting too much? We all need to pull together on this and drive forward much needed initiatives for research. Perhaps someone has some ideas on the best way to do this. margaret.zier@googlemail.com

John Bedford

My husband, John Bedford, was diagnosed with pulmonary fibrosis September 2008, after a series of chest infections and having been treated for COPD for the past 2 years. He started on steroids and anti immune suppressants in Sept. 2008 and his breathing seemed a bit better. However, he developed pneumonia in Nov. 2008 and spent a few days in hospital. Dec. and Jan. he seemed much better, but in Feb. 2009 he deteriorated rapidly and his oxygen levels were so low that the hospital admitted him for 9 days following a day appointment he was attending. 

He was on oxygen for the 9 days and then they let him come home. He was on oxygen at home 24 hours/day, but after 3 days at home, he was rushed back into hospital, not being able to breathe. They stabilized him once more but the next morning they sent for me and my children. He could not breathe on 100% oxygen and he died in my arms, age 71 on 11 March 2009. I feel that the medical profession did not prepare us for how swiftly he would deteriorate. I had no idea that death was imminent. It is an insidious, frightening illness and I think that more research should be done into it.

Connie Stretton

Hi my mum had PF, she had it for 5 years. She ended up on oxygen 24/7 on the 14th Feb this year but kept getting pneumonia, she seemed to get better in April, and then she came to stay with me for a while so I could look after her. In the middle of august she said she kept getting cramp like pains in her calf. After a few days of massaging it was no better so I phoned our GP who sent her to hospital with a suspected blood clot! After 4 days in hospital she got worse as we found out the clot had moved to had lung and she took her last breath on the 29th of Aug 09 . I feel let down by the care she had at home this past few year as she was unable to walk (even having a wash was too much) so why didn’t she get any help or exercise if she was prone to getting clots with her being immobilized? I could have helped if I had known. I miss her so much but I know she’s not struggling for breath any more and she’s at peace

Linda Jackson

Please help. My mum has Pulmonary Fibrosis and the doctors have just said that there is nothing further they can do. I have been doing some research on the internet and there is a website called Biomediclabs.com who can give alternative medicines to repair scar tissue on the lungs. The two drugs they are saying is Serrapeptase and Nattokinase and Neprinol. Could you please let me know if you have tried any of these and if so you have tried them with their current medication? Please help. Sharron, sharronpearson@live.co.uk

Joyce Gray

I was born and bred in south west Scotland but have resided in South Africa for the last 44 years. In May 2004 while presenting a training course, I noticed that I had a little cough-just a slight clearing of the throat, but frequent. Then a friend noticed that I was breathless after climbing a flight of stairs. I became sick with 'flu the following week and after 2 cortisone injections, 3 lots of antibiotics and confinement to the house for a month, my GP admitted that he should have hospitalised me as I had pneumonia. After an x-ray and CT scan, I was told that I have Idiopathic Pulmonary Fibrosis, a degree of emphysema and that honeycombing is evident in both lungs. I see a pulmonary specialist every year and this year-2009-my lung function test showed that 36% only of the alveoli are capable of gas exchange. 

For 7 years, I taught in a classroom in an old convent building where there were bats in the ceiling. Chlorine powder eventually got rid of them and they flew out in their hundreds! I feel this has something to do with my condition though the specialist denies this. Also, although I gave up smoking 15 years ago and although it's reckoned that smoking does not cause IPF, it certainly didn't help. I am on no treatment whatsoever apart from a 'flu injection each year and a pneumococcus injection every 5 years. My breathlessness is getting worse but I try to stay positive and active to a degree. It's difficult because I don't know of anyone else around here who suffers from this disease, so good to find a site like this where one can speak to folk in a similar position. thegrays@lantic.net

Frederick Mackenzie

Hi, My Dad was diagnosed with IPF about two years ago. For the first year or so he seemed quite stable, then, last Christmas he had pneumonia, and has struggled ever since. We, as a family went to see his consultant two weeks ago, he told us that there wasn't really anything that could be done, as Dad wasn't responding to the steroids and other drug treatments. It was suggested that he should reduce the dosage of steroids, and ever since he has also had a feeling of nausea, and been even more unwell. Like another person who has posted a story on this site, I have seen a natural enzyme treatment on an American website, and wonder if anyone has heard of this improving the condition, if only slightly. Gary garymackenzie@ntlworld.com

Bob Miller

I was diagnosed with IPF in 2007 - and that was by chance - I had been suffering with chest pains for a few days which in the back of my mind I was convinced was purely bad indigestion, but with the stories one hears related to heart attacks, one quiet Wednesday night at about 10pm I thought I would present myself to the local A&E. They took the matter quite urgently, I went through the usual tests and to my surprise they were going to keep in overnight for more tests. I thought it rather odd that I was taken twice to the x-ray department for chest x-ray, then a young doctor while checking my breathing said there was a crackling sound from my lungs. 

After being discharged (and sometime later) I received a letter to attend the local Hospital for a CT scan. Thinking no more about it I duly attended, as a result I was referred to a Consultant who in a rather blase' manner told me I had Scaring on the Lungs - Pulmonary Fibrosis. I was still non the wiser when I left, so I had to look it up on the internet and as you can imagine was duly gob smacked! Every report I read - and they were all from prominent people (not drug companies trying to frighten you to buy drugs) gave a life expectancy of 3 - 5 years! After a couple of more visits to the original consultant my family were urging me to get a second opinion so I asked if I could perhaps be referred to the Royal Brompton Hospital in Fulham who are apparently the Countries leading experts in respiratory complaints. I confess that the Brompton were very good, I was admitted quite quickly and underwent several tests, and at no time did any of the Consultants or Doctors want to discuss a prognosis. In answer to my question - "Will I have to go on Oxygen one day?" The answer was - "Probably - yes." - Why don't they want to talk about it? I have learnt more from these contact forums than I have from any consultant. 

