IPF Idiopathic Pulmonary Fibrosis

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


6 Comments

Is this a ray of hope?

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

see http://www.biosciencetechnology.com/search/site/IPF

.lbj.ug.v

Advertisements


6 Comments

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

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

-0-

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

-0-

27th Oct UPDATE – Saw Consultant last Monday who said I’m in ‘slow decline’, but not much change. Am trying to make it slower!

-0-

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.  
.
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!)
.
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.
.
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 
.
If anyone can crack IPF they might get a Nobel Prize!
.
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!
.
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.)
.
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.
.
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.
.
SPIRITUALLY & PSYCHOLOGICALLY
Meditation, prayer, humming, EFT, Paul McKenna tapes – anything to keep me positive – not all of them every day!
.
I will include more detail soon.
.
-0-