London’s Guy’s & St Thomas’s experiment with Covid lung scarred patients seems to offer some help. Can we expect that the trial will not be limited to just Covid victims but will also include the IPF patients who have been in the awaiting treatment queue for many years…

A word of caution about this coughing problem.

I have the early morning coughing problem to dislodge mucus and stuff from the back of my throat and the roof of my mouth and have had the problem for a few years before IPF diagnosis in 2015.

During a recent angiogram an observant nurse noticed two small swellings in my groin area that my… Read more

Now in my 6th year since diagnosis. Never had the IPF cough but needed some coughing early morning to dislodge mucus in throat and roof of mouth. This is hard work and takes 10 to 15 minutes but on some mornings I don’t need to do this.

Many thanks for the information about the Inogen G5, particularly Jim and Bill.

The posts on this section seem out of date order by the way.

I now have the G5 delivered by an NHS supplier and am learning how to use it. It should certainly give me mobility.

 

Bob Osborne

Just getting to grips with the liquid oxygen flask, but still want to travel around the UK. I need 1 litre per minute at night and 3 litres when exercising in the day.

Looking at the Inogen one G5 Battery powered concentrator. Expensive, but it seems to be light, delivers the oxygen for long periods and, unlike the Liquid oxygen, can be… Read more

Susan and Bill,

Many thanks for your advice. This explains a lot to me. I have the Oxygen people coming back on Monday to train me a little on the types of Canula!

 

Bob

Hi,

I have just started to use liquid oxygen from a flask for moving around. It was supplied with a nose canula but I seem only to breath properly through my mouth as my nose just can’t let enough oxy in.  I have just bought a small face mask to use and that seems to deliver oxygen to my lungs a lot more efficiently.

Any comments or tips… Read more

Back to the UK situation: I had my second Pfizer jab last night. Slightly bruised feeling in upper arm today but no other symptoms. I hear that I will have a high degree of cover in just 7 days post the second vaccination. So far some 1.5 million treated leaving just sixty million, including my wife, to treat!

Bob

Well Charlene, the jab itself was a total non-event. I didn’t feel a thing and only had a slightly bruised feeling in the upper arm for a day following.

The big part of the event for my small town Doctor’s office was fitting in a large number of elderly in the line, the difficulty in uncovering an upper arm wearing winter clothing and… Read more

As an over 80 (just!) and with IPF Brit I had my first jab on the 15th of December with the booster booked for the 5th of January.

Has anyone considered or researched the effects of atmospheric pressure on us IPF’rs? In the Northern climates it can be clear and cold or clear and hot when under a high pressure situation but the increased barometric pressure seems to help my breathing a little. It is of course like being at sea level rather than up a very tall mountain.

Bob

Hi Jay,
Sorry to hear about your condition. This could be caused by several conditions and lung disease is one of them but there are others such as cardiac problems.
You need to find a really good physician for a full investigation.
Let us know how you get on.

Bob

Charlene, Doug, Randy and Bob:
Many thanks for you kind words and suggestions. I was jumping the gun somewhat as I haven’t applied for portable oxygen yet, but was anticipating hearing that I wouldn’t be able to get the tests because of the Covid 19 uptake.
I will be having a “by computer screen” consult in two weeks with one of the… Read more

I fully understand the value of these tests, but at present it is virtually impossible to be allowed to take them in this Covid19 environment.
So what is “plan B” ? that will enable our physician to prescribe
supplemental or ambulatory oxygen for those who need it
…or do we have to buy it on the open market?

Bob Osborne

I am now 80 years old. My occupation before retirement required frequent blood pressure readings. My pressures always showed 120 over 80 and now in retirement and on three Esbriets daily (spread over the waking hours …breakfast, lunch and evening) my pressures when relaxed are usually 110 or slightly less over 70 or slightly less.

It might… Read more

…and don’t forget Adam Kay’s second book:
“T’was the night before Christmas”

Bob

When you read the word “Idiopathic” for your disease it’s bound to raise questions in your mind.

In my case, diagnosis at age 75 (I thought, as I was becoming short of breath, that I needed a new heart valve !) and now coming up to age 80 I think that my then acid reflux on a daily basis may have triggered it. Since diagnosis I have been… Read more

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