[Jofac O'Handlin]

Hello Marj,

I had thought of starting a thread on weight loss. Your husband’s sudden loss of weight is concerning as at 6’1″ he is on the border of being clinically underweight.

I was for the greater part of my life a runner, and tried to maintain my weight at a level under 11st 7lbs …. not always successfully.  My height being 5ft. 11″. After being prescribed Nintedanib (OFEV) I gradually declined to the 11 stone level, working to hold it above 10:10. At the end of January I suffered an exacerbation and then needed oxygen for any significant exercise. It all settled down at about 10:10 my weight then in May suddenly dropped to 10:02 and the slowly continues to reduce now 9:12.

My overall muscle bulk has declined and now looking very lean.

I will add that a friend (that i’ll call Bill for anonymity) is on a parallel path with me but older, mid 80’s. He has lost weight and muscle bulk as well. Un be known to either of us until last year or so we were both diagnosed with IPF in 2013, so into our 8th year. I am 6 years on OFEV.

The question for us is —– How can we maintain a healthy weight?

Has anyone suggestions?

I note that your husband is staying active, something that I have tried to do. We have just sold our farm house which was labour intensive. I am concerned that our present terrace house is ‘easy care’ and that I will stagnate. So, lots of gentle walks to maintain some fitness.

Kind regards,

Joe

[Jofac O'Handlin]

Hello,

As I have previously posted the Miami University Hospital started stem cell research back in 2013 /14. The results did not seem to be released.  I did try to keep in touch but got no response.

I see the Kings College group in London is showing positive results with a tiny trial relating to covid induced lung fibrosis. This apparently using the patient’s own red blood cells etc. This may be paralleling research going on in US hospitals.

Intend to write to Kings inquiring about the possible relevance to our IPF disease. I will post any valid response.

Me? At 79 heading for 80 ..whoopee, but going gently downhill. My friend who is 85 is slightly ahead of me in his limitations, and this is supposed to be a rare disease! Both of us are non-smokers. All this against the background of THE virus!

Regards,  Joe

[Jofac O'Handlin]

Hi All, Shortly after I was diagnosed in August 2013, I read about a programme of stem cell treatment by Miami Univetsity Hospital.

As a newly diagnosed relatively fit individual I was keen to participate. Being a British Islander (not strictly U.K.) there would be complications. In February 2014 I did investigate the posibilities but the beaurocracy seemed too difficult. I did continue  at intervals to enquire. I seems that they did get Federal (?) approval for continued research but never heard anything further.

I also found a reference to some earlier Greek research but that was certainly terminated due to unsatisfactory results.

We live in hope. For me it’d better be quick!

Joe

[Jofac O'Handlin]

Hi Jim,

I woke up this morning with a discomfort in my chest, above and to the right of my left nipple and it lingered . I have occasionaly felt it over the yrars but it did not persist.

That got me to look up pulmonary hypertension,  and came across this site, erj.ersjournalx.com  . It is the European Respiratory Journal.  The title: Exercise Induced Pulmonary Hypertention, At Last. Article dated 2015 … by memory!

It refers to the invasive nature of measuring the pulmonary arterial pressure (PAP) so a neglected (my observation) area of research. The abbreviation mPAP is used, mean pulmonary arterial pressure, with the added -CO for cardiac output. This then related to work load, exercise related induced pulmonary hypertension.

It states that attention is now turning to the right ventrical,  after more than half a century of scepticism, and also ‘exercisd induced pulmonary hypertension is finally coming out ‘.

For us the reference to ILD, and the link sith the volume of blood flow (litres/min) against pressure (mmHg), and the comparison with healthy individuals.

The remark which I an sure we can guess at: ‘Exercise induced pulmonary hypertension is associated with decreased exercise capacity and poor prognosis.

Sorry, but we know the journey that we are on. I imagine the consultants and IPF staff really do not wish to tell us the details or mechanisms of our decline. About 2 years ago the consultant vaguely commented about right ventrical changes. As I was still doing slow running training twice per week, I thought that my traction engine of a heart (resting rate 48 to 50) was invulnerable. I do not think that now.

