@carlo
-
Luke R Matthews replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 1 year, 4 months 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.
-
Luke R Matthews replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 1 year, 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]
-
Luke R Matthews replied to the topic Skin Irritations Caused by Oxygen Cannulas. in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 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]
-
Luke R Matthews replied to the topic Auto Immune in the forum Using Our Forums 1 year, 11 months ago
https://www.frontiersin.org/articles/10.3389/fmed.2019.00209/full
i found this article to be of interest.
Luke
-
Luke R Matthews replied to the topic Auto Immune in the forum Using Our Forums 1 year, 11 months 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]
-
Luke R Matthews's profile was updated 2 years, 3 months ago
-
Luke R Matthews and
Carlo De Pellegrin are now friends 2 years, 3 months ago
-
Luke R Matthews replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years, 3 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]
-
Luke R Matthews replied to the topic Olfactory changes with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 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]
-
Luke R Matthews replied to the topic Trying to Improve Your Memory in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 10 months ago
Hi Mark,
Thank you for posting the Cleveland Clinic article on memory. It is very informative.
best wishes,
Luke
-
Luke R Matthews replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 2 years, 11 months ago
I found your link to the article Dave. Thank you.
Luke
-
Luke R Matthews replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 2 years, 11 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] -
Luke R Matthews replied to the topic Use of medications bought from other countries in the forum Ofev (Nintedanib) 3 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]
-
Luke R Matthews replied to the topic PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As 3 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]
-
Luke R Matthews replied to the topic Commonly Prescribed Medication For Cholesterol May Benefit IPF Patients in the forum Flash Briefings & Podcasts 3 years, 4 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
-
Luke R Matthews replied to the topic PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As 3 years, 9 months ago
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]
-
Luke R Matthews replied to the topic Overheating as a Patient with Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 3 years, 9 months ago
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]
-
Luke R Matthews became a registered member 3 years, 9 months ago