[jofac-ohandlin]

Dear George,

So very sorry to learn about your problems. I am running a parallel path with you.

Early diagnosis over 10 years ago, so long term gradual loss of abilities. Now on O2 full time. The concentrator on full 5 litres overnight, and supplemental up to 8 during stress during day.

I too am a free thinker. My thought is, it is not the dying, it is the manner of the dying. I have, as many others on this forum experience that feeling heading into panic, inccreasing oxygen and waiting, waiting waiting to gradually recover to relative normality.

I was in excellent health prior to diagnosis in 2013 at the age of 71.Now having reached 82 I need a brain, and lung transplant. My wife disagrees about the brain, …. but I know better! My joke!

Like you I think a quick heart failure would be a fast exit.

We in the Isle of Man are in our local Government considering assisted dying, but it is not legal yet.

A couple of weeks ago I suffered an exacerbation which effectively removed my mobility. I now rely on my wife of almost 55 years for my care. A significant burden for her.

I anticipate that my IPF is familial, as my sister died from it at the age of 85. I was with her the evening before she died. Her brain was active, as I asked her about some family history back to the 1930’s. She was able to gasp out an answer that made sense.

To those on this site, forgive me if I am rambling. Enjoy, as best you can, each day as it comes.

Regards with kind wishes, Joe

[jofac-ohandlin]

Thank you David.

You comfirm the information from a friend with a medical contact.

I am looking at Berberina (?) The material recently featured on this site and the Chinese tests on mice. It is available on vitamin suppliers sites.

I’m at the grasping (gasping) at straws stage!

Thanks again,

Regards to all contributors, Joe

[jofac-ohandlin]

I did not understand the mnemonic UIP, so looked it up and Wiki gave me this:-

The cause of the scarring in UIP may be known (less commonly) or unknown (more commonly). Since the medical term for conditions of unknown cause is “idiopathic”, the clinical term for UIP of unknown cause is idiopathic pulmonary fibrosis (IPF).^[2] Examples of known causes of UIP include connective tissue diseases (primarily rheumatoid arthritis), drug toxicity, chronic hypersensitivity pneumonitis, asbestosis and Hermansky–Pudlak syndrome.^[2]

Therefore are we all UIP & IPF sufferers? Is it the medics confusing us?

So? I am running a parallel path with Merton (? short term memory) diagnosed 2013, now 81 so just made 10 years. Now on 24 hr O2, carry my DNR form, and just had my monthly reminder from my Hospice care nurse, do I need to make closer contact?

Much has been said about keeping as active as possible despite oir declining horizons. INMHO, it is the best way, despite the effort.

Regards to all, Joe

en.m.wikipedia.org

Idiopathic pulmonary fibrosis" - Wikipedia

Idiopathic pulmonary fibrosis" - Wikipedia

[jofac-ohandlin]

Hi Harold, also Ray,

I have been on OFEV since 2015, over 8 years. Started on the 300 mg daily dose, but after six months due to G.I. problems reduced to 200 per day. I have been on that since, but have always had to work at keeping my GI tract under control, lopermide hydrochloride (Imodium?) as necessary. This post is most timely as for the last few days I have chosen to reduce to just one 100 per day. Today, I attempted return to the 200 mg per day. Problems back immediately. The problems are most awkward when I try to exercise. My mid-morning exercise is 400 metres up and down our cul de sac. Today I got 200 metres in and had to head back to the toilet. Two hours later repeating the exercise and the same again.

I look forward to trying the cinnamon diet, hope that it works!

Regards, Joe

[jofac-ohandlin]

Hi Gavin, I feel quite distressed on your behalf by the reapidity in tne progress of your symptoms, especially considering your age. I am old, and have a slow form of IPF, but now reached the distressing oxygen debit zone. I have just had a consultation with a respiratory nurse on breathing techniques. I have found it helpful in minimising the panic sensations but not game changing..

