Here in the UK in the year I was told I have IPF (Idiopathic Pulmonary Fibrosis) 5,000 others received the same news. Somewhere between 3 and 4,000 have already died. They didn’t last long enough for a cure which will probably come from genomic developments – so said my consultant.
*If you know of anyone in a relevant field please let me know.*
This may or may not be genomic but it is the first ray of hope (I think) that I’ve seen for a long time;
An intriguing article that cuts through the fluff and talks about the realities of finding a cure for IPF. Both Esbriet and Nindetab are mentioned. The IPF-associated protein that Elias’s team found—CHI3L1—“has been retained over species and time…We knew Mother Nature doesn’t do this unless it is very important.” When his team looked into it, they found CHI3L1 helps “stop cell death, while stimulating fibrosis and repair. It is a primordial, and fundamental, defense mechanism.” Hunninghake wrote in the NEJM a revolution may be afoot. The new IPF drug trial results alone are “a major breakthrough….We may soon have choices in the medical management of pulmonary fibrosis.” It is even “reasonable to shift our understanding of the pathogenesis of this disease. It is now clear that (IPF) is a disease perpetuated by aberrant wound healing, rather than primarily by chronic inflammation.” In part it says: “Via further experiments, Elias’ team found IPF is, in part, caused by fibrotic healing run amuck, trying to keep up with IPF’s ceaseless lung injury. Why is it ceaseless? “The injury process is still enigmatic.” But it is real. Doctors find, in autopsy, IPF patients’ lungs possess old scarring over old injuries—and fresh scarring over new ones. Elias, and the team of Yale Translational Lung Research Director Erica Herzog, are further investigating IPF mechanisms. They are also screening for drugs. They have identified an antibody they will turn into a drug via the above (CADET) grant for lung drug design.” “We are very excited about this whole area. We plan to stay in it for a while.” Idiopathic Pulmonary Fibrosis: Hope, At Last There have been stunning “firsts” in research on idiopathic pulmonary fibrosis (IPF), a mysterious disease that stiffens and stills the lungs, killing half its victims in three years. In May, results of Phase 3 clinical trials on the first two effective drugs for IPF were published in the New Englan… biosciencetechnology.com
2015 April – IPF – Idiopathic Pulmonary Fibrosis – Where I’m at & where the IPF community is at with IPF researchers
IPF – Idiopathic Pulmonary Fibrosis – What’s it like if you’ve got it?
VIDEO NO 1- Please watch the first 5 minutes-ish
There is some hope – My ‘Roger’s IPF story’ and approach to healing is at the foot of this evolving research page.
Life is still sweet: I don’t feel sorry for myself. My suffering is minimal compared to several dear friends who are seriously ill or who have died in the recent past.
I’m ‘winning’ in the sense that more than half of those diagnosed in the same year as myself are now dead.
I have the support of Marion, my wife, I have faith, I have an education, & for however long I might have left I have a purpose – celebrating & exploring inter-spirituality. Life is still sweet – every breath, every day.
However I also try to rehearse death with every breath and leave the decision to my Maker.
As the saying goes, “Trust in God – but first tie your camel.”
VIDEO No 2. 30secs Shortly before succumbing to the disease, Evel Knievel recorded this –
SOME KEY FACTS
PLEASE HELP RAISE AWARENESS OF THE PLIGHT OF UK’s PULMONARY FIBROSIS PATIENTS – basic information for healthcare professionals, social care professionals, politicians – and patients
IN THE UK 15,000 people have Pulmonary Fibrosis (PF). Five thousand die each year. HERE for USA
ANYONE CAN GET PF – but adults between ages 30-80 are at higher risk .
CURE: None – 50% of those diagnosed die within 36 months. PF is relentless, progressive & terminal.
WHAT HAPPENS? Patients gradually lose the ability to breathe as their lungs fill with scar tissue.
PF IS INCREASING Since 1999 the number of patients with PF has increased by 156%.
MISDIAGNOSIS More than 50% of cases are misdiagnosed for a year or more.