If this sounds pessimistic,  I am not! I have been surprised that I have not become depressed …. don’t understand why not!

I admit to being less than happy  that I am limited in the diy works that were a usual part of life in retirement.

All the best to you, Jim. Also to the rest of our fraternity,

Joe

[Jofac O'Handlin]

Hi Jim and Charlene,

I will begin by saying that I do not know what I am talking about! Jim is right. Yes, it is not generally known, but seemingly there are several ways to measure blood pressures. One we all know about,  the peripheral bp measured with the cuff on the arm.

The one less known, and of interest to us, is the pulminary pressure as driven by the right ventrical of the heart. My understanding is that as our lungs ability declines, the right ventricle works harder to  drive a greater volume of blood through the lungs.

This demand may / will utimately cause deformation and damage to the right ventrical, presumably increasing the risk of heart failure.

Whilst my blood pressure, as an ‘ex-runner’ is excellent for a 79 year old (118 / 75 at rest) I have no idea of the pulminary pressure, as this is not easily or routinely measured. It is the hidden side of our condition.

One notable observation is not my routine bp readings which have remained good, but my heart rate. Over time my resting rate has increased by between 30 and 40%. It makes me think that maybe I shouldn’t try so hard to keep going …. puffing and panting? Maybe just nice and steady!

Regards to all in our community,

Joe

Whether this is the ultimate cause of death, or other organ failure is the question.

[Jofac O'Handlin]

Hi Charlene, and other contributors,

Gosh, is it over a year since this thread started, And what a year!

Well to have survived, and kept sane has been a challenge.

My wife has kept feeding me the homeopathic dose of iron liquid every other day. This in my mind to maintain healthy haemoglobin,  whether this is true or not.

I have retired from several social house groups, and maintaining social distancing as self protection.

Since reading the comments about feratin levels, and since my 3 monthly blood test for liver function is due, I shall request a check on my iron levels to be included, and report back.

Just to note: I suffered an exacerbation at the end of January which made me dependant on O2. I have since made a minor recovery in so far as my sedentary sats levels have recovered to the 92 – 95%, without O2. However, my walking speed and distances  have reduced, needing portable oxygen …. unless I pace myself carefully.

Best wishes to you all, Joe

[Jofac O'Handlin]

Dear Vincent, Another O’H here. I am in the Isle of Man, where our NHS parallels but not the same as that of the UK. Once the hospital triggered the need for O2 following a failed 6 minute walk test, I was overwhelmed with the response. The GP orthorised the prescription, a local pharmacy attended me at home to check the living environment and tutor me on the use of the equipment. The local depot then delivered a surprising number of cylinders, 3 large and 2 lightweight portable. The idea one large for the downstairs living roon, and one upstairs by the bed. The portables to allow some walking activity, and travel (when it was permitted).

Since then they replaced 2 of the large cylinders with concentrators, leaving one for power cut emergencies, and still with the 2 lightweight portables. Replacement cylinders are available on same day, if ordered before 10 am, otherwise 24 hr delivery.

All this free of cost (other than taxation) on the NHS.

Your Trust may / will have different arrangements, but I would hope that they are equal or even better than ours.

As I type my finger Oxometer is indicating 92 in a sedentary (sitting for some time) situation, without O2. Any exertion will drop this into the middle or low 80’s. So oxyygen necessary.

My GP says that low O2 levels, below say 92 are detrimental to the body at large and especially the large organs, and recommends keeping above 96. I perk up the levels several times a day, after exertion, with or after meals (eating and digestion demand effort thus O2) before sleeping and on waking.

The cheap Oxometers are readily, available on line, (anything from £5.00 up to £25) may not be particularly accurate to a couple of % points. I have just bought a second and get a variation of 2% between them. My first one I have had checked against those at the GP’s and was close to their  machines which are supposed to be recalibrated weekly.

Two quick items to conclude.