From your language style, I suspect that you might be in the UK and under the NHS. If this is so, I would use the old exression that, ‘the squeaking wheel gets the grease’. Get in there and squeak VERY loudly and get a referral to a respiratory centre of excellence and their  consultants. Best wishes, Joe

 

 

[jofac-ohandlin]

Hello Ehud,

Again with the precursor that I have no medical background, I understand that we have two blood pressures. The external which is measured every time you attend a medical facility.

The second is the pulmonary loop, driven by the right ventricle.  Difficult to monitor. I understand as our lungs capacity shrinks this ventricle comes under stress and is likely to become distended. I have not had it confirmed but my guess is that this stress may increase the likelihood of arrythmia.

I suffered heart rhythm aberrations some years before my diagnosis of IPF. At that time I was a regular runner fit as a flea! Running in the local forests and over the fells, so ignored it!. Now on O2 — 24/7, and 2.5 mph!

Now in my 10th year, OFEV for 8 years (just May 2015), still have arrhythmia! Slightly more intrusive than it has been. Should say now 81 and a bit, what do you expect, eh!

To all, take care and try to keep exercising.  Joe

[jofac-ohandlin]

<p style=”text-align: left;”>Hi Steve, I missed the paper that you refer to, I only caught the study on mice that appeared on this site at the end of February (?). Is it the same paper or a different test. If different do you have a link.</p>
I have will have completed 3 weeks on my trial next Monday. Presently taking 75 mg coated tablets 3 times each day. Building up slowly. Next week propose to increase to 4 x 75 mg per day. Aspirin is not recommended for the elderly. So, at 81 I am proceeding with caution.

I have felt certain limited benefits. The first was reduced abdominal sensations,  possibly the blood viscosity reduction due to the aspirin. I am aware that any small feeling of improvement could be attributed to the placebo effect, psychosomatic!! maybe!   As one with no co-morbidities being in otherwise in good health I am comfortable to try this experiment.

With the spring weather (norther hemisphere), and a new straw to clutch onto, I have felt more positive, after a very low period mid January when due to an exacerbation I was obliged to go onto 24 hour O2.

Regards to all, Joe

 

 

 

 

[jofac-ohandlin]

Hi @christie-patient
You interest in poetry strikes a chord with me. However, I will add a couple of personal limitations. Whilst I am reasonably articulate, I cannot write reasonable verse. I have ideas but have a blockage in constructing verse or poetry.
I do not identify with clever poetry, i.e. that writing which is gramatically, or word wise clever.
For me it needs to tell a story, preferably in rhyme, so ballads really. It has been suggested that the likes of Kipling, and Service were only journalists in rhyme.
As I spent some years working on the west coast of Canada I was introduced to the work of Robert Service. Maybe not a great ‘poet’ but a good story teller, and her made a good living in the telling of the gold rush to the Klondike.
The other aspect to poetry is the recitation, the memory exercise and the vocalistion, as the saying goes, ‘with feeling’.
Theses are great mental exercises, and a distraction from our health concerns.
I could introduce our local bard, T.E.Brown, who in the late 1800’s publised his ‘Forecastle Yarns’. Stories by and about sea farers. I must add that this series is in local dialect!
If your threaad continues, I will add a verse or two of his.
Regards,
Joe

[jofac-ohandlin]

Thanks Chris for the link.
I zam not the best at deciphering statistics! But do I get the comparason that those on treatment effectively maintained capacity, sort of + or – a bit about their base lines? Those on placebos significantly continued their decline in FVC etcbelos their base lines?
Thanks,
Joe

[jofac-ohandlin]

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible trigger. Your reference to the AKAP13 gene is interesting.
I would be most interested in getting gene testing focusing on the IPF associations, but which labs?
Could you provide the links to the phase 3 trials that you refer to?
Cheers, Joe

[jofac-ohandlin]

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible trigger. Your reference to the AKAP13 gene is interesting.
I would be most interested in getting gene testing focusing on the IPF associations, but which labs?
Could you provide the links to the phase 3 trials that you refer to?
Cheers, Joe

