Luke R Matthews

[Luke R Matthews]

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 disliked the cannula. I don’t know how long this product has been out, my guess is a while, but it is a game changer for me

I posted this on another thread a few weeks back. Hope this helps.

[Luke R Matthews]

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 disliked the cannula. I don’t know how long this product has been out, my guess is a while, but it is a game changer for me.

[Luke R Matthews]

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

i found this article to be of interest.

Luke

[Luke R Matthews]

@caneelbay1

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 to another academic health facility in our local state. When the stem cell people found out that my sister had a brother with IPF, they asked me to come.

They of course did an HRCT scan. I was blown away when the doctor came in and told me my scan is not compatible with IPF. He said my fibrosis was starting at the top of my lungs while IPF starts at the bottom of the lung. He suspected autoimmune or hypersensitivity. After extensive bloodwork it was determined that I have NSIP with autoimmune features. 10-20% of patient have it without displaying any other symptoms like mixed connective or lupus.

I was placed on an immune suppressant Cellcept which can stop but not reverse the fibrosis. After a few months on the medication all of my PFT readings went up.  If I had not gone to see this doctor I would still be on esbriet with no reduction in the inflammation in my lungs which causes fibrosis. I would have declined just like an IPF patient maybe slower though.

I tell you my story so you can know that I was seeing the best doctors in my state and they still got it wrong. They see hundreds of IPF patients a month. Do not trust what your doctor tells you. Trust your gut instincts. This is a very difficult disease to diagnose. I will always have pulmonary fibrosis and may even progress to IPF as my mother and sister, but at least for the meanwhile I feel good and have a new outlook. Thanks to good doctor.

 

[Luke R Matthews]

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.

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