1. My sister 11 years my senior died from IPF.  She was on private medical care, (also on tne Island) never got fed into tne NHS system, never prescribed home oxygen. Would it have protected her?

2. A friend a few years older is in my situation. He has bought a battery powered portable concentrator (several £1000) to enable him freedom to get exercise and travel.

I am also 79,  diagnosed 7.5 years ago. Did not tell my family for 6 years until the symptoms were likely to become apparant.

Hope this helps.

Regards,

Joe O’Hanlon

[Jofac O'Handlin]

Hi Jim Nox,

I had an ‘exacerbation on the 27-28 January. I’m not as disciplined in tracking the 6 mwt, but was doing 2 to 3 miles around our village in 40 to 50 minutes depending on our route. Suddenly, it all stopped, can only walk at slow pace, and needing oxygen support. A crisis. I’d had oxygen prescribed a year earlier, but refrained from its use.

The exacerbation ocurred as stated, just at the end of January. A week or so later, 5th Feb., I  received my first A.Z. jab. My note is, had these events been reversed I would be asking the same question.

I have had a limited recovery in the sedentary state, but not the active. Oxygen needed for any minor exertion.

Best wishes, Brothers in adversity,

Regards, Joe

[Jofac O'Handlin]

@jillgerber4gmail-com

Reply to Jill,

Yes I have recently suffered  what I can only interpret as a exacerbation. Up until the last few days of  January, my wife would encourage me to take a walk around our village, about 2.5 to 3.5 miles at a reasonable pace, taking it slowly up the hills. This was without O2.

I had realised for some time that I was, during the walks, pushing my O2 stats down to lower than desirable levels. I’d had O2 prescribed a year earlier but after one test run had not used it.

About the 27th Jan, I decided to use O2 on our walk, and it was a disaster.  From not using O2 it seemed that I was now dependant on it! My resting O2 sats had fallen from 92 -95 into the high 80’s.  Trying hyperventilating did not raise the levels sufficiently, so I became very suddenly Oxygen dependant.

I did not go to hospital but did get an emergency appointment with the NHS gp. He seemed to go into overdrive, indicating that I was entering end of life, prescribing Oramorph, and Lorazepam to keep me ‘what’ sedated?

What triggered the exacerbation? I don’t know. There was a mild temperature which forced a covid test (clear), and I was on a penicillin antibiotic at the time which mignt have encouraged a bout of thrush fungal infection.

Treatment. I was prescribed the paliative drugs, which I have so far not taken. Plus counselling (sort of) ending with a DNR Order, great! Follow up today when I have been prescribed 2 oxygen concentrators. Should arrive tomorrow. Our small island does not provide a liquid oxygen option.

Me? I have staged a little recovery I am sitting here without O2, at 92-93 sats. This slight recovery is a great relief to my nose. One side very tender. But my walking now has to be O2 aided, 4 litres. I have been able, as a terminal patient, to coerce my man to permit me an an antibiotic identified in a Swiss trial as a potential aid against IPF progession. Private prescrition self medication, no come back! He then flagged this as a possible conta to the effects of the OFEV my present main medication.

Thanks to all who share their experiences. Warriors in adversity.

Regards, Joe

[Jofac O'Handlin]

Hi Susan and Bill,

I will find out next Thursday what might be offered. I suspect that due to ‘Health and Safety’ issues, and the fact that our island of about 75,000 may not have installed an LOX facility. Fingers crossed! The sudden dependance on O2 has been rather depressing,  but hey, chin up and all that. May take a portable bottle tomorrow and go to a motorcycle trial. I used to be an official, and observer,  but gave up on that 18 months ago, anticipating the inevitable.

Thanks for the support.

Regards Joe.

[Jofac O'Handlin]

Dear Participants,

What a long thread, with much interesting comment.  I was prescibed oxygen in December 2019 following an ‘iffy’ 6 minute walk test. I tried a portable bottle on a walk but found it of little apparant benefit.  So, for the last year we carried on doing our evening walk of between 2.5 and 3 miles. This included a rise and fall of about 120 feet, without oxygen. Admittedly slow up the hills.

