Carlo De Pellegrin

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.

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]

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]

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

i found this article to be of interest.

Luke

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]

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]

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]

Hi Mark,

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

best wishes,

Luke

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

Luke

@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]

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]

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]

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

Luke R Matthews

My DLCO number was 68% on 12/17/18,  58% on 4/16/19, and 69% on 8/16/19. No explanation was given for the changes. As stated above, maybe yours will go back up. My FVC numbers have been stable.

As a side note I started on Ofev and my side effects became worse each month. I talked to my doctor about switching to Esbriet and now have been on it…[Read more]

Hi Charlene,

This is my first post. I have been following the website since very close to my diagnosis of IPF in September 2018. Before my diagnosis I was cold all the time, even in the high humidity of a summer day in south Alabama. It turns out I have an under active thyroid which is  being treated with meds.  I started my IPF treatment on O…[Read more]