I am still on the usual treatments - 3 monthly lung function tests / x-ray etc. I'm on 10mg of prendisolone and 1.5g of mycophenolate and was advised to get n-aceteline cystine from any health shop - £35 per month, why is this not on the NHS when every report I read on the subject advises this drug? I continue with being breathless at the slightest exertion, but after reading a few of the members comments have been determined to do some exercise. I play Green Bowls and also do Tai-Chi with a view to at least doing some exercise. I was getting like some other members who commented that they didn't want to do any exercise as it only caused them to go into breathlessness or a coughing fit. Which is generally the norm, so what causes this damned condition? I am presently 66, have NEVER smoked a cigarette in my life and always worked in a clean, dust free environment. Two years before diagnosis I had attended my GP on several occasions complaining of a persistent cough, he put it down to my blood pressure tablets and changed them a few times, the cough continued. Not once did he put a stethoscope to my chest! The local Chemist rubbed his hands every time he saw me as I must have gone through his entire cough remedy stock! I did notice too that I was getting out of breath quickly, simple things like bending over to tie shoe laces - I put it down to not being too fit (sitting in a car for most of my working day !) Well I'm now into my second year of my 3 - 5, I think it will be longer but who's to say, I have even taken the plunge and got myself married to the lady I love and who knows the score - let's hope we have a good few years of happiness. Do respond if you want to - bobmiller416a@aol.com

Joseph Burton

My husband Joe was a very fit ex soldier and was diagnosed with possible pulmonary fibrosis in 2005 after going through the usual tests including xrays, CT scan, and lung biopsy. He started prednisolone, Omneprazole & Fosamax in February 2007. He then had Azathiaprine which did not agree with him so was given Acetylcysteine. 

Pulmonary fibrosis was confirmed in October 2007 & he was told this would not improve. We managed a holiday in Greece in 2008 but somehow he picked up an infection and was admitted to hospital in November 2008 and after examination was told he had laryngitis! He tried to keep fit by walking & gardening but was assessed for oxygen in May 2009. He was on cyclophosphamide at this point as the consultant asked if he would like to try this. As a result he could now lie down to sleep! Aren’t these oxygen concentrators wonderful. I wish he had access to oxygen before as the constant effort to breathe damaged his heart. He died at home on 1 July 2009. Incidentally, I think Joe’s father had pulmonary fibrosis although it was not recognised at the time. I think your website is sorely needed as there is very little in the way of help for desperate people and most of the web content is enough to frighten anyone. Keep it up. I think that gradually doctors are beginning to recognise this disease for what it is.

 

David Fassnidge

David worked in his early career years in a paper factory which was based locally to where he grew up. Later in his career he moved to an engineer firm where he cut sheets of metal at a metal fabrication firm. 

In the 80's my dad was diagnosed with diabetes, at that time, I remember his world had ended because he could not have jam or sugar anymore! Dad over came this and managed to control his diabetes from diet alone. In the 90's he had to start using medication to control his diabetes which was another hurdle for dad to overcome. 

In the late 90's dad was suspected to have had a mild heart attack or possible stroke but nothing was conclusive. It was later established he had angina and although he didn't need to use medication apart from a small dose of aspirin he was generally fit and well. He loved walking, dancing and going shooting in the country. In 2003 we all were going to Disneyland Florida for Xmas but everything was uncertain until the last moment as dad had pneumonia and it took a double dose of antibiotics for it to clear. Fortunately it did clear and we all celebrated Xmas in Florida. 

About 2-3 years ago Dad was diagnosed with pulmonary fibrosis, at the time I did read up on it but didn't really take on board this disease would finally take his live away from us so quickly. In 2008 Dad had a stent put in his leg as he was experiencing painful calves due to the angina and his consultant was going to perform a bypass but then later decided it wasn't necessary. At the time this didn't make sense but it's obvious now why that decision has been changed! After the stents Dad experienced some strange sudden falls for no reason at all. The Dr.s couldn't establish what was causing this but once again Dad over came this hurdle to build his confidence back up and he needed to build up his walking which once again he had overcame this hurdle and used walking sticks and trolley to help him walk normally again. In Jan 2009 Dad suffered from a flu virus and developed a dry cough which no one seemed to help him with. They tried changing his blood pressure tablets but that had no affect. He generally felt unwell all the time. At his last in late September 2009 he attended a review appointment with the respiratory team. They informed dad that the fibrosis had progressed and they wanted to start him on steroids. The tablet didn't seem to help him at all. My parents stayed with us in late Oct and looked after their grandchildren whilst on school holidays. Whilst they stayed with us I noticed Dad seemed tired all the time despite sleeping. I put this down to his age as he was 75 this year. Also, his appetite was not like it used to be. I remember him saying to us on his visit "I'll not be here for xmas and this will be the last time I come up to your house" Well in the two weeks following his health deteriorated. I went to Mum's two weeks later and took him into hospital. He had double pneumonia, thrush in his mouth which was so bad he could not eat. Whilst in hospital he perked up but unfortunately the hospital tried all the anti-biotics possible but nothing was working. Dad put up a good fight to stay with us but it was all too much for his week malnutrition body and fell asleep on my birthday 28th November.

Katrina
katrina@inquieti.com

Resham Kaur

My Mum Resham Kaur was diagnosed with pulmonary fibrosis in 2002. We think it may have been triggered by inhaling powder paint when she worked for 15 years in a factory manufacturing prams and pushchairs. Again the treatment like most others was just steroids to lower the inflammatory response. My mum was a fighter and continued to be independent until about 2006. She walked as much as she could even if very slowly stopping when she became too breathless and then continuing. 

Eventually over the last 2 years of her life the breathlessness became so bad that she was unable to dress herself or take a bath. She was on oxygen therapy 24 hrs a day. Nobody seems to care about patients like my Mum, all the doctors would say is this is how this disease is. It will gradually continue to get worse and there is nothing that can be done to halt or slow it down. Nobody prepared us about what to expect as the disease got worse, what to do, what signs to look out for. Watching someone you love struggle to get breath into their body is heart breaking. I was hoping to take some time off work to spend with my Mum before it was too late but I never really got the chance as her condition went down fairly rapidly and we did not realise what was happening and just put down her lethargy to being tired and not eating. Actually what had been happening is that her body had started to shut down 2-3 weeks earlier and having cyanosed feet was a symptom which no health professional alerted us to. My Mum was a great and courageous woman who did not want to be a burden to any of her children. Even when she was suffering she had a smile and never complained. She passed away on the 21st November 2009 at home. I miss her terribly and my only consolation is that she is now free of her suffering. 

Ginder 
Ginder_Dhaliwal@hotmail.com

Peter Smith

My husband Peter was disgnosied March 2007 with PF. He also has emphysemia & asbestostis. The PF causes the majority of his problems. We try to lead as "normal" life as is possible, but at times it is very hard. He has has had 3 hospital admissions this year. At times I wish I could talk to someone and tell them how I feel watching him suffering and struggling for breath. 

Margaret
magmiff@yahoo.co.uk

Jenny Dove

Hi I was diagnosed with PF last year and have been quite stable, although my brother, out of the blue, ended up in hospital. His heart was racing he went to the doctors was put on beta-blockers, that’s when he ended up in hospital his heart was racing to supply oxygen to the blood. when it slowed down they found he could not breath. He is now on oxygen. I have been looking on the web and came across two companies in America that is saying serracor-NK with a blend of sebkinase one is Pivotal health boasting a 95% success rate. I thought I would try it. Has any one else come across it?