Suddenly, at the end of January, 27th, 28th, I hit the buffers. The walk uphill home was a real struggle. What had changed?  The symptom change that I noted was that before the exacerbation my resting O2 reading would be in the 92 – 95 range. Following the exacerbation my resting rate had dropped to the 86 – 89 bracket. So, out came my bottled oxygen. As has been noted on this site, it became necessary to raise the O2 levels into the mid 90’s just to maintain basic good health.

Result is that I am now effectively tied to a gas bottle. It has been quite a change, and a learning process. For example the necessity to use O2 to walk upstairs to bed, and avoid a chronic coughing attack.

As I am in the UK and on the NHS, next week I see the local ‘physiology ‘ department about prescribing an oxygen concentrator. This to minimise the delivery of O2 gas cylinders.

To realise that I am entering a critical period is really sobering. Learning to manage the oxygen, and to continue to get exercise.

Re the nose cannula,  I like others find outdoor exercise in cool temperatures and the oxygen causes my nose to run, thus breathing in through the nose becomes most difficult. My horizons have really shrunk.

Thanks to all participants for your comments.

Regards to all, Joe

[Jofac O'Handlin]

Dear Rosanne,

Thank you so very much for your virtual hug. I fully appreciate the climb of the stairs. I who used to run up several flights of stairs, at work by way of training, now climb one at a time slowly. This to avoid a paroxism of coughing at the top.

Do enjoy your rambles over your fields and the sunsets for as long as you can in the good clean air.. To be friends in adversity is an unfortunate relationship, but thank you for your support.

Kind regards, Joe

 

 

 

[Jofac O'Handlin]

Hello Everyone,

I was prescibed oxygen just over a year ago, both portable and house cylinders. This had been determined by a walk test. I accepted them, tried one of the portables, but felt little value. My wife and I continued our late night walks, 40 to 50 mins. About 3 to 5 km. This was everynight, weather permitting. A good stride along the flat promenades, slow up the hills.

That was until about 10 days ago. Suddenly, I hit the buffers. I had realised in the last couple of walks that maintaining the pace and the uphills was becoming difficult, to the extent that Susan helped by pushing me up the hill home. I tried the ambulatory oxygen which I found unhelpful.

After that evening, I suddenly found the need  for sedentary oxygen. My resting O2 levels fell from the 96 to 92 range, into the 88 to 85 range. Climbing the stairs to bed resulted in a traumatic coughing fit. Is this an exacerbation or what? The latest telecon with the consultant, and visit to the GP indicate that I should prepare myself for the pathway! Such a change in under 2 weeks, and I was really looking forward to getting my covid jabs.

They have prescribed extra medications, but purely paliative to ease the distress. Typing this my levels are 94%/61bpm on No.2 setting on the Oxygen. So, from a wandering happy minstrel to an unhappy cabbage in 2 weeks.

From mountain runner in 2012 to couch potatoe in 2021.  Now constrained to an oxygen cylinder is a real setback.

Some good news may have a buyer for our farm, our home for 55 years!

Good wishes to all contributors, Joe

 

[Jofac O'Handlin]

Hi Charlene,

Sorry, a bit late on this thread. I have not been a N.Y. Resolution type, but this year decided on several, necessary to perk me up. As a lifetime runner / jogger, and now not, to work on a bit of fitness over and above our evening walks. But more than that! So my list:–

1. Fitness, flexibility, and light strength exercises. (Charlene, you will be too yoing to remember the Canadian Air Force 10BX basic exercisers for office staff)

2. Practice the guitar for 15 mins each morning + singing and remembering words!

3. To try and tutor our 2 grand-daughter’s on elementry finance, as our daughter and hubby don’t seem to be conscious of it.

4. To put down on paper my family’s local history over the 20th century. As the baby and last of the 4 kids, and like all here, on a short string. So, Better do it!

Regards to all, Joe

[Jofac O'Handlin]

Thanks Susan.

