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Bob

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@bob-osborne

Just read this article from the Tel Aviv Ichilov Hospital researcher Professor Arbor. A new coronavirus treatment being developed at Tel Aviv’s Ichilov Medical Center has successfully completed phase 1 trials and appears to have helped numerous moderate-to-serious cases of COVID-19 quickly recover from the disease, the hospital said F […] View
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    Bob replied to the topic Covid 19 Millions Suffer but is it a Blessing in Disguise for PF Patients ? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    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…

  • Profile picture of Bob

    Bob replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    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…[Read more]

  • Profile picture of Bob

    Bob replied to the topic IPF without cough in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago

    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.

  • Profile picture of Bob

    Bob replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago

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    The posts on this section seem out of date order by the way.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

  • Profile picture of Bob

    Bob replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 11 months ago

    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…[Read more]

  • Profile picture of Bob

    Bob posted an update 1 year, 11 months ago

    Just read this article from the Tel Aviv Ichilov Hospital researcher Professor Arbor.

    A new coronavirus treatment being developed at Tel Aviv’s Ichilov Medical Center has successfully completed phase 1 trials and appears to have helped numerous moderate-to-serious cases of COVID-19 quickly recover from the disease, the hospital said F…[Read more]

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 11 months ago

      Hello Bob, this is an insightful update by you. I see the path how you are associating the cytokine storm to both diseases; COVID-19 and PF/IPF. I would hope this drug would at least be studied for its affects on fibrotic diseases. Thank you Bob for bringing this to our attention. Take care, Mark.

    • Profile picture of Luke R Matthews
      Luke R Matthews replied 1 year, 11 months ago

      Hello Bob,

      I emailed him when I saw an article about which you write. To my surprise he did respond saying he would keep me informed. However I suspect he is covered in Covid research.

    • Profile picture of Luke R Matthews
      Luke R Matthews replied 1 year, 11 months ago

      Dear Luke
      I think that if might help only if you still have inflammation in the lungs
      If you fibrosis it is too late
      We are developing the drug and d we I’ll take you into
      Consideration in thy e future
      Thanks
      Nadir

    • Profile picture of Luke R Matthews
      Luke R Matthews replied 1 year, 11 months ago

      On 10 Feb 2021, at 20:56, Luke Matthews wrote:

      Dear Dr Adira

      I am a lung patient of Dr Lobo at UNC Health pulmonary clinic Chapel Hill, NC USA. I have been diagnosed with NSIP with autoimmune features causing fibrosing of the lungs. I saw an article on your work with EXO-CD24 and wondered if it might be helpful to ILD patients.

      I know t…[Read more]

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    Bob replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago

    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

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    Bob replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago

    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…[Read more]

  • Profile picture of Bob

    Bob replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 1 month ago

    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

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    Bob replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 1 month ago

    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…[Read more]

  • Profile picture of Bob

    Bob replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 1 month ago

    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.

  • Profile picture of Bob

    Bob replied to the topic Cold Weather and Fatigue for IPF Patients. in the forum Canadians Living with Pulmonary Fibrosis 2 years, 3 months ago

    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

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    Bob replied to the topic Afraid of the unknown in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 3 months ago

    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

  • Profile picture of Bob

    Bob replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 3 months ago

    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…[Read more]

  • Profile picture of Bob

    Bob replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 3 months ago

    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

  • Profile picture of Bob

    Bob replied to the topic Blood pressure and Esbriet in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 4 months ago

    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…[Read more]

  • Profile picture of Bob

    Bob posted an update 2 years, 8 months ago

    (OFEV v Esbriet) Interesting article on the benefits of Ofev as demonstrated by the trial. Is there any demonstrated benefit in taking Ofev over the present dosage of Esbriet?

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 8 months ago

      Hello Bob, when I was diagnosed with ipf my doctor gave me unbiased facts on each of these anti-fibrotic medicines. I chose Ofev because I like to spend time in the sun and outdoors and if took esbriet I might have had to limit this. Your body may have different reactions to the medicines therefore compromising its ability to function they way it…[Read more]

  • Profile picture of Bob

    Bob replied to the topic Book Club in the forum Hobbies & Projects 2 years, 8 months ago

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

    Bob

  • Profile picture of Bob

    Bob posted an update 2 years, 9 months ago

    Early days…very early days, but could Green Tea EGCG actually help IPF lungs?
    Has anyone tried it yet?
    Bob Osborne

  • Profile picture of Bob

    Bob replied to the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 2 years, 11 months ago

    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…[Read more]

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