Jenny Dove
jenny.dove@googlemail.com

Donald Banks

My father had suffered with breathing problems for most of his adult life, diagnosed as asthma and was on several inhalers.But about June 2007 had a fall and noticed that he felt it increasingly more difficult to get his breath and his inhalers being of little use and after several hospital visits he was put on 2 litres of oxygen 12 hours a day. My father lived about 200 miles away from me and whether he was diagnosed with PF then I was not told. 

Anyway, the end of June 2008 he came to stay for a few weeks while his partner went on holiday. I was extremely shocked on seeing him, thinking he only had a little difficulty in getting his breath! He could hardly walk from the car on my driveway to my front door! And the following night had a bad breathing attack and had to be rushed to hospital where he was diagnosed with pulmonary fibrosis and emphysema and given up to 2 years! He was in hospital for 2 weeks and was sent home on 6 litlres of oxygen 24/7. He never returned to his partner but came to live with me so I could look after him. Within 3 months he was put on 15 litres of oxygen 24/7 and was in and out of hospital. The end of October he had a heart attack, and just seemed to go down hill rapidly. Sadly, he died on December Ist 2008. The last 3 weeks were spent in hospital, the last 2 of which were in a hospice, who were a great comfort to my dad and our family. They allowed him to die a peaceful and dignified death. He told the staff there, he was not affraid to die, but didn't want to struggle for breath, I also said i did not want to watch my dad srtuggling, and they promised me that would not happen......they were true to their word!

My dads sister was also diagnosed with pulmonary fibrosis and she too sadly passed away 6 months after my dad. I was told it isn't hereditary, but it seems strange that too of my dads family have died from it and a 3rd sister died from emphysema! I desperately miss my dad, but know he is back with my mum and at peace. And can now take the walks and mow the grass he so wanted to do.

Trevor

My dad,once a very active golfer, currently 66 years of age, was diagnosed with PF in July this year (2009). He was initially told that it could be suppressed and that he would need to undergo some further tests to understand what the treatment would look like. Unfortunately, although he has had the tests we have been left 'waiting' for a further appointment and have now arrived at A&E in December due to my fathers distressed breathing and that he is curently on a chest ward having oxygen all the time. We have been told now that it is progressing but no one will give us any clear explantion or discuss the treatment that he is having. He currently cannot walk at and needs constant help from the nurses. He has 3 consultatnts who dont' appear to be talking to each other, one has advised us around support for my dad to go home and others, including the nurses, are saying a couple of months. I have read most of the stories on this very informative website and feel comforted in the fact that there is potentially some hope and really we have to keep pushing and asking. Something that I will do straight away - i haven't really 'surfed' more around further help available, as still coming to terms of the eventuall outcome this disease. Anyone that can provide any update on the alternatives or trial drugs that they have mentioned, I would love to hear from, or likewise any tips on how to handle the doctors and to what to ask for and not to dwell on the doom and gloom would be also very welcome. Trying to stay positive.nia.roberts@vodafone.com

Brian Oxley

My husband, Brian, was diagnosed with rheumatoid arthritis in the summer of 2006 at the age of 62. He was taking methotrexate once a week and having a blood test every 4 weeks. Everything seemed fine until we went on holiday in June 2009 when he suddenly started getting a little breathless when walking uphill in the Peak District. On our return home he saw our doctor who said he had a lung infection and prescribed antibiotics. Brian's breathing got much worse in the following days and I had to call our doctor out and Brian was admitted to the Norfolk & Norwich University Hospital on 2 July 2009. The next day he was admitted to the Critical Care Unit and a few days later had a tracheostomy because his breathing was so bad. On 10 July I was told that his lungs were so bad there was nothing they could do for him. On 11 July my husband was told that there was no cure and that his oxygen was going to be withdrawn and he would die. He was extremely upset by this news but was very brave and said his goodbyes to the family. The specialist told me that Brian would die very quickly (within minutes)once the oxygen was turned off but in fact it took 18 hours for him to die as his heart was very strong. My husband died on 12 July 2009 and I am still shocked and disbelieving as everything happened so quickly. I also had no idea that hospitals just gave up on patients because they needed oxygen to breathe. I am not certain exactly what caused my husband's pulmonary fibrosis but there are known links between methotrexate and pulmonary fibrosis.

Marie Mcelherron

2003 our favouite cousin hughie who had just retired from work was diagnosed with pf, he was the happiest person u are likley to meet. so we didnt worry to much as we knew nothing about this illness, but very quickly things changed before we knew it he was gone, we had heard all about his condition from his family so we knew quite a lot. Next was my sister phylis she was diagnosed may 2004 we were distracted because we knew what to expect we lost her august 2005 after only15 months and to top it all i was diagnosed jan 2005. I am still struggling every hour of every day i try to keep positive but its hard i also have mixed connective tissue disease and that dosnt help at this stage i would love to know what my prognosis is but i have not the nerve to ask. I am going tomorrow to see my consultant i might have courage i know it wont be long, its the speed of both deaths which is frightening, i had been with my sister on the wednesday she went into hospital on the wednesday and she died on the saturday there has to be some kind of hereditary thing somewhere. He had not even got to the oxygen stage and i have been using it now for a year so whats to come i dont know all u can do is stay positive and do as the doctors say ,., and hope that there is hope for some kind of cure in the future because i hope my children do not inherit the gene if that is the way it is.

Update on last story. Hadn't the courage again to ask about time left, 7 weeks ago I had a mini stroke while at a wedding and that has really knocked me back. I have fully recovered thank goodness, I am very lucky, cant take Asprin because I have a stomach condition called watermellon stomach, which means my stomach bleeds and thinning the blood would be worse for me. I am really scared of taking a major one and not recovering. It has left me very tired and more breathless than ever so I am on oxygen almost 24 hrs also i have another cousin diagnosed with pf. jack who is brother to hughie after only weeks he is on 24 hr oxygen. My nurse who has to come to me now had never heard of pf until recently, one of her mothers friends was diagnosed recently and only given 6mths.

mariemcelherron@yahoo.co.uk

Bob Burton

I am 51 and was diagnosed with IPF June 2008.I had my third back operation in Newcastle General Hospital in April 2008.I came home and became very breathless within two days I was rushed into Carlisle Hospital where I had numerous tests and then was sent to The Freeman Hospital in Newcastle where I had a Lung Biopsy which revealed I had IPF and Pneumoconiosis. I have been told by the specialist that I have between 6-8 years.I take steriods and immunosuppressants.I get very breathless walking short distances and going up the stairs also getting dressed, undressed and showering. I also get out of breath when sat in my chair. My specialist is very nice and caring which I feel very looky to have reading some of the letters. I am just going take every day as it comes. My brother very kindly bought us a Motorhome so we can enjoy the time together my wife and I have. Just sitting in the motorhome and having a different view everday helps also living in the Lake District (i must point out my wife is an excellent driver). To EVERYBODY out their Good Luck in what seems to be still a death sentence. If you so wish you can contact me by email.bobandsan@hotmail.co.uk.

