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Luke R Matthews

Home Members Luke R Matthews
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@luker

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  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 3 months, 3 weeks ago

    Robert, my DME company gave me  a bottle which is filled with distilled water that straps on top of the concentrator and the O2 goes into that and then the tube to the mask comes out of the side of the bottle.  I am glad you found the Oxymask beneficial to you.

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 10 months, 3 weeks ago

    If anyone dislikes their cannula as much as me, then I want to share my discovery for a replacement. A Canadian company makes an open air mask called Oxymask. It works with a delivery 1-15 liters. You can go to YouTube and search oxymask to see a short video. Or search Southmedic.com. My DME company gave this to me when I told them how must I…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Skin Irritations Caused by Oxygen Cannulas. in the forum Living with Pulmonary Fibrosis: 50+ 11 months ago

    If anyone dislikes their cannula as much as me, then I want to share my discovery for a replacement. A Canadian company makes an open air mask called Oxymask. It works with a delivery 1-15 liters. You can go to YouTube and search oxymask to see a short video. Or search Southmedic.com. My DME company gave this to me when I told them how must I…[Read more]

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    Luke R Matthews replied to the topic Auto Immune in the forum Using Our Forums 11 months, 1 week ago

    https://www.frontiersin.org/articles/10.3389/fmed.2019.00209/full

    i found this article to be of interest.

    Luke

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Auto Immune in the forum Using Our Forums 11 months, 2 weeks ago

    Hello John and All,

    Autoimmune disease can cause scarring of the lungs (pulmonary fibrosis).  NSIP with autoimmune features is one such diagnosis. I was diagnosed with IPF in September 2018 and put on Ofev and then esbriet. My sister has IPF as well. She went to an academic health facility for a stem cell research study. We had both been going…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews's profile was updated 1 year, 2 months ago

  • Profile picture of Luke R Matthews

    Luke R Matthews and Profile picture of Carlo De PellegrinCarlo De Pellegrin are now friends 1 year, 2 months ago

  • Profile picture of Luke R Matthews

    Luke R Matthews posted a new activity comment 1 year, 2 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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  • Profile picture of Luke R Matthews

    Luke R Matthews posted a new activity comment 1 year, 2 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

    View Conversation
  • Profile picture of Luke R Matthews

    Luke R Matthews posted a new activity comment 1 year, 2 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.

    View Conversation
  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    Yes Jenny, I could no longer tolerate Ofev and switched to Esbriet. I at least can tolerate this one somewhat better.

    To Bill, go and get a second opinion. It is easy to diagnose pulmonary fibrosis but difficult to diagnose IPF. Have you had bloodwork done for autoimmune disease? You need to get involved in your case doing research and study. I…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Olfactory changes with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago

    Hi, I have been wanting to start a topic thread on this but I don’t really know how to do that. I did go to google and asked about this topic and one of the links was this thread. I know it is over two years old but I thought I would try posting.

    I have a very similar experience with smells as Lesley. I do sometimes smell smoke, mostly like c…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Trying to Improve Your Memory in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago

    Hi Mark,

    Thank you for posting the Cleveland Clinic article on memory. It is very informative.

    best wishes,

    Luke

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 1 year, 10 months ago

    I found your link to the article Dave. Thank you.

    Luke

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 1 year, 10 months ago

    @Dave @Charlene
    thank you for your post on bioavailability of EGCG. Could you tell me whether you Talked to Healthy Origins or Teavigo concerning taking EGCG without food? I also take Healthy Origins with 150 mg of Teavigo. The directions state to take with a meal. I have already switched to taking it without meals but would be interested in the…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Use of medications bought from other countries in the forum Ofev (Nintedanib) 2 years, 1 month ago

    Hi Charlene

    Both Ofev and Esbriet have programs to help their patients. I believe they will offer financial aid as well. It might be worth it to check with them. Ofev’s program is called Open Doors. The number is 866-673-6366. Esbriet is called Esbriet Inspirstion 844-693-7274

    Walgreens Alliance Specialty Drugs has helped me  by providing in…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As 2 years, 3 months ago

    I had posted earlier about my experience with a reduction in DLCO Numbers that bounced back. Since that post I have experienced a reduction in my DLCO and my FVC Number. Now, Two months since those numbers were recorded they have essentially bounced back to previous levels. In December my DLCO number decreased from 69% to 49%. Last week it…[Read more]

  • Profile picture of Luke R Matthews

    Luke R Matthews replied to the topic Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients in the forum Flash Briefings & Podcasts 2 years, 3 months ago

    Hi, does anyone know what strength the statins were when given in the study to see a reduction in the fibroblasts.

    Luke R Matthews

  • Profile picture of janis gorsline

    janis gorsline and Profile picture of Luke R MatthewsLuke R Matthews are now friends 2 years, 3 months ago

  • Profile picture of Andrew (Randy) Hicks

    Andrew (Randy) Hicks and Profile picture of Luke R MatthewsLuke R Matthews are now friends 2 years, 3 months ago

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