Forum Replies Created

  • 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…

  • bob-osborne

    Member
    July 16, 2021 at 6:24 am in reply to: Coughing

    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 weight loss had revealed.

    I am now awaiting a surgeons opinion on two inguinal hernias at least one of which will require surgical intervention before it causes serious problems.

    I believe that this has been caused by my heavy but necessary coughing over the past few years.

     

    Bob Osborne

  • bob-osborne

    Member
    June 22, 2021 at 9:26 am in reply to: IPF without cough

    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.

  • bob-osborne

    Member
    March 30, 2021 at 9:19 am in reply to: Supplemental Oxygen Questions

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    The posts on this section seem out of date order by the way.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

  • bob-osborne

    Member
    March 6, 2021 at 9:30 am in reply to: Supplemental Oxygen Questions

    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 recharged anywhere from the mains in a hotel or the car.

    It’s American in origin, so does anyone have any knowledge of this equipment that would help me make a decision please?

     

    Bob Osborne

     

     

     

     

  • bob-osborne

    Member
    February 12, 2021 at 2:06 pm in reply to: Oxygen

    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

  • bob-osborne

    Member
    February 11, 2021 at 2:48 pm in reply to: Oxygen

    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 from those who have more experience in self supporting use of oxygen?

    Bob

    PS And it is really cold here which seems to make breathing outside even more troublesome.

  • bob-osborne

    Member
    January 6, 2021 at 6:52 am in reply to: Covid vaccine

    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

  • bob-osborne

    Member
    December 26, 2020 at 9:06 am in reply to: Covid vaccine

    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 the requirement to wait 15 minutes before leaving just in case there was a reaction.

    For those who believe that it is in any way risky just take a look at what is happening to those who haven’t been vaccinated. Sadly, we are losing thousands every day who haven’t been treated yet. And those that survive don’t seem to recommend Covid as something to be taken lightly!

    My second booster jab will be on the 5th of January. Lets hope everyone will soon be protected.

    Bob

     

  • bob-osborne

    Member
    December 24, 2020 at 10:52 am in reply to: Covid vaccine

    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.

  • bob-osborne

    Member
    November 5, 2020 at 11:27 am in reply to: Cold Weather and Fatigue for IPF Patients.

    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

  • bob-osborne

    Member
    October 22, 2020 at 9:21 am in reply to: Afraid of the unknown

    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

  • bob-osborne

    Member
    October 14, 2020 at 1:54 pm in reply to: Getting oxygen

    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 doctors treating me so I will see what he/she says.
    Again, my thanks.
    Bob

  • bob-osborne

    Member
    October 13, 2020 at 11:16 am in reply to: Getting oxygen

    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

  • bob-osborne

    Member
    September 29, 2020 at 10:46 am in reply to: Blood pressure and Esbriet

    @gregford

    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 be true to say that Esbriet doesn’t seem to raise blood pressure but perhaps we need more reports from patients who have one of the smaller devices and can monitor their readings.

  • bob-osborne

    Member
    May 28, 2020 at 9:41 am in reply to: Book Club

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

    Bob

  • bob-osborne

    Member
    February 13, 2020 at 12:10 pm in reply to: I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis?

    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 taking one of the proton pump inhibitors that have stopped the reflux but obviously not cured the pulmonary problem.

    I only know of three friends with PF, two of whom were pilots like me and one a female in business who died from complications at age 87 years. None of them, or myself, knew of any family history of IPF.

    So in my case…possibly genetic and then exacerbated by acid reflux?

    Bob

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