Sue Jenkin

I was diagnosed with breast cancer in January 2007, I had a lumpectomy, and was told I was, as far as they could tell, cancer free. To increase my chances of the cancer not returning I was offered chemotherapy, radiotherapy and Herceptin. These treatments took 2 years to complete. At the end of the chemotherapy sessions, I suddenly developed severe respiratory problems. 

After 2 long hospital stays, and many xrays and scans, I was diagnosed with pulmonary fibrosis. The specialist felt that it was caused by cyclophophamide which is one of the 3 ingredients of the FEC chem. I was discharged from hospital with a written prescription putting me on 50mg of Prednisolone, on some of the notes (which I have since aquired) it says 0.5mg (the instructions of the specialist) After 5 months I had put on three and a half stone, I couldn't walk, just cleaning my teeth left me breathless, I had a wheelchair, a mobility scooter, I couldn't even attend to my own toilet needs. Every night I would cry myself to sleep, because, like many of you I had read the websites saying PF was terminal and nothing could help. I have a beautiful daughter, and two gorgeous teeenage grandsons, a loving husband, and devoted siblings. I would cry in bed KNOWING that I will cause them all such grief one day, I felt so ill I was convinced every day was my last. On a routine check up with the specialist, he did a medication check and when I said I was on 50mg of Prednisolone, he said, you can't be! and to double check when I got home, and sure enough I was! he decreased it by 10mg a week until I was down to 10mg. If you would like to see pics of me before the steroid OD and then 4 months later email me, you would NOT believe what it did to me, my hubby used to say he thought my head would explode! I have lost 2 stone, but because of PF I can't excercise to burn off the rest. I feel doomed, thats the only way I can describe it, I find myself thinking, will I see next Christmas, will I live to pay off the mortgage, every day I am struggling more and more to breathe and nothing can help me, I cry when I'm alone, I am crying typing this, as if its my epitaph. I try to be upbeat with my family, I so wanted to live to be 100, and I'll give it a damn good try! Sue Jenkin

Gillian Huskinson

I have been reading your storys and have found them to be very helpfull and also very sad im going through the same thing right now and don't know what to expect next as you noone tells you anything about this apart from the outcome if anyone can tell me anything i would be very grateful yours sincerely gillian. PHUSKINSON8@AOL.COM

Josefa Dorrego

My mom who up to her 91st B-D in 2007 was a vibrant, active woman who travel on her own, was diagnosed the same year with PF. She survived a serious bout of pneumonia in Nov 2008, but since then her health has been on a continuous declined. She barely eats, is extremely weak and tired all the time to the point that she does not go out anymore, except to the doctor. The annoying part is that before 2001 in response to a persistent cough her doctor had told her she had scar tissue in the lungs but never elaborated to her or to us the full meaning of this terrible and terminal condition. I had to find out the extent of it through the internet, a sad statement on modern doctors. Has anyone tried the alternative medicines Serrakor and Clear Lungs from Pivotal? Could you please share your results and write to me to: aliciadorrego@yahoo.com

Dave Mcdonald

I am 59 years old in June 2009 i went to my GP with a bad chest the doctor that i would normaly see was not there so i saw a new GP she sent me to have an xray the next day, when i had it done i went back to the doctors 2 days later i saw the doctor that i normaly see he said that she had jumped the gun too quick as i only have a chest infection. 1 week later i was sent for for the results of my xray, they told me that i had pulmonary fibrosis it was a big shock to me that i have a complaint like this, I have had all the test done to confirm this with a biopsy and scans,and lung function test as well, it is now feb 2010 and just found out that life maybe a little shorter than i expected.
I have only just told my wife but not all my children,it is hard to tell them or explain how i really feel and what the prognosis is and what it means, I am trying to find a help group to get us through this,i have yet really to come to terms with it, my breathing seems to be getting worse every day things that i do get worse every day.I am trying to put things right before the worst happens. I am told that it could be 3-5 years or less,but i have to leave it ok for my family. I know i could have done more for them when i was well so now i feel that i have let them down.I have smoked since i was 14 years old,and finding it very hard even now to stop.Im just on a very big downer at the moment.
Thankyou for reading ,if you can give me advice it would be great Thank You. daveandangelamac@tiscali.co.uk

Sue Beale

I have just lost my very dear beautiful wonderful mum 2 weeks ago to pulmonary fibrosis and on top of that she and me together have gone through 11 years of bladder cancer and 20 or so general anaethetics so we had one big roller coster ride but she was a fighter to the very e nd and l was with her at the very begining of the cancer journey all appointments treatments highs and lows and then the second major journey with the fibrosis and l lay beside her on her bed as life left her this moment in time is painful and l miss her so much l have written all this down and hope maybe when l feel able l will be able to write a book on this experience that may help others but this moment in time is not right l miss her so much and although a fully grown up mature person it is as though l have gone back to a child l want my mum back! sube4711@googlemail.com 

Nancy Stone

In 2004, I was put in the hospital w/pneumonia. Upon returning home, I developed a chronic cough (dry). Nothing seemed to stop it. I then began to have trouble breathing - to the point of asking my doctor to put me on oxygen. It was terrible. I decided to go to a lung specialist and he wanted me to have a lung biopsy and even said I probably had about 5 yrs to live w/this condition (Interstitial Lung Disease - Pulmonary Fibrosis). My left lung is almost completely scarred and part of the right lung as well.

My niece then talked me into going to a homeopathic doctor she had taken her daughter to (who has asthma)and I was very skeptical. However, I went. He told me he could not get rid of the scarring I already had, but he could stop things where they were and I would be able to breath better and feel better. That was 6 yrs ago and I am breathing good (as long as I don't overexert myself). I thought I was going to die a slow, painful death - now I have hope. I am 65 yrs old and dying was not the problem, but I didn't cherish suffering like someone w/emphazema in the process.

