Ron Johnson

@drandyhall @steve-dragoo

Dr. Hall, PFTs are quarterly.

Steve, your prayers are much appreciated. God bless.

Update to laser therapy results: @drandyhall

Here are the actual numbers from my last two PFTs, before and after laser therapy to give a more accurate view:

FVC           FEV1           DLCO

1/9/19             1.97           1.73              9.46

4/30/19         2.04          1.72              9.80

These numbers indicate some improve…[Read more]

@charlenemarshall

Opps. Sorry, I did a copy /paste.

I did want to add that my nausea is now gone.

@charlenemarshall,

Charlene,
I started taking Essentialzymes 4 from Young Living when I was on Ofev 150 mg. It helped but not enough. I then moved to Ofev 100 mg which helped a lot more. I still had residual nausea at a very low level but still too much. My wife suggested Allerzyme which is another YL product. Both of these enzymes help the…[Read more]

@drandyhall

I have completed over 48 treatments of laser therapy. Below are the numbers for my two most recent PFTs, one before starting the laser and one after. I am also taking OFEV (100 mg), and multiple supplements for nausea control (successful).

FEV1 % Pred    DLCO % Pred       FVC % Pred

January 9, 2019                                  …[Read more]

Katie ( @katiebagshawe ) , There is a wealth of information on the Internet (Youtube, for example). As you move along you may want to consider using an application that allows you to do post processing to enhance your images. Examples are: “Photo”, if you use Apple computer, or Lightroom. You will eventually want to shoot in Raw format which…[Read more]

@shumita,

See pulmonary fibrosis.org under Announcements regarding caution for stem cell therapy.

I was taking Nexium for GERD, then after heart bypass was moved to Famotadine (OTC is Pepcid at 10mg vs prescription at 20 mg). My pulmonologist does not recommend proton pump type meds for this condition. I continue to have stomach issues, but they are likely caused by the OFEV I now take. I am moving from 150 mg to 100mg to see if that helps.

Charlene @charlenemarshall

Great discussion on flying. I needed that information and hope to fly from TX to CA in August. We may take a short trip before then to test the experience.

Regrading Hawaii: Having been there 3 times here is my assessment: Maui is more populated but has the most diverse options for sightseeing: The coast along Maui…[Read more]

I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and find…[Read more]

Charlene,

I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and…[Read more]

Andy Hall,

Thank you so much for sharing your experiences and your research. I was diagnosed with IPF in October 2017 and have lost ground over the past year but have recently felt much better. I would appreciate a referral for someone who does laser therapy (Class 4) near Ft. Worth, Texas.

Regards, Ron Johnson