Yes, attendant risks Of treatments! My Susan has been found to have low bone density, so now treatment for that, as it seems high levels of thyroxin tend to accellerate osteoporosis. Today a visit to her GP, 2 new prescriptions  …..  one of the treatments proposed causes two other risks. So it goes,

Best wishes for the New Year.

Joe

Sorry mediator, off subject, but we mammals are complex beings!

[Jofac O'Handlin]

Hi Susan,

Thanks for your comment. I hadn’t thought of that path, but perhaps should have.

My wife, also a Susan, has recently, just over a year ago, had her thyroid removed. This followed by “ablative” radio-iodine treatment, which may need repeating. My thoughts were along the risk / reward line. What would be the risk of the minimal residue of throid tissue growing a new cancer, against the whole body treatment with a radioactive substance? We follow the medical advice.  Regards, Joe

[Jofac O'Handlin]

Hi Anne,

I beg the question, how would we know if our IPF is not radiation triggered? I have contemplated this as a prospect. I have lived much of my life on an island in the Irish Sea. In my lifetime, now 78, there have been certainly 2 may be 3 occasions when we had food restrictions in place for a significant number of months. The first by recollection was a release by the British Nuclear Establishment in Cumbria only some 50 or 60 miles distance. Was it milk at that time contained strontium 90?

Then the cloud from Chernobyl shut down the consumption of sheep meat from those grazing on the uplands. That restriction was for over one year, again may have been longer. I was puzzled that the fallout seemed only to restrict agriculture from high ground. Surely it covered us all?  As IPF is supposed to be a rare condition I ask myself how do I know personally 3 others (between 2 and 10 years older)  and 2 others though friends, in a population of  75,000? All long term local residents. None of the 5 were cigarette smokers!

I suspect that the disease is multi faceted,  air borne particulates (car brakes, clutches, tyre wear), industrial exposure, workplace environment,  and a genetic pre-disposition.

Ladies and Gentlemen here is wishing you all a ‘contented’ holiday period, and hope for the future.

Regards, Joe.

[Jofac O'Handlin]

Mark,

Thank you for the explanation,  it helps my understanding. I am an IPF sufferer of 7 years, and not producing significant phlegm, yes, some at regular / irregular intervals but not as yet worsening. I take Carbocisteine tablets occasionally on demand if it feels needed to loosen it.

Thank you Elaine for the question.

Joe

[Jofac O'Handlin]

Hi Timothy,  Your efforts to maintain your exercise levels rang a bell with me. As a lifetime runner / jogger / and later a shamber (my definition of a slow jogger!), I try to maintain exercise levels. Now down to walking. I have been prescribed O2 but for the last year avoided its use. My routine is a late night walk around our village, avoiding contact with people! This takes between 30 and 50 mins, between 2 and 3 miles. The hills are now harder, taken much slower. All this without monitoring O2 levels, but presumably dropping to the mid 80’s. As soon as we get in the door I test, and have seen 85’s. Levels soon bounce to the upper 90’s but settle back to my sedentary levels 93 – 94.  I believe that I am on the cusp of ‘having to’ wear O2 when out walking.

I thing that I am lucky on the phlegm front, yes I have it but at the moment handled OK. I take carbocisteine to ease the movement, as and when necessary.

Re  ‘Breo’, your comments are interesting. Not being aware of the drug, I looked up the side effects, and other comments. It seems a very doubtful treatment. Question your medic!

Tumeric? Not heard about its efficacy. How much, how offen, presumably as a curry?

Best wishes, Joe

[Jofac O'Handlin]

Hello All,

I can join the list of those rejected from the Galzpagos trial …. but in my case a failure because I could not achieve several of the threshold values.

This is being done in Liverpool, UK. I attended in November 2019, just ahead of the 5 years cut off time from initial diagnosis.

First reason was a degree of arrythmia. I have had it from time to time over the years, and as a runner more obvious when fitter. Hadn’t had it for months, but did on the test day.

Second was the ‘blow out’ test, which required 6 seconds (I think). All of mine gone in 3 or 4, couldn’t hang on till 6.