If I had it to do over, I would have gone this route a long time back. What does it hurt to try. Gemstone1944@hotmail.com
  


Brian Dobie

I thought i had it bad untill i read some of your stories i have had ipf for 4 years. when ist told i had it was told 3 years and you will be in a bad way well i know its getting harder but i am still working i get up in morning feeling fairly normal and start going downhill about 10 and by 4.30 when i finish work im done in by 8.30pm. i just wont to go to bed i think of myself as aripe plumb in the morning and a dried up old prune at night i was beginning to think i was over reacting to the way i was feeling as on the outside i look fine but everything is such an effort. i try to work the same way i did 4 years ago and get so frustrated because the effort required to do anything manual takes so much out of me sometimes i feel like a 55yr old living in a 75yr old body no disrecpect to any 75s out there but what i found really frustrating was not having anything or one to relate to i now realise i am quite lucky in that my illness seems to be moving slowly and having read your letters i feel heart sorry for the people who have it bad and i count my blessings i agree more should be done aboput this illness but i take my hat off to you alland say dont let the ....... drive you down i mean to keep fighting all the best to you all. brian.dobie@hilton.com

Nikki Bell

Hi just in response to the people on here thinking about trying serrakor or clear lung s , have tried them and made no differance to my dad , despite the encouraging write up !!! thats not to say they wouldn,t work for others !! my dad s on oxygen 24\7 so might help some one not as severe , hope this helps ,, good luck to you all helps to know your not the only one s !!!!! nikki xxx nikkibell666@hotmail.com

Andrew Harrison

My father-in-law was diagnosed with this awful illness a couple of years ago & he is now very frail. I don't see him as often as my partner does, but I can see that his condition has deteriorated. He is a unique and clever man, who finds it hard to accept he is unable to do the things he used to do. We all know that there is nothing that can be done, but I still say a little prayer every now & then to ask that if God could perform a miracle & give him back his health!

Glynis Pender

Hi my name is Glynis and I am 53 years old and just been diagnosed with fibrosis of the lungs. For the past 5 years I have suffered with severe rheumatoid arthritis & although been on methotrexate & adalimumab (humira) anti tnf drug the inflammation in my body has never been controlled. The exact cause of the fibrosis is as yet unclear although I have recently been informed by my consultant that fibrosis can be caused by methotrexate and exacerbated by adalimumab...... these drugs mask the signs & symptoms of pain & fever so my lung fibrosis was found by chance but much too late for me to have a biopsy. At the moment I have 58% lung function. I wish love & luck to everyone. Glynis 
johnpender261@msn.com

Alan Whitehurst

I am writing this 9th April 2010. My husband Alan was diagnosed with IPF 2½years ago in 2007 after some months of coughing and breathlessness. He was put on 30mg prednisalone + azathioprine + n-acetylcysteine. It was soon obvious that he could nor tolerate the azathioprine (severe diarrhoea + weight loss) so he stopped that. He had given up smoking a year before and put on ½stone but the steroids just loaded weight on - another 2 stone very quickly. He also had many other steroid symptoms - legs swelling - cramps - increased pain from his arthritis to name a few. His quality of life was severely affected so when it seemed the steroid was not doing anything to help the PF the Dr said to gradually wean him off - which we did in Summer 2009. Since then he has just been left to his own devices. In Oct 09 he was prescribed ambulatory oxygen at 2litres but rarely used it. Christmas 09 saw him with a chest infection which seemed to clear up with antibiotics but we have since been told it was probably simmering on until 3rd week of Feb he got another chest infection - antibiotics did not clear it up so a 2nd set was prescribed. Until then he had been a relativel fit man of 66 and attending a respiratory rehabilitation programme of exercise and education into chest problems. 4th March saw a sudden decrease in his breathing and we suddenly had a consentrator in our home dispensing 2litres/hr of oxygen which he had to use 24hrs. 8th March saw him turning blue at all his extremities and whisked off to Stafford Hospital. 10th March saw him fighting for breath even on 100% oxygen. He was sedated and put on life support in Critical Care where I was told he might not last more than 2/3 hours. That was on of the blackest moments of my life. He had septicaemia, pneumonia on top of the PF. He suffered respiratory and heart failure and had an enormous amount of drug support. Many Drs were very pessimistic but luckily the head of dept was ready to give him a go. However my dear Alan had a fighting spirit inside of him and 3 weeks later saw him off life support. The main Dr was astonished and said that he had surpassed all his expectations. He gradually started eating and drinking and 2 days ago was transferred to a normal ward. He lost 36lbs in weight, has no muscle tone and no strength in his legs/ arms etc. But he continues to fight and is now back to his 2litres/hr ready to go home when he is stronger. What really upsets me is that we were never given a prognosis - just told it was a very slowly degenerating disease and that since his body had rejected the 2 drugs nothing more could help. This awful time has taught me one thing - when he is better I am going to fight first of all for a referral to a specialist with a specific interest in PF (I'm told we should find one in either Birmingham or University Hospital, Stoke) and secondly I am going to ask advice and look into the drugs on the US sites (Serracor etc) as mentioned by some above. I discovered these sites a few days ago and have printed out to distribute to anyone who will listen. We are lucky as our elder daughter lives in West Virginia and can organise things over there for us. We have been taking Vitamin D for some time now as a support for bones (I have a very rare Carcinoid cancer metastisised in my liver and it can spread to the bones) and having read and watched videos will continue to take it at an increased dose - having talked to our excellent GP. My message is this - ask ask and ask again for information - new products etc. Don't accept that nothing can be done - I will update this message if we get anywhere. If you want to contact me I can let you have links to US sites and any more info I find. Pauline: paulinemw@talktalk.net 

Margaret & Patrick McKenna

My husband was diagnosed with PF in 2006. He is doing well on steroids, other drugs etc. He does like to get holidays but difficulty getting insurance particularly if you say oxygen is used, even it is just occasionally. Has anyone got insurance companies who will cover for oxygen use. thank you we just live every day at a time. margaret-mckenna1@sky.com

James 'Jock' Fleming

My Dad was diagnosed with pulmonary fibrosis in September 2008, aged 77. For a while symptoms were not too bad but I think, looking back, things started to deteriorate slowly from the summer of 2009. Unfortunately Dad was also undergoing ongoing treatment for bladder cancer and then started to develop symptoms of depression, brought on we feel by worries over my Mum's health as she too became ill in September 2009. By Xmas 2009 it was difficult to tell which was the most predominant,,, his worsening depression or fibrosis symptoms. He was admitted to hospital on 12 January and has not been home since. His depression cannot be successfully treated due to problems with really low blood pressure exacerbated by medication. He needs ECT treatment for his depression now but is not fit to undergo this. He went in to urine retention and needs a TURP as his prostate is obstructing his bladder. The op, scheduled for tomorrow, has been cancelled because he has developed pneumonia and he is very poorly as I write this. He is on IV antibiotics but they cannot find what "bug" has caused the pneumonia so is not really responding. I was phoned by a doctor this evening to ask what the family's feelings are as regards ventilation should things deteriorate.... this came as a huge shock as it was not a scenario I had played out in my head ! They still hope he will start to respond but the very fact they are trying to gauge our feelings at this stage is not encouraging news. Having read other stories I too am now starting to think there could be a genetic link..... My aunt [Dad's youngest sister] died just before Xmas last year very shortly after diagnosis of PF. Two of his brothers died of what we were told was "lung disease" but my Dad attributed this to them having worked down the mines... perhaps they too actually had PF. As I end this I am unsure of what my family and I have yet to face....
peteandlynnnorris@tiscali.co.uk