”SOME PATIENTS SAY ‘I WISH I HAD CANCER!’” says consultant Dr Toby Maher in BBC article (RP I don’t! – There are only two forms of cancer, of the ones listed here, that have a worse prognosis that IPF)
PF PATIENTS ARE NEGLECTED compared to cancer patients. One example – the UK government invested only £600,000 in PF research last year – leukaemia research alone received over £32m.
PF receives nothing like the same level of prioritisation as cancers of comparable mortality, eg leukaemia – yet PF – kills more people each year than this one form of cancer alone.
UK GENERAL HELP: currently it is difficult to get comparable, appropriate help from most agencies. IPF is a rare disease & many doctors never come across a single case. Ask your MP to help.
IPF HITS THE FAMOUS AS WELL AS ORDINARY GUYS LIKE ME
US Governor (retd) Olene Walker – https://www.youtube.com/watch?v=rhV4zgRdLUI&feature=youtu.be
Evel Knievel & Marlon Brando
Living with IPF – Colin’s story
There are many such stories, many on YouTube. Mine is at the foot of this article.
Published on 26 Sep 2014
Colin was diagnosed with idiopathic pulmonary fibrosis, IPF, after he became breathless on a walking holiday in Cornwall. Colin was sent for tests and scans and eventually saw a consultant who diagnosed him with IPF. IPF is a build-up of scar tissue that makes lungs thick and hard, making breathing difficult. IPF is incurable and will progressively get worse. About half of people with IPF only live for three years after their diagnosis. In this film, Colin talks about how he is living with IPF and how he has been supported by the British Lung Foundation.
NOTES/EXTRACTS TO HELP ME ASK QUESTIONS – NB I’m still not sure if IPF is an autoimmune disease or whether autoimmune diseases are frequently associated with it.
WHAT IS PULMONARY FIBROSIS?
The word “pulmonary” means “lung” and the word “fibrosis” means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But, pulmonary fibrosis is more serious than just having a scar in your lung. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.
Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don’t include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it pulmonary fibrosis.
Autoimmune diseases are also called connective tissue diseases, collagen vascular diseases, or rheumatologic diseases. “Auto” means “self” and “immune” refers to your immune system. With autoimmune diseases, your own immune system is attacking your lung. If you have an autoimmune disease, your immune system can cause inflammation and scarring in the lungs. Examples of autoimmune diseases that can cause PF include:
Rheumatoid arthritis
Scleroderma (now called “systemic sclerosis”)
Certain muscle diseases (polymyositis, dermatomyositis, and the anti-synthetase syndrome)
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Genetic/Inherited diseases
Approximately 10-15% of those with an “idiopathic” form of PF have another family member afflicted by the disease. This is called familial pulmonary fibrosis (FPF) or familial interstitial pneumonia (FIP). A number of genes and genetic variants have been identified that are associated with the development pulmonary fibrosis, but frequently genetic tests are not performed when PF is diagnosed, as we are only just beginning to understand the significance of these genetic abnormalities. It is important to discuss the potential risks and benefits of genetic testing with a qualified genetic counselor and your medical provider. To speak with a Certified Genetic Counselor free of charge, contact Janet Talbert, MS, CGC at 800.423.8891, extension 1097.
CLASSIFICATION OF COMMON INTERSTITIAL LUNG DISEASES
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Symptoms
The most common symptoms of PF are cough and shortness of breath. Symptoms may be mild or even absent early in the disease process. As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses patients may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone, or even eating.
Due to a lack of oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have “clubbing” of the fingertips. Clubbing is a thickening of the flesh under the fingernails, causing the nails to curve downward. It is not specific to IPF and occurs in other diseases of the lungs, heart, and liver, and can also be present at birth.
Other common symptoms of pulmonary fibrosis include:
Chronic dry, hacking cough
Fatigue and weakness
Discomfort in the chest
Loss of appetite
Unexplained weight loss
RP – The ones I have big time are the first 3 – but not the last two!
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Pulse Oximetry
A “pulse oximeter” is a device placed on the fingertip or earlobe that indicates the amount of oxygen in the blood. Normally, nearly all of your red blood cells are full of oxygen. When all the red blood cells are carrying oxygen, the blood is called “100% saturated.” A normal saturation level is between 95% – 100% when the test is performed at sea level. Low oxygen saturation values can help your medical professional identify the presence of lung disease. Early on in PF, oxygen levels may be normal while you are resting, but can decrease while exerting yourself. This drop in oxygen saturation (called “de-saturation”) can make you feel breathless. When oxygen levels drop below 89% during exertion, your medical professional may recommend using supplemental oxygen while active.