[jofac-ohandlin]

Hi All again,
I apologise if my last message sounded rather morbid. It is a record of my experience to date.
One wonders about our vulnerability, what caused this disease in us? With my sister having it, we were 4 siblings, just 2 of us got it. Was it an inherited mutation that gave us a predisposition, maybe the MUC5B gene mutation? History, where we lived? Just 70 km (43 miles) from the Sellafield nuclear research station which had 2 radiation releases, one in 1957 in which local milk was removed from consumption, another in tbe 1970’s, and finally the Chernobyl accident in which local hill sheep were removed from the food chain.
OR, purely other environmental toxic influences? We can only guess, but likely never know.
Keep exercising, eat well, keep smiling,
Regards,
Joe

[jofac-ohandlin]

Hi All, I am not sure that I should add to the contributions already submitted. However, here goes:-
1. I suffer from IPF diagnosed in 2013 now over 9 years. An early diagnosis following a bout of pneumonia caused by a virus that both my wife and I suffered following a visit to a theatre! Incubation chamber!
2. My sister 11, years my senior, was a late diagnosis as (she lead a sedentary lifestyle). Diagnosis in the summer of 2015. She passed on Boxing day 2016 at the age of 85.
I did not advise my family or her of my condition whilst my symptoms were under control, why worry them prematurely? So, I was to witness my sister’s passing. For almost 12 months she suffered a hacking cough, barking all the time. I never told her that her baby brother (me) also had the same disease.
Luckily, I have not yet developed that awful cough. Yes, cough occasionally to clear phlegm.

The fact that we are vulnerable goes without question. Shelagh and family went out with friends to celebrate her 85th birthday, 3 days later she became ill, and in 7 days had gone.
Now the process that I witnessed. Firstly, into hospital checks and antibiotics (ineffective), with transfer to the local hospice. Now for me the hard bit. On the Friday, I had a conversation, asked about family history (1930’s) which she was able to whisper a lucid answer through her oxygen mask. A day later I visited and panting she said, ‘I wish it was over’. She was obviously suffering, how has it been put? Fish on a slab?
Less than a day later she was gone.
Now, what have I to look forward to? Well a couple of weeks ago I got a hint! I did something slightly stupid. Leaving a house group, walking slowly down the driveway,a friend approached from behind in his silent electric Nissan Leaf, so I chose to run ahead of him (I wasa runner in my day) about the 40 yards or so to my car, my friend drove by, then within 30 seconds I was gasping for air, the harder the breathing rate the worse it felt. Was my diaphragm demanding more oxygen than I could supply? It was a very severe reaction. I had not brought my portable oxygen cylinder so had no fall back.
22 months ago, my G.P local issued me with a DNR Notice. So I have no illusions. As we all feel, it is the “manner of our going”.
How long have I got? If I make my 81st in 2 months that’ll be good. Do not expect Christmas ’23.
Regards to all,
Joe

[jofac-ohandlin]

Hi Wesley,
Sorry, but it is necessary to be a bit of a pedant. Time and date, next Thursday is not good enough.
To be constructive, could a text summary be produced of the recommendations that may have surfaced.
As a long term sufferer, 9+ years, and one who is in the end game, I would be interested.
Keep exercising as long as possible, eat anti-oxidants, any other foods to eat or avoid?
Cheers,
Joe

[jofac-ohandlin]

Hi Wesley,
Sorry, but it is necessary to be a bit of a pedant. Time and date, next Thursday is not good enough.
To be constructive, could a text summary be produced of the recommendations that may have surfaced.
As a long term sufferer, 9+ years, and one who is in the end game, I would be interested.
Keep exercising as long as possible, eat anti-oxidants, any other foods to eat or avoid?
Cheers,
Joe

[jofac-ohandlin]