Elsie Edgington

First of all I would like to say a big thank you to the people who set up this website. I would also like to say a heartfelt thank you to everyone who has shared their stories. The story I am about to tell is about my mommy. I may be almost 51 years old but she is still my mommy and I still need her. I noticed another lady posted that she felt like a little girl again despite being an adult. My mom Elsie is 97 years young! She will be 98 in July this year (2010). We had planned and hoped that she would be receiving the telegram off he Queen. She is made of strong stuff and has overcome some serious health conditions. Mom has been seeing the G.P for several years with chest problems. We could often hear her chest bubbling from the other side. Having been treated for fluid on the lungs on several occasions the G.P referred mom to a chest specialist. He thought rather than fluid mom probably had hardening of the lungs!!!! He explained that the tissue in the lungs had become rigid. Further down the line mom got chest infections and if she was seen by a locum doctor she was sent to hospital. My moms diagnosis is quite recent. I didn't know until I found this site and read the stories that it is a terminal condition. Why do Doctors keep information to themselves? It now appears mom has had this condition for many years. It is only the last few years that she has been significantly poorly with her chest. Even more so since the start of this year. Mom spent New years eve/day in hospital with breathlessness and a poorly chest. The hospital gave her oxygen and sent her home later on New Years day. One good thing to come out of this episode is that mom was referred to a respiratory clinic. As a result of the appointment and our perserverence mom has been prescribed ambulatory oxygen at home. What a battle we have had and continue to have to get any kind of help, advice or equipment. Mom lives in warden control accommodation/sheltered housing. The criteria for living there is you have to be fully independent. It has now reached a point where mom is definitely no longer independant. The last 4 months have seen a big decline in moms health. She refuses food and drink. Sleeps a lot and can now hardly stand up. She can no longer do anything for herself. During this week my partner has stayed with mom overnight as he was too concerned to leave her alone. He bought her to our home where she has stayed for the last few nights. Not great as she is sleeping on our sofa. I fear we are nearing the end :`( We wont be able to continue this regime for much longer. I don't want her to go to hospital..............what do I do for the best. Right now she is watching the Snooker on our TV and although a waxy colour she doesn't look too bad unlike last night when I thought she was dying. I just wish I knew how close we are to the end. Best wishes to each one of you. Please feel free to contact me via my email address. I will keep you up to date with progress. medge0706@aol.com

Just a quick update.....mom has now been provided with an Oxygen Concentrator.  Moms Acute Care Manager prescribed it via NHS for her earlier this week. The concentrator was delivered today (saturday) as mom seems to be using up cylinders very quickly. We were fortunate to be able to purchase an Oxygen/heart monitor from a Nurse. I find the monitor helpful as we can measure the levels as and when we choose. Since using the monitor over several months now we have seen a decline in moms at rest level. Although helpful the monitor has disadvantages as you tend to watch it very closely and can become anxious as the levels go up and down. I just wish I could find out more about the condition. If you want to email me with your experiences or ask me anything please feel free to do so. Look after yourselves xxx

Linda Jackson

My mum was diognosed 18 months ago with Idopathic Pulmonary Fibrosis.Unfortunately on the 24th May 2010 she lost her battle with cruel discease.

She had been attending the St James's Hospital in Leeds and her specialist was amazed at how long she had fought the discease and each time we attended our appointment he kept saying she was one of the lucky ones!  One thing that mum kept saying was when she was diognosed one of the nurses said to her "I bet you wish it was cancer don't you" and she thought Oh that is a bit harsh.  But in the end she did wish it was cancer that she had got because in that way there would have been more help, support and in some circumstances a cure in which case there isn't one for this horrible discease. 

My mum was a fighter and loved us all with all her heart, she was such a great wife, mum and most of all Grandma.  She doted on them kids so much and I think that was what kept her going so long. 

I am still in the bitter and hurtful place at the moment of asking why did they take her so young of 57 when there are people out there that have no wish to live, trying to kill people and hurt inocent people when he has taken such a special and loved woman. 

She was pinning her hopes on a lung transplant but that was thrown in her face at one of the appointments because of her BMI.  This is a load of rubbish if anyone reads this who has anything to do with lung transplants.  My mum has always what you could say big boned and in years gone by there was nothing like a BMI it was frame sizes of small, medium and large. Despite losing a lot of weight through not having any taste in her mouth and only eating fruit she was still classed as overweight and had to lose another three stone before being considered.  You could see it in her eyes how gutted she was and how mad we both were that the only chance of getting out of this cruel mess was a lung tranplant and somebody up in Newcastle sat behind a desk that doesn't know anything just rejects people just like that because of their BMI.  She was dying anyways what harm would it have been to just put her on the waiting list and have some hope there rather than be sent away to die.

I don't know if this helps anyone but there were a few things that my mum tried to help her.  The Olbos Oil that you can get for inhalation.  Before she would do anything she would stick a few drops on a tissue and this seemed to clear her and help her get from the chair to the chair lift or car.  The other thing was vicks on her chest on a night and I don't know if she should have done this but she thought shit to it, was one of those sticks you stick up your nose and inhale, that seemed to clear her throat. 

Can't begin to tell you all how sorry I feel for you and I wish you all the ver best of luck and you never know in the future there might be a cure for this horrible discease.

Just wanted to put a few points there for myself and on behalf of MY MUM.If I can think of anything else when I get out of my bitter stage I will post more information.  Wishing you all the best of luck.  Sharron 
sharronpearson@live.co.uk

Alan Barbour

Yesterday afternoon I found out I was suffering from IPS.