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GLOSSARY
Alveoli: Tiny air sacs in the lungs where carbon dioxide leaves the bloodstream and oxygen enters the bloodstream.
Bronchoscope: An instrument used for inspecting the airways of the lungs.
Comorbidity: A disease or other medical issue that occurs simultaneously with PF.
Diffuse parenchymal lung diseases (DPLD): Another name for interstitial lung diseases.
Diffusion capacity (DLCO): A measure of the ability of oxygen to diffuse into the bloodstream.
Dyspnea: Difficulty breathing or shortness of breath.
Exacerbation: An episode of rapid decline or the emergence of more severe symptoms.
Fibroproliferation: Relating to the growth of fibroblasts (and fibrous tissue), one of the basic connective tissue cells.
Fibrosis: An increase in fibrous scar tissue.
Forced expiratory volume (FEV1): The amount of air you can blow out in one second, which is measured by spirometry.
Forced vital capacity (FVC): How much air you can blow out of your lungs, which is measured by spirometry.
Gastroesophageal reflux disease (GERD): A regurgitation of stomach acids into the esophagus and throat, causing heartburn, acid indigestion, and possibly injury to the lining of the esophagus. This is also called acid reflux disease.
Hospice care: Palliative care for patients at end-of-life.
Idiopathic: Of unknown cause.
Idiopathic interstitial pneumonias (IIP): A type of interstitial lung disease. Idiopathic pulmonary fibrosis is a type of IIP.
Interstitial lung diseases (ILD): A broad category of over 200 lung diseases that affect the lung interstitium.
Interstitium: The space between the alveoli (air sacs).
Palliative care: Non-curative therapy that treats symptoms and focuses on improving quality of life. It can be received at the same time as curative therapy.
Pathologist: A physician specializing in disease-associated changes in tissue and organs. Pathologists aid in making a medical diagnosis.
Pulmonary: Relating to the lungs.
Pulmonary hypertension: Abnormally high blood pressure in the pulmonary (lung) arteries.
Pulmonologist: A physician specializing in the lungs.
Radiologist: A physician specializing in using radiology tests(e.g., X-rays) to diagnose illness.
Rheumatologist: A physician specializing in rheumatic diseases, which may include arthritis, autoimmune diseases, and joint diseases.
Spirometry: A test that measures the amount of air inhaled and exhaled over time.
Usual interstitial pneumonia (UIP): A specific abnormal radiologic or pathologic pattern of interstitial lung disease.
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ROGER’S STORY
I am fighting for my life because no one else will or can
‘Let food be thy medicine…’ is my general approach but if necessary I use modern drugs.
WARNING – if you have IPF this is for information only – talk to the best medics you can find
as well as complementary approaches. With IPF particularly you have to manage your life, treatments & death.
IT SEEMS EVERY PATIENT AND THE COURSE OF THE DISEASE IS DIFFERENT – March 2015
I have, as all sufferers do, the ‘psychological load’, including the frustration & depression of not knowing if I have 4 weeks or 4 years. The only other guy locally I knew with IPF died last year. He was fitter, slimmer, younger than me – five sets of table tennis he said then suddenly he went from ‘normal’ health to death in 4 weeks.
Ironically as yet the oxygenation and pulse are steady and normal 96% & 65 – weird but long may that continue. It must have something to do with my ‘regime’ ? NB Nothing is straightforward with IPF – no cause and effect is simple.
5,000 were diagnosed in the same year as me – more than 3,000 of them are now dead.
UPS & DOWNS
I was mis-diagnosed – probably for years. My IPF was discovered ‘accidentally’ because I went for a heart scan.
I had a devastating ‘flare-up’ that lasted for 3 months over Christmas – which was a step further down the un-primrose path – in that exhaustion sets in earlier and I need to rest and sleep even more.
The previous Christmas I had 3 months of a devastating virus/bacterial infection….. Had to sleep on my knees lying forward on sofa or bed.