Gene variations or mutations involved in IPF.
In the UK when one signs up to permit any samples taken to be used in research, you fail to understand that you will not get any personalised feed back. The only information received will be that pertinant to your treatment. So, monitoring the progression, and the prescribing (in my case one of the 2) treatments namely OFEV.
Your samples become anonymous so there is no information feedback.
As I am entering the end game, having survived 9 years from diagnosis, and having had an older sister die from IPF, I now feel a strong desire to find out if I have any of the several genetic mutations linked with this disease.
I have seen comments in the various forums on the mutations linked to our disease, but admit failing to take note of them. What I would like help with is, where can I find such a list, and which genetic testing organisations would provide me with the best testing regime / results?
You guidance would be appreciated.
My good wishes ot all,
Joe

[jofac-ohandlin]

Hi Steve,This is one site referring to piceatannol:—
https://pubs.rsc.org/en/content/articlelanding/2016/fo/c6fo00685j
It suggests that it has greater potency than reversatrol. BUT.??
Regards to all,
Joe

[jofac-ohandlin]

Hi Steve,
It seems that we are at about the same stage. My O2 sats are about 92 – 94 at rest (creeping downward). Likewise, puffing at the top of the stairs. Have concentrators in living room and bedroom. Use as and when. Portable O2, which my wife carrys for use uphill, or against the wind. We go out for 20 to 40 mins EVERY night, except windy / rainy conditions! Sometimes I am most reluctant but go anyway. Hanging on in there!
It may be that one clutches at straws, but one hopes.
The article that I read said peanut callus, so shell or skin?. As this was from Chinese research there may be an question over interpretation. An American article on the ‘skins’, with photo to confirm, discussed the possible use of skins to enhance chicken feed. They talked about the antioxidant value and etc., which is of interest to us. One Australian maker of peanut butter seems to use skins in their formulation. Not likely available in the UK.
Cheers, Joe

[jofac-ohandlin]

Hi All, The message to eat healthily is loud and clear and one which I have stuck to, despite the advice to avoid fibre to compensate for OFEV effects on the digestive system. I also take a cocktail of vitamins and nutriants. Keeping on exercising is vital, only walking slowly now.
People have advised taking various alternative therapies. I am investigating the compound recently featured on PFN, namely piceatannol. It is noted as a natually occurring in several foods and berries, notably red grapes, blue berries, passion fruit, and peanuts. I thought peanut butter might be a good option, and a little search revealed, 1. That piceatannol is not readily absorbed by the gut. 2. That piceatannol in the peanut is mostly in the callous(?), the red orange skin? Tests with peanut butter enhanced with the callous (normally a waste used in animal fodder) showed much enhanced levels of piceatannol.
Peanut butter seemed a good option, but is the high callous version available?
My situation, 9 years into it, 7 years on OFEV 2 x 100mg.
Was a runner / jogger till mid 2019. Now on the cusp of O2 for any exercise.
Comment, we talk about oxidation damage, and antioxidants.
How soon should one submit to taking higher oxygen into the very area that is under attack. Just thinking out loud!
Regards to all,
Joe

[jofac-ohandlin]

Hi Nina,
I will say hello.
IPF has been described as a cruel complaint. The progressive nature slowly or quickly robbing one of your physical abilities. We all, on this site, probably wonder what caused the investigation into your health that revealed your diagnosis. Mine was a slow recovery from a bout of pneumonia (that affected my wife as well).
I have found the early stages quite benign, I continued running with gradually reducing ability for six years, eventually retiring when I found the hills too hard and could not keep up with my training partner.
Three futher years on, like today, I was obliged to stop several times walking slowly up a hill that I would hardly have slowed down for 10 years ago.
I think that now I have entered the ‘cruel’ stage.
IPF seems to be a multitude of lung diseases and progress is highly variable.
Enjoy the fact that your symmptoms have not developed in 4 years.
Good luck,and best wishes.
Joe

[jofac-ohandlin]

Hi Natalie, I agree about exercise. My feeling is to try (against the odds) to keep going. A couple of years ago I used to talk about walking up the local headland from the sea side promenade. NOW! I can do it in very short bits with several rest stops, even with my wife pushing, hand in the middle of my back! Result, we do not do the headland very often. The last few days I have felt off colour (heat and atmosphere?) and unwilling to do our evening walk. But, have said that we must keep going, and I have felt the better for it. It would be so easy to give it a miss, and a miss, …. becoming a couch potato! So, it is fight the good fight, as long as possible.
Sorry to hear about the return of your pain having stopped taking prednisone.
Regards, Joe.

