IPF Idiopathic Pulmonary Fibrosis

damn! – I was just getting the hang of being happy!

Dr Death came calling – but I’m still happy!

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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.

http://www.viddler.com/v/c121dcd0

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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.  

What is IPF? – see HERE

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!
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I will include more detail soon.
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Author: Roger - Dr Roger Prentice

Now I write, teach & coach mainly about interfaith as inter-spirituality - and how we can grow closer to our True Self. . As anyone who knows anything about IPF will realize my energy is curtailed - so I am concentrating primarily on 'inter-spirituality'. . In the past I would have said that: . 1) I run courses and give talks at conferences and in universities and colleges in the UK, China, USA, Canada, Scandinavia etc. . 2) I provide materials, outlines and lessons for Schools. . 3) My range of interests include personal development, learning and teaching, photography and film, the arts generally, spirituality and educational practice and theory. . 4) At the same time I continue developing the human-centred studies SunWALK PDS (People Development System) - a whole-person, high-achievement model for individuals, and for use in, NGOs, schools and other organizations. . 5) The key question that continues to animate me and my work remains, "What is it to be fully and positively human?" . Contact me via onesummit AT gmail DOT com (replace At with@ etc.). . All good wishes Roger (Dr Roger Prentice) . For those interested; My first degree is in English and Education. My masters is in Adult and Community Education. My doctorate presented a new holistic meta-model of education called SunWALK.

6 thoughts on “Dr Death came calling – but I’m still happy!

  1. Please leave comments, questions or your own helpful tips or links.

  2. I live in New Mexico, and CT scan radiologist said IPF, two months ago. I heard the no cure, etc. stuff, so, what’s to fight? I love that he stays positive and doing all that he can do. Rather you do or don’t have IPF, “Still Happy” is living the right way😀. Your courage to enjoy is beautiful!

    • Hi Evelyn – thanks for your kind comments and I hear what you say but I try to maximise my general health generally and look for complementary sources & ‘super’ foods. I am also with my Member of Parliament trying to get the UK govt to treat IPF patients better!

      All good wishes

      Roger

      • Hi Roger, my fab father was diagnosed nearly 4years ago,I am an acupuncturist and my partner is a Chinese
        Medical Herbalist, he has been fantastic and his consultant is very keen to know what’s in the herbs, but won’t tell his other patients about acupuncture or herbs. He however, had a hip replacement op before Xmas and then caught this horrible super virus, he has taken a dive and now the doc want him on oxygen, have you tried this, I am worried that it may, whilst easing his breath and the struggle may decrease function. Do you know what herbs u take ? I would be interesting to lease with your team. He is in a very good place emotionally and comes from a place of 49 years of sobriety so his spiritual outlook is calm and positive, I struggle with being professional and accepting to screaming fear inside(like all of us who love those we care for) I would love it if you could give me any tips of the things you have tried to extend and or sooth him. Thank you for reading this
        Much love and respect
        Emma

      • Hi Emma- I have about 40 ‘things’, mainly vitamins etc, most were aimed at maximising general health a few were specific for the lungs. I stopped before Christmas to give my liver and kidneys a rest. I will probably re-start some at some point.

        I will happily tell you more but I would prefer to correspond via email – then we can decide what we want out in the public arena,

        You may have discovered that there are lots of sites for IPF folk, often for relatives and the bereaved. There is a small amount of hard information in oceans of misery which is why I Google specific questions rather than place myself in an online community,

        It is a lonely process for the IPF patient and for carers. One of my bugbears is family members who think I should pull myself together and all will be well and friends who think if I drink comfrey tea or sprinkle fairy dust on my chest or read some crackpot I will be given eternal life on earth.

        Drop me a line on onesummit AT gmail DOT com and I will share a lot more. Please define a bit more what you would like me to comment on.

        All good wishes to you and yours

        Roger

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