SLEEP APNEA: Thank God my heart consultant referred me to a sleep clinic. I was successfully treated in that they supplied me with ‘the gold standard’ RESMED 9 machine which I have to breath from each night.
MY PHILOSOPHY WHICH I STARTED TO DEVELOP AS SOON AS I WAS DIAGNOSED
STRATEGY 1 If there is anything specific that might help specifically with the IPF do that. STRATEGY 2 If there is anything that might boost your general health do that.
I take occasional take breaks from my two regimes to give my liver & kidneys a rest and to re-…..
STRATEGY 1 If there is anything specific that might help specifically with the IPF do that.
1 The first two specific things I did was to start taking two enzymes Nattokinase and Serrapeptase. Enzyme therapy isn’t accepted but quite a few use it. The second thing in the first year after diagnosis was to consultant a qualified medical herbalist whose primary approach was to reduce inflammation. After a while she added one or two herbs to the medicine she made up for me that are specific for lungs.
I also did some sessions with an acupuncturist.
I also did a session with a horse whisperer who was also a distance healer. Believe me when a doctor looks you in the eye and says, “You have as little as months to live. There is no cure, except a lung transplant and you can’t have one.” and another says “The drugs being tried are arguably worse than the disease. We won’t start poisoning you yet.”
In the shock of those first days, weeks and months after diagnosis you will eat horse-dung sandwiches if you think they would have a slight chance of helping.
The sheer cruelty of the way the NHS treats someone at this point is dreadful, but that is another subject.
The sheer cruelty of aspects of the govt agencies is dreadful – partly because no one helps you – also another story.
Our MP Norman Baker has been brilliant.
THE NOT KNOWING INCLUDES MANY VITAL KEY QUESTIONS
Examples:
How can I slow down the progress of the disease? a. “We don’t know.”
What might cause the disease to accelerate? a. “We don’t have an answer to that.” ETC.
I took on the superhuman task of trying to create, as far as possible, my own therapy. The main problem is that the resources of one desperately ill person are limited. In flare ups or times of viral/bacterial infection I can barely get from bedroom to lounge.
I had two pieces of bad luck – a friend who could have helped with understanding research papers died after 7 years of hell with lung cancer – he was one of the world’s most eminent professors in the field of lung disease!
A family one of whose members died said they would help me – and then changed their minds. Cruel.
I research several hours every week.
STRATEGY 2 If there is anything that might boost your general health do that.
I research & take super-herbs, super-spices and super-foods plus food supplements. – details to follow
WHAT HELPS ME MOST? – DETAILS RE MY PERSONAL PROGRAMME to follow
HOW BAD CAN DRUGS BE? -to follow
WHO CONTROLS OUR DISEASE MODEL OF HEALTH? – to follow
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Every breath is a life- affirmation but I also try to rehearse death with every breath and leave the decision to my Maker – or
as the saying goes, “Trust in God – but first tie your camel.”
PULMONARY FIBROSIS, ‘IPF’, THE ‘NEW’ disease killing thousands every year
PLEASE ask UK govt to stop the neglect. – Some IPF patients say; ‘I wish I had cancer instead’.
UK newspaper overview of IPF – as a patient’s story – HERE
INTRO: Miraculous work is done by the NHS every day but not if you have IPF. IPF – idiopathic pulmonary fibrosis – is an incurable lung disease that results in progressive lack of oxygen, which in turn causes general organ failure & death. IPF is listed as an autoimmune disease. It isn’t contagious. There is no cure.
With IPF according to my consultant, you die, in the UK, on average 33 months from diagnosis. Some die earlier than that, some die less, quickly. 33 months is the median.
15,000 have the disease in the UK. 5,000 die every year. More than 5,000 cases replace those who die.
THE UK GOVT ISN’T TAKING EFFECTIVE ACTION. Compare the 5,000 deaths to road deaths which have fallen from around 5,500 per year in mid 1980s to 1,754 in 2012. IPF deaths just go up steadily up.
Whatever the actions were for road safety we IPF patients want a similar level of action for IPF sufferers.
NO SUPPORT – MONETARY SUPPORT FOR CANCER PATIENTS – frequently a great deal – see HERE – MONETARY SUPPORT FOR IPF PATIENTS – little or next to nothing.