Last Sept 2009 I was admitted to Brighton hospital for a triple heart by-pass. On waking after the operation I had great difficulty in breathing and was only able to take short pants, of less than a second. I was also in great pain.No member of staff seemed interested and told me to cough and breath deeper.Prior to my admission I had informed the doctors of my extreme claustrophobia and if possible could I be near an open window.After three days of agony they finally relented and sent me for an X ray.This showed that my lungs had fluid in them and also had not inflated properly. Needles were inserted into my back abd the fluid drained off. I still remember pleading for pain relief or to be put unconcious because of the pain. I could still not breath anywhere near normally. Then despite my protestations and obvious distress they attempted to fit a pressurized mask over my face in order to inflate my lungs with a high pressure air/ oxygen mix. I was so distressed that they had to stop. They then came up with a clear plastic hood rather like a soft space helmet which would again be pressurized and enable my lungs to fill. What they neglected to say was that it to two nurses to stretch the collar of the device, a sort of neoprene /rubber, in order to get it over my head, which upon release clamped around my throat in what seemed to me at the time to be a death grip. Remember these people had been informed of my claustrophobia. Afer I attempted to rip it from my head in extreme panic all I was told was that it cost the NHS  Ninety pounds.
I eventually escaped after 7 days and got home still unable to breath properly and then had a month of visits from the district nurse as my wound was infected and weeeping pus and blood.
Despite all this I was determined to make a full recovery and as Christmas came and went I was able to at least walk to my local shops. I felt I was progressing, but not at the rate I expected. I could not put on socks or tie myshoes without getting into a panic as I could not breath. 
I saw my Consultant in Feb 2010 and was more or less told that my "Panic" was more than likely in my head rather than anything medical.

I disagreed vehemently and a series of tests were organised. Xray, ECG,
Lung function and finally, because of a poor result of one of the lung function tests, another CT scan. Prior to my heart surgery I had had two CT scans which although were primarily for my heart also showed my lungs which were clear.

After being asked to wait a couple of minutes whilst the CT scan was checked for clarity insted of a couple of minutes it was more like ten.
The technician said that he had shown the scan to a doctor who wanted another scan taken, this time lying face down. This was duly done.

Since my visit to my Consultant in Feb 2010 my breathing has got worse and the slightest exertion causes me breathlessness. I have a cough every morning which can last an hour and results in me retching and vomiting. When I lay on my bed to sleep the cough returns for at least 15 mins.

It took me two days to cut my lawn with a hover mower, resting for 10 minsafter just a couple of mins mowing. I knew things were not right, but everyone just kept telling me that heat surgery was a major thing and it would take 3/6/ even 12 months to recover. Then the diagnosis. Pulmonary Fibrosis. I am reminded of the famous quote uttered by Spike Milligan that he wanted put on his gravestone. "I told you I was ill"

I live alone but would appreciate any mail/advise. Regards and love to you all, Alan. alcabar1@aol.com

margaret

I have just been diagnosed I.P.F.I am 72 years old and worked full time to the age of 70 I have been doing some part time work for the last 2 years I would also appreciate any info of any of the herbal drugs or american drugs that any one has tried. at the moment I am very fit just walked 5 miles today yes get out of breath but not a problem at the moment I have always been very active and running for the bus or train was never a problem I am under brompton London yes I have had exellent treatment scans exrays blood tests bronoscopy but I dont have a cough I think my doctor thinks Im a pain in the backside. 
lionmay7@yahoo.com

Rob Parsons

My husband passed away on September 19th 2009 approx 18 mos after being diagnosed with IPF. He was 62 and a much loved dad and grandad. Before his diagnosis we had never heard of this disease. Only discovering the horror of it through the internet.
I felt my husband was 'dismissed ' by his Consultant and, with a few exceptions,many of the medical staff. Compassion and human kindness costs nothing. My husband was told there was nothing more could be done for him while he was alone and vulnerable. I was called to the hospital by a concerned nurse who had found him abandoned and bereft. Trying to come to terms with his death sentence.
We brought my husband home to die. I gave up work to be his full time carer. He couldn't face any more hospital stays or visits. 
He died peacefully at home with just myself and our three children telling him how much we loved him. 
I feel great sadness that a kind,gentle family man was treated as a 'number' by a hospital consultant. I also feel great pride at his bravery and concern for me through all his suffering.
It would have been our 40th wedding anniversary on 4th July 2010. I have written this as a testament to how much I loved him.
I send my heartfelt good wishes to all of you who have this disease and also your carers. Stay strong for each other and never allow anyone to take your future away from you. Where there is life there is always hope.
Love you Rob x

from you. Where there is life there is always hope.

Len

My father was diagnosed with pulmonary fibrosis over 3 years ago now.At first he coped with the condition but as the years have gone by he has deteriorated.He now has oxygen 24 hours a day.he becomes extremely breathless when talking never mind moving . he used to be a very active man,grew his own veg and flowers took great pride in his garden,was an active member of the community.to see him now is very upsetting and frustrating because we as a family cannot help him.He goes through times when he wants to die,and has even planned his own funeral.
because he is 74 and has a heart condition his specialist has said there is no point in trying a lung transplant. He also has very disturbed nights,has nightmares which has a knock on effect with my mum,so disturbing her sleep.

We think he has an idea how long he has left,and all find it difficult to cope with.our next visit to see him may be the last.
we as his family want him to go in his sleep rather than suffer the way he is as the moment. He puts on a brave face when we visit but is a different person alone with mum. As the eldest daughter im finding it hard,and would like someone who has been or is going through this to talk to.
thankyou for this oppertunity to talk.
 
 
 

Ethel Rodgers

Ethel Rodgers My mum is 75 and was diagnoised about 6 years ago, she had suffered with recurrent cough for over 2 years and was constantly being described anti-biotics. As a relatively fit lady always busy this constant cough was more irritation than anything else. Finally the last coughing bout and seeing a different GP at her practice she was admitted into hospital for tests and the diagnosis was given.
Mum coped well with her diagnosis at first, increasing her steriods up to 12 and then weaning down, only to have to increase her dosage everytime she had a relapse. She has tried taking part in drug trials to help other suffers but has not managed to maintain on the trials for a variety of reasons. As of now she has declined rapidly since the begining of the year and has lost over 4 stone in weight and so is very frail. She has become increasingly breathless even at rest. The Consultant at the hospital on the last in-patient visit says she is not bad enough for oxygen but sometimes she is so blue round her lips fighting for breath I would like to question his judgement. Now to make matters worse she sufers from constant mucus draining down the back of her throat she feels she is drowing. I would love to be able to sort this terrible debilitating condition out for her but unless we can find a cure, myself like others will lose our loved ones over and over again. Jo Mead jomead1@hotmail.co.uk
 
 

Ged My Father

 Ged my father "Dad was diagnosed with IPF in February 2010,unfortunately after scans etc Dad is right at the end of this horrible condtition.He is 75 years of age and has been a very fit man which i feel has helped him stay well for so long. Dad lives in South Wales and is being treated really well by his consultant. It is horrible to think there is nothing i can do other than be there for him, after a bout of pneumonia Dad did get very scared abd thought his end was near but he recovered and is doing well at present, he is really positive and is doing all he can to stay active and independant i really admire him. I can only say to those going through this try your best to stay positive and supportive believe you me i know how hard that is to do when it is happening to the most special person in your life.
Lorraine "  
 
 