[jofac-ohandlin]

Hi Natalie, and other thread contributors.
I live in the Isle of Man, centre of the Irish Sea.
Because of its central location it was an ideal site for a Hyperbaric Chamber. In the ‘good old days’ this was a government facility to provide urgent support to the maritme industry. When this was deemed unnecessary the local leisure industry, and medical authorities combined to retain the basic facility as a charity.
The chamber was enhanced, with a larger chamber and waiting room etc. The medical aspects were developed, gas gangrene, m.s., sport injuries and other conditions were treated.
I had multiple sessions in about 1989 / 90 (free of charge) for trigeminal neuralga, facial pain. Theory that an embolism on a micro blood vessel may put pressure on a nerve. By increasing oxygen in the blood would allow the blood vessel to recover shrinking back reducing the pressure. Didn’t work!
Many years later 2010 / 15, my brother had cancer and also had many sessions over a few years, he believed in its therapeutic benefits. I admitted to being a bit doubtful. We talk about the importance of antioxidants? Red wine, dark chocolate Ho! Ho! .
I now refer you to:-
https://www.ncbi.nlm.nih.gov/books/NBK430743/#:~:text=Oxygen%20is%20vital%20to%20sustaining,oxygen%20toxicity%20or%20oxygen%20poisoning.
This article, 19 pages long, is slightly confusing as it refers to both hyper and hypo-oxygen scenarios. However, in the first 3 pages it emphasises the risks of the toxic effects of hyperbaric oxygen. It appears a risk / reward situation, so who knows?
Note: I am not medically trained, an elderly retired Electrical Engineer. So just my observations.
In a few weeks I will have survived 9 years since the announcement of my IPF. Doubtful about making a full 10th Year, but fingers crossed!
Regards to all,
Joe

[jofac-ohandlin]

Hi Ehud,

Essentially I agree with you, cause and effect.  As in an experiment. I can only wish you well.

Regards to all contributors,  Joe.

[jofac-ohandlin]

Hi @Christie-patient,
My wife, English, had and still has difficulty with local dielect verse, so I can imagine your struggle with Scottish accents.
Here is a piece of Brown’s work. Something we were obliged to learn ‘off by heart’ as 10 year old primary school pupils. Hope you all enjoy, get somethkng from it. Joe

From the narrative poem ‘Betsy Lee’ by T.E. Brown.

‘When childher plays’.

Now the beauty of the thing when childher plays is
The terrible wonderful length the days is.
Up you jumps, and out in the sun.
And you fancy the day will never be done:
And you’re chasin the bumbees hummin so cross
In the hot sweet air among the goss,
Or gath’rin blue-bells, or lookin for eggs,
Or peltin the ducks with their yalla legs,
Or a climbin, and nearly breakin your skulls,
Or a shoutin for divilment after the gulls,
Or a thinkin of nothin, but down at the tide,
Singin out for the happy you feel inside.
That’s the way with the kids, you know,
And the years do come and the years do go.
And when you look back it’s all like a puff,
Happy and over and short enough.

A stanza from an earlier verse in this long narrative poem is occasionally added to the end, usually when read by aan adult.
.
Ah! It woudn’ be bad for some of us,
If we’d never gone furder, never fared wuss,
If we’d never grown up, and never got big,
If we’d never took the brandy swig,
If we were skippin’, scamp’rin’, and cap’rin still
On the sand that lies below the hill,
Crunchin’ its grey ribs with the beat
Of our little patterin’ naked feet.