SOME MORE FACTS ABOUT THE GOVERNMENT’S NEGLECT
IPF Idiopathic Pulmonary fibrosis kills 5,000 people each year – that’s more than leukaemia.
UK research spend on IPF is only £600 thousand. On leukaemia alone in UK = £ 32 million. £521 million on cancer as a whole in 2013 – (Cancer Research UK, 2013).
Mortality rates for leukaemia have fallen by almost a fifth in the last 40 years, but increased 600% for IPF
With IPF increasing by more than 5% a year it could be just a few years before you or someone in your family will have it!
Dr Toby Maher, IPF Consultant at Brompton Hospital points out in his BBC article;
‘To the terminally ill patients I have met, and the grieving loved ones have left behind, IPF is every bit as devastating as any cancer.’
Unlike for cancer, there are an inherent lack of integrated services, no Strategic Clinical Network for respiratory diseases, and currently no approved quality standards.
An “urgent” referral for an IPF patient can take months – for cancer, the vast majority are seen within two weeks.
As a result, IPF patients often endure delayed diagnosis, inconsistent care, limited or inadequate information concerning their disease, limited treatment options & a lack of end-of-life palliative care.
Awareness is also far lower: most of you will have heard of leukaemia, but many even within the medical community have never heard of IPF.’
TITLE: “Don’t quarrel with a rose-tree because it cannot sing.” – reality as is-ness, is-ness as reality
I recently had the the news that my life-span will be cut short. I am committed to enjoying every moment of every day, and to being the longest surviving IPF patient.
Looking Mr D squarely in the face is vital but I’m not going to play chess with him, as in a certain Ingmar Bergman film, nor will I Iet him spoil any flash of beauty that comes my way. I acknowledge that the minute, hour and day is set – so be it. (As it is for everyone – but we manage to ignore the fact most of the time.) But today is the first day of a shorter life as much as it is the first day of the rest of the life of anyone with a century to live – so let me breathe in all it’s truth, beauty & goodness!
Fortunately I had discovered the ‘secret of the universe, the ‘secret of all secrets’ a few years ago. I suppose I’m not certain what I should do with it other than try to live up, in some measure, to the challenge that it brings – the challenge of closing the gap between theory & practice! Closing the gap is to ‘Die before you die’ as contemporary Sufi master Sheikh Kabir Helminski reminds us (Chap 22 in his book Living Presence)
The important death is the death, or diminution, of the egoistic lower self in favour of living in the presence of the Self. Here are some of my favourite inspiring quotations that bring together aspects of the two kinds of death:
“Zen in its essence is the art of seeing into the nature of one’s own being, and it points the way from bondage to freedom. By making us drink right from the fountain of life it liberates us from all the yokes under which we finite beings are usually suffering in this world.” D T Suzuki
Another Zen Master in providing a summary of Zen Buddhism said, “No self, no problem.” (Such divine brevity!)
Lao-tzu said, “Embrace death with your whole heart.”
Socrates said, “Practice death.”
“Those who sense the wonder, share in the wonder.” A J Heschel
“What does it matter Oh my Lord if I never meet you – I am already annihilated.” – Sufi
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FROM THE BAHA’I ‘MASTER’ – ‘Abdu’l-Bahá
A friend asked: “How should one look forward to death?” 96
‘Abdu’l-Bahá answered: “How does one look forward to the goal of any journey? With hope and with expectation. It is even so with the end of this earthly journey. In the next world, man will find himself freed from many of the disabilities under which he now suffers. Those who have passed on through death, have a sphere of their own. It is not removed from ours; their work, the work of the Kingdom, is ours; but it is sanctified from what we call ‘time and place.’ Time with us is measured by the sun. When there is no more sunrise, and no more sunset, that kind of time does not exist for man. Those who have ascended have different attributes from those who are still on earth, yet there is no real separation.
