[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]

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 have fired three pulmonologist which does not include a large research university who all misdiagnosed my condition as IPF. I finally found a major research university which correctly diagnosed me with ILD with autoimmune features

That is a lot of smart people looking at my series of HRCT scans and not getting it right. I am not telling you that you don’t have IPF. I am telling you to not give up. Every day is a blessing from our Creator. In the meantime talk to your current pulmonologist to see if you can switch to Esbriet. As I said I was on Ofev and I know exactly how you feel about it. I found out later that having a lot of diarrhea can deplete your pre and probiotics. You might want to look into your own research on that.

All the best to you and Jenny. You as well, Mark.

[Luke R Matthews]

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 cigarette smoke. At times my sense of smell seems to be greatly diminished. And at other times it seems to be super heightened to where the smell is almost overwhelming.

I have begun diffusing essential oils in my house and that seems to help. Oils like eucalyptus, or lavender, or peppermint.

Anyway I am glad to know that I am not completely crazy. This website has been such a blessing to me in so many ways by sharing the information that we each have about this disease.

Luke

[Luke R Matthews]

Hi Mark,

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

best wishes,

Luke

[Luke R Matthews]

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

Luke

[Luke R Matthews]

@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 link to the article you mentioned. Also do you take two Capsules twice a day or four capsules all at once? I have been taking mine 2x per day.
Thank you. Luke

[Luke R Matthews]

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 information and phone numbers and websites which help with the cost of the medicines for free. Their number is 877-627-6337.

 

 

[Luke R Matthews]

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 returned to 69%. My FVC number went from 75% to 64% and has returned to 71%.

My girlfriend and I had traveled by airlines at the end of October. We both became ill with some type of upper respiratory symptoms
I went to bed for a few days and felt much better. She never went to bed rest but coughed for eighth to ten weeks. Her doctor even said she was close to having walking pneumonia.

My symptoms were an ever increasing shortness of breath and a non productive cough. I was afraid that my disease was progressing at a faster rate. When they took my lung function test in mid December, they suggested I was having an acute exacerbation. They did an HRCT scan which showed no change since the January 2019 scan. After a discussion of a hospital stay, I was sent home with a high dose of prednisone. After twenty days I began to feel better and hoped that I was not imagining a decrease in shortness of breath. As I said earlier, my appointment last week showed an improvement in my numbers.

I relay this information so that others can know that a reduction in your numbers can be caused by other things than just a progression of this disease. You may not be sleeping well and overly tired, or have a cold, or an upper respiratory infection like I did without really knowing it.

Best Regards to All.

 

 

[Luke R Matthews]

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]

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 for five months with no stomach issues like Ofev. I am very cautious of the sun on Esbriet and do take precautions, so far with no real issues.

[Luke R Matthews]

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 Ofev but could not tolerate it so UAB changed me to Esbriet. I am having very few side effects but I am very cautious of the sun. It almost seems to hurt when it hits my exposed skin. I have always been a person with heavy perspiration. But now it is as you say soaking me through all my clothes. I don’t feel so much that I am overheated though my face does turn red. I do stop and rest and drink plenty of fluids ( combination of water and sports drinks) to replenish. I am on O2 at night. I added a window ac unit in my bedroom and sleep much better with the room cold.

[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.