Third was the 6 minute walk test. I went into that brim full of confidence. I had practiced outdoors and able, without apparant problems, to do about 600 metres, a short 4 mph. That at a rate that, on the flat, that I felt OK to carry on. In fact where I was testing myself involved a half mile walk there and back. In the test they stopped me at about 100 mtrs as my O2 had dropped below their ‘worry’ value. I felt perfectly happy to go on.

So I never made it onto the trial. I was extremely disappointed, but seeing the preliminary findings with general improvements for those receiving the treatment, even more galling. Might have been given the placebo!

As a result I was prescribed oxygen, which was delivered last December, tried the walking pack, a couple of times but decided to leave it till I felt it essential.

To conclude, have just returned from a 50 minute walk with my wife, about 2.75 miles, including a slow down going up the hill, still without O2. But, I do know that my FVC is declining. So maybe O2 soon …damnation!

Cheers all,

Joe.

[Jofac O'Handlin]

Hi All,

You may all have seen this link. After looking at this article I had a look around and found this link

https://www.ildcollaborative.org/resources/phase-iii-ipf-clinical-trials

Which is a round up of several prospective treatments heading for phase 3 trials.

Again hurry up PLEASE!

Joe

[Jofac O'Handlin]

It looks most promising, hurry up! Like many of us, time is of the essence.

I wonder how difficult PRM151 might be to produce in quantity, and cost?

The necessary adoption by the ‘authorities’, like NICE in the UK, would be a further time delay. We need a fast track system, as in place for the Covid 19 vaccine!  We live in hope. Regards to all, Joe

[Jofac O'Handlin]

Hi, I tried replying to a previous thread on this subject but it didn’t join the thread. In view of that I will keep this brief. I was a runner / jogger over my life. Last year at the age of 77, and almost 6 years from diagnosis, I was obliged to give it up. The hills were hell, even just trying to walk hard.

My wife  now takes responsiblity for dragging me out each evening to walk around our small town. A full lap takes a short hour involving 150 or so feet of rise and fall. Although we have many shorter versions of ou roite. As I am on OFEV only 100’s I do find that the hills cause pressure on the tummy(?) meaning that it is uncomfortable making it back home…. straight to the toilet!

We do things on the way around to make the walk interesting, but despite this I have reached the stage that if I can find an excuse (like rain) we do not go. I know that it is essential to keep going.

One must fight the feeling to become a ‘couch potatoe’, allowing tne breathing to get shallower and shallower., which it will do if not challenged.

Enough for the moment.

Regards all, Joe

[Jofac O'Handlin]

Hi Charline,
Two items:

The first item refers to my comment about ensuring a good iron diet to maintain healthy haemoglobin.  Then I read today‘s PFN article on high iron in the lung tissue of IPF patients. Hey! Let us reduce iron! But then in the same article that reducing iron in the healthy increases the risk of fibrosis. So no, not an answer! What a balancing act. I continue with a homeopathic   level supplement.

Is there any mileage in the control of iron in our systems? Research required.

Sorry, couldn’t find my way back to the heart risks for IPF sufferers, so:

Second is a response to the IPF increase in heart disease risk. I did a check with my PF nurse and cleared my thoughts. As I had kept active, running usually twice per week until last summer, and with a large endurance heart, I erroneously believed that I would be protected from that risk. However, I had not factored into my thinking that as the capacity and gas transfer ability of the lung declines the pulmonary loop has to work harder. Hence higher blood pressure in that loop, not the rest of the body.

The right ventricle of the heart must then must work harder with all  the attendant risks. My exterior blood pressures are very good for my age, better than 120 over 75. That, it seems, will not protect me! I am not medically knowledgeable,  but can now appreciate this problem from a pure engineering point of view. So, I will not have any better protection from heart failure than the next guy, and hence, probably my arrythmia.

You are so young to have this affliction and my heart goes out to you. I am at least in the usual cohort, diagnosed in 2013 at 71, almost 7 years ago. We pray for a cure.

Kind Regards, Joe