Ron

Ron my dad very sadly died last week, he was diagnosed with this dreadful disease in june and was on oxygen 24/7, the weekend before he died he developed a chest infection which rapidly turned to pneumonia, the hospital did all they could but my dad just did not have the strength, we are all suffering his loss as he was a true gentleman and at only 67 we thought we would have lots of time left with him, such a sudden loss is very hard to bear. 
Gaynor gaynor1971@hotmail.co.uk        
 
 
 

Fiona Robinson

 Fiona Robinson - My Mum I found this website whilst trying to cope witg my grief. My mum died at 42 years of age on 11/12/09 and even 9 months later I am still trying to come to terms with what has happened.
She seemed fine for years as she never told myself, my brother or my sister the diagnosis, she would always say it was bronchitus or just a random chest infection. We in fact found paperwork from 2003 saying that she had lung abnormalities and she missed appointments and stopped taking medication when my dad got mentally ill.
I was at University when she started getting worse and nobody at home told me what was happening. I got a call one morning to say she had fallen unconcious, that she was in hospital and the doctors had saved her and that she just had a chest infection and would be ok. Thus, I went back to University after a few days. All that week it was like someone was telling me i should be at home and the night before she died i had a horrible feeling and i knew. I got back from a night out and 2hrs later at 6am i got a call to say her lung had burst in the middle of the night, I went home and she died in my arms that afternoon when the rest of the family had gone home for a break. I do believe that she was waiting for me to come home to her. My mum was a nurse, she knew what was wrong with her but I also lost my best friend that day, my mum had a heart of gold and i cannot understand for the life of me why anything could take her away. If I could be even half of the person she was I would be happy. To make matters worse, we have since found out it is hereditary and at least one person in every generation of our family has succumbed to this evil disease. And now another family member may have it. My only regret is not being there and not telling her i loved her enough. My heart goes out to everyone with this disease or who has lost a loved one from it xx
 
 

Mary Murphy (My Mum)

 I first remember my Mum becoming short of breath when I was seven. We were on a trip to Ireland and I remember being impatient that she couldn't clamber over the pebbles on the beach as quickly as I could. The photographs actually show her lagging behind - but I think she would have attributed it to a lack of fitness, rather than knowing anything was wrong.
 
Her symptoms became progressively worse, a daily fighting for breath, associated side effects such as anaemia and of course the unproductive, endless cough. The doctors said it was idiopathic, and I agree, it came from nowhere and was utterly senseless. How could a non-smoker in her mid forties suffer from a terminal lung disease? How could they say there was no hope for my amazing, beautiful Mum who always did the right things in life for her health and for everyone she knew?
 
She eventually passed away when I was thirteen after being in intensive care for 2 weeks after a rapid decline, and I miss her every single day. I do occasionally feel cheated that she hasn't seen the birth of my brother's children or any of my academic achievements. But most of all, I feel pleased this foundation exists and can support sufferers and the people that love them. I hope that further research into Pulmonary Fibrosis can give patients hope and answers, alleviate their symptoms and prevent others from going through what I & my family had to experience at such a young age.   
Fiona Murphy fiona1287@hotmail.com
 
 
 
 
 
 

Terrence Winder

I am writing about my dad who was diagnosed five years ago with Pulmonary Fibrosis and the first few years we coped but these last few months he has deterioated rapidley bieng hospitalised in may with minor heart attack , pnumonia, chest infection and recently with another chest infection i watch him struggle for breath and its heart breaking ,he has been on the medication that you have all mentioned in your write ups but they only suppress it for so long , i am his carer too and am now considering giving up work to devote all my time to him now as even though we have had a lovely summer he has had to wear a thick coat as he is cold most of the time and as winter is now fast approching am dreading what may be round the corner . my thoughts are with you all out there and thank you all for time spent reading this . 

Linda DeVelbiss

 JD32@CHARTER.NET LINDAN DeVELBISS 
 
"I was diagnosed with HP - Hypersinsitivity pneumitis - last February.  It has been a frustrating ride for me.  I am 57 years old.  Have had a smokers type cough for over 12 years.  There were times that I went to the ER because I felt like I couldnt breath - never in my life had asthma.  Was told I had it now (then I was age 45).  I now have a very good GP and was told that should have been a huge red flag.  That, as well as the crackling in my lungs all the medical personnel kept wondering about - but did NOTHING about!  The caughing was unreal. For 12 years!  I was put on every medication you can think of - none of it worked.  I finally got a GOOD pulminary specialist and ordered the right tests.  At first I was on oxygen 24/7.  Now just at night when I sleep and when I exercise.  Yes at first I was on Prednisone and zythromycian for three months.  The coughing stopped completely - no clearing my throat any more.  Life was actually much better.  Then after a biopsy and bronchcosposie (sp!),  docs said the medications I was on would not help,  so I was weaned off.  Taking absolutely NO medications now, and doing unbelieveably well! I started taking enzymes from a company called biomedicals.  Spoke with people there and asked many questions before I took the enzymes.   But I started them right after I went off all the medications.  This was four months ago.  My oxygenation is so much better, absolutely no caughing or throat clearing.  First time in 12 years no caughing,  this at this time of the year.  Winter has always been the worst for me - but so far so good.  I talked to several people that also took this and it helped them as well.  One person told me they just recently went to the doctor and was told the fibrosis was gone and also the crackling in his lungs.  He was worse off than I was,  when he started in February of 2010.  One man told me, when he was 78 his doctor told him he would die in 4 years.  he wasnt going to let that happen.  He went on line and found these enzymes, 6 years later he is shoveling snow in the winter and running up and down two flights of stairs all day long and doesn't get winded at 86!  You have to be careful of the product you get.  If you dont get the good stuff it will not work.  It has to have a good stabelization to really have the max benifit.  The product we are taking is truly the best because it is effective.  If you would like to know more please do not hesitate to e-mail: JD32@CHARTER.NET
LINDA D."  
 
 

Hugh Campbell

Myself I was diagnosed with IPF in nov.2005 and given alife expectancy of 4 years.I was at the time starting to train for my 14th.half marrathon when the symptons first showed themselves.at that stage iwas prescribed 100 mg azathioprine,15 mg prednisilone.like everyone else i accepted the fact that quality of life was not good,however,thanks to the support of my great GP who encouraged me to try and keep up with my excercise,all be it at avery reduced rate,i have just completed the great scottish half marathon in a time of 3 hrs 45 min.not agreat time when yoy consider that at my best i could do it in under 2hours.Iam now 64 taking 50 mg of azathioprine,5mg prednisilone,and am on what i term as bonus years.WHAT IAM TRYING TO SAY TO FELLOW SUFFERERS IS THAT TRY AND MAKE THE BEST OF WHAT YOU HAVE GOT.      
 
 

 

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