“In prayer there is a mingling of station, a mingling of condition. Pray for them as they pray for you! When you do not know it, and are in a receptive attitude, they are able to make suggestions to you, if you are in difficulty. This sometimes happens in sleep. but there is no phenomenal intercourse! That which seems like phenomenal intercourse has another explanation.” The questioner exclaimed; “But I have heard a voice!” ‘Abdu’l-Bahá said: “Yes, that is possible; we hear voices clearly in dreams. It is not with the physical ear that you heard; the spirit of those that have passed on are freed from sense-life, and do not use physical means. It is not possible to put these great matters into human words; the language of man is the language of children, and man’s explanation often leads astray.” 97
Someone present asked how it was that in prayer and meditation the heart often turns with instinctive appeal to some friend who has passed into the next life.
‘Abdu’l-Bahá answered: “It is a law of God’s creation that the weak should lean upon the strong. Those to whom you turn may be the mediators of God’s power to you, even as when on earth. But it is the One Holy Spirit that strengthens all men.” Hereupon another friend referred to the communing of Jesus on the Mount of Transfiguration with Moses and Elijah; and ‘Abdu’l-Bahá said: “The faithful are ever sustained by the presence of the Supreme Concourse. In the Supreme Concourse are Jesus, and Moses, and Elijah, and Bahá’u’lláh, and other supreme Souls: there, also, are the martyrs.”
When asked about the individual persistence of the animal’s personality after death, ‘Abdu’l-Bahá said: “Even the most developed dog has not the immortal soul of the man; yet the dog is perfect in its own place. You do not quarrel with a rose-tree because it cannot sing!” SOURCE http://reference.bahai.org/en/t/ab/ABL/abl-52.html
One theme that cuts across death and death of the ego is reality as in the is-ness of things – don’t quarrel with a rose-tree because it can’t sing!
TAGS: Zen, Buddhism, interfaith, inter-spirituality, interfaith inter-spirituality, death, ego, dying to self, Self, Socrates, ‘Abdu’l-Bahá , Lao-tzu, Heschel, Sufi, is-ness, ontology, today, the secret of the universe, Kabir Helminski, Sufism, prayer, meditation, Baha’i, Jesus, Moses, Elijah, Bahá’u’lláh, salvation, redemption, animals, roses, dogs, birds, perennial philosophy, is-ness, ontology, being, reality,
30th March 2015 NB Latest update is HERE – with lots of info that could be helpful
19th Nov 2014 – have had heart palpitations etc since Christmas. Thank God I asked to see a heart Consultant who sent me to a sleep apnea clinic. Now use a CPAP machine and a mask which pumps compressed air into my lungs to give me periods of deeper sleep.
Idiopathic pulmonary fibrosis may be a disease of recurrent, tractional injury to the periphery of the aging lung: a unifying hypothesis regarding etiology and pathogenesis. – http://www.ncbi.nlm.nih.gov/pubmed/22136526
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27th Oct UPDATE – Saw Consultant last Monday who said I’m in ‘slow decline’, but not much change. Am trying to make it slower!
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UPDATE Oct 7th 2013 – In a few days I will visit the Consultant for the 4th time.
Now is about the time I should be dying if I am completely average – the average is 2 to 3 years from diagnosis.
I have developed a complex regime which I still haven’t got around to describing properly. At present I am doing very little of it as a holiday – and feel better than I have for a very long time. One of the frustrating things about IPF is you know nothing for certain – and no one else knows anything of any importance either. Something seems to have worked for me but out of about 30 things I was doing I have no idea what it was. Upon diagnosis when the Consultant tells you, “No cure, no hope, no effective amelioration,” (and you get the feeling that you are being told to go away and die quietly and please don’t make a mess) – when you hear this you quickly decide to do almost anything.
I think one or more things are working – but it could be just a temporary stabilization. If I knew what if anything is helping I would do more, or take more of it! I had an acupuncture treatment about 6 weeks ago and felt great afterwards – although at about the same time we switched to coconut oil instead of butter/margarine/sunflower oil – so I will go back to the acupuncturist and I will keep on with the coconut oil. Coconut is supposed to be a wonder food – see HERE I can hear the allopathic physicians and other sceptics muttering into their double cheese-burgers. Just in case you think I don’t mean what I say I have tried healing from a horse whisperer, endless vitamins including a supplement made from the stomach lining of silk worms, various kinds of jungle juice. I stand barefoot on the grass of Seaford Head most days, having jogged up the first section of the Head. If you go into anaphylactic shock when you accidentally eat peanuts you have a clear understanding of cause and effect. The knowledge base in terms of cause and effect in IPF is not much above zero. They only agreed on the name for it in the year 2000. If I hadn’t seen the HR scan of my lungs I wouldn’t now believe I have an incurable disease. The one clearly identified symptom a cough seems to have gone, so has the phlegm, so have the strange chest pains.
If you have been keeping me in your thoughts, or have been praying for me or have been visiting your local witch doctor on my behalf – thanks and keep doing it!
I will complete this update after I have seen the consultant.
If this is your first visit here you might want to read what is below.
IMAGE SOURCE – not my lungs but mine look very similar.
WELCOME to this blog which is my journey having been diagnosed with IPF Idiopathic Pulmonary Fibrosis earlier this year – 2012.
The information was casually dropped in my ear by my GP over the phone – followed by NOTHING – not even an offer of a 10min chat! Confirmation came from the consultant on 6th June and again on the 17th October.
The blog is about a) the information I’m collecting and b) reflections, including some (dark) humour, on having my life expectancy so drastically reduced. I hope it is of some help to others.
The consultant thinks that my Pulmonary Fibrosis was caused from asbestos. Beware asbestos – we lived next to an asbestos-roofed barn for 14 years.
THE BAD NEWS as Prognosis – Half of IPF sufferers in the UK die within three years of diagnosis.[18]
I’m dedicated to extending that as far as possible – wish me luck!
In the UK IPF kills about 5,000 people every year[19] (more than leukemia or ovarian cancer).[18] A well known case of IPF was Evel Knievel, a famous stuntman who died of IPF.
What do the doctors know? –
Re the cause – next to nothing!
Re-amelioration – next to nothing except some potentially dangerous drugs – one of the latest they tried was Thalidomide!
Re a Cure – none. Lung transplants in the UK on the NHS aren’t available if you are over 60years old. Not sure I would have one if they were available see HERE
They know some bits but can’t fit it together.
THE GOOD NEWS
Particularly in the earlier stages you can fight back. I’m trying to combine the best of complementary medicine with conventional medicine. Here is my fight-back plan;
PART A – developing the highest possible level of general health – vitality & balance etc.
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To start with I chose a local Medical herbalist Marion Mackonochie because of the information on this page – HERE I want help in avoiding, as far as possible, the dreadful drugs that I will later be offered. My consultant actually said, “We won’t start poisoning you yet!” One of the most recent drugs they tried was Thalidomide (failed!)
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NB I’m telling you for information only what I’m doing. You must make up your own mind – in consultation with your own health professionals.
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PART B – looking for what currently defeats the whole scientific world i.e something to stop and/or reverse IPF. I’m starting with enzyme therapy after the initial period with the medical herbalist. She is also has a developing interest in endobiogenics – see HERE
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If anyone can crack IPF they might get a Nobel Prize!
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I am searching everywhere. I read full-blown scientific papers but I’m not sniffy about getting important ideas from other sources – even the Daily Mail!
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MY ‘PART A’ PROGRAMME
As I understand it I am a ‘fairly-early-stage’ patient. Mine was discovered accidentally when they were looking for heart problems via a scan. I had had a ‘dry cough’, usually the first symptom, for several years. Breathlessness, the second symptom, I don’t have. Many patients are diagnosed later or very late – hence the median life-span from diagnosis of only 2 to 3 years from the time of diagnosis. (American sources tend to give you a bit longer.)
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My personal programme in a little more detail is concentrating on the first of two parts, getting my general health and fitness to as a high a level as I can. I have already made a lot of progress. The second part, that which is aimed specifically at IPF, I will start soon.
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PHYSICALLY
Much attention to diet & food supplements – particularly stuff good for getting a healthy stomach, gut & digestion.
Gym workout/and or ‘power walking’ up to 5 times a week, with emphasis on the aerobic.
Medical herbalism programme – which as I understand is aimed at eliminating inflammation and getting a healthy stomach, gut & digestion.
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SPIRITUALLY & PSYCHOLOGICALLY
Meditation, prayer, humming, EFT, Paul McKenna tapes – anything to keep me positive – not all of them every day!
IPF Idiopathic Pulmonary Fibrosis 