Samuel Kirton
Forum Replies Created
-
All – In my column, https://pulmonaryfibrosisnews.com/columns/when-can-we-start-taking-new-ipf-treatment-jascayd/ , I am collecting questions you have about jascayd. I will be at the Pulmonary Fibrosis Foundation Summit 2025 in Chicago in mid-November. I am going to be looking for the answers to your questions. Feel free to look at the questions others have left and leave your own.
-
There were some important points in the post from PattiPA that I managed to screen capture that are important. I know many are excited about the prospects of red light therapy, so please keep these points in mind.
-
Iron makes a good point, recognizing the value of protein with OFEV. Whether it is a protein drink or a spoonful of peanut butter, protein is a useful tool with OFEV.
Sam…
-
The attached screenshot describes Medicare drug coverage. If you would like to see the entire document, it can be found at https://www.medicare.gov/publications/11109-your-guide-to-medicare-prescription-drug-coverage.pdf
-
All,
Late in the afternoon of October 7, 2025 the FDA approved <b style=”font-family: inherit; font-size: inherit;”>nerandomilast for the treatment of IPF. https://www.medpagetoday.com/pulmonology/generalpulmonary/117841
-
Hi Charlene,
I have often wished there were a non-partisan, independent organization that could fact-check the entire internet, starting with medical cures that are too good to be true. When I was first diagnosed, my wife, Susan, would burst into tears when I walked into the room because of something she read on the internet.
The stem cell treatments cause me the greatest concern as they are unproven and, in some cases, not safe depending on how they are administered. If a patient does pursue stem cell treatment, it may render them ineligible for a lung transplant.
Finally, the miracle cure claims to use an ancient old-world treatment that often preys on a desperate hope for a cure or treatment. If it seems too good to be true, then it very likely is too good to be true.
Sam…
-
Hi RobJ,
I was diagnosed in January 2017 and began taking Esbriet (pirfenidone) in February 2017. I do believe it slowed the progression of my IPF. I began using oxygen in the Fall of 2019 at 2LPM for exercise, and by the Fall of 2020, I was up to 7LPM to walk across the room. My care team talked to me about the side effects of both anti-fibrotics, and I selected Esbriet.
I suggest you make a list of the side effects that bother you and discuss them with your care team. My Esbriet side effect was an extreme sensitivity to the sun. My workaround was long-sleeve shirts, long pants, a good hat, and sunscreen. Those workarounds came in handy post-transplant, when skin cancer risk is increased for many post-transplant patients.
Sam…
-
Here is a link to the column Marisa Wexler wrote on Tyvaso (9/3/2025).
https://pulmonaryfibrosisnews.com/news/tyvaso-boosts-lung-function-ipf-trial-per-top-line-data/
-
I always wonder how many times we walked past each other at the 2019 Summit.
-
Hi Buckeyegoodguy,
Using only the comment you provided above and the info you shared in your profile, I would offer a different viewpoint.
You wrote “he will Not and says He can Not recommend Medical Marijuana . That is because there are no Profits in Med. MJ Big Pharm can not make any $$$$“. Later in your comments you wrote “…and Smoke MMJ Vapes in the evening”.
Anything you are smoking, even using a vape, is going to be contraindicated for IPF. Now, I will agree that everyone’s journey is unique, and the way their body responds is what makes their journey unique. I sense that this is why your doctor will not recommend medical marijuana and has nothing to do with the profit margins for pharma. You are introducing the output of a vape cartridge to your lungs, and vaping carries its own risks for lung injury.
For those considering a transplant, the use of medical marijuana, whether smoked or consumed using a vape, will likely eliminate you from consideration for a transplant. I have noticed the questions on the forms I complete that questions about smoking also reference vaping.
Sam… (edited) -
Hi Vickii,
In addition to what Scherry replied, I recommend you speak with the folks in pulmonary rehabilitation and your mother’s care team. There are so many reasons for pulmonary rehabilitation that can be coded for insurance to make it work. Talk with the team about your concerns and what benefits you think additional sessions would provide.
Sam…
-
Hello all,
The output of portable oxygen concentrators is a debate as old as time. I have read these comments and feel it may be helpful to provide some additional data from the manufacturer. I do own an Inogen G-5 and found it to be sufficient only during the early days of my journey, once supplemental oxygen was prescribed.
– The settings on the Inogen G-5 DO NOT represent liters per minute. They are simply settings.
– Even when using a POC continue to monitor use oxygen saturation, paying attention to your recovery times when your saturation dips below 88%.
– Follow the manufacturer’s recommendations for servicing your POC. Do not simply reset the service reminders.
-Follow this link to the Inogen G-5 User Manual on their site. (https://www.inogen.com/pdf/96-08649-00-01%20B%20_G5_English_User%20Manual-web.pdf?srsltid=AfmBOopktBfwVsngntdDFkS8zasGxA3Q1EMcQ6vh1TlhkMA-b80NW6qs) Go to page 23 of the manual to review the table on the equivalent output at the different settings. At the highest setting of 6 the device delivers 1260ml/min. The formula to convert ml to l is ml/1000. 1260ml/1000 equals 1.26 liters.
The bottom line… if you are prescribed supplemental oxygen and are considering a POC find the table similar to the one on page 23. Share it with your care team and ask if the level is sufficient for your specific condition.
-
Ray,
Will you come back and share your care team’s thoughts on your use of Nerandomilast.
Sam…
-
Hi jross,
If you scroll through the message string, you will see replies in the string from 9/29/25 that were in response to someone else’s reply. They are the latest reply but not added to the end of the string.
I hope this helps.
Sam…
-
Stewart,
Sorry, but are you on Medicare? I do not think I have ever heard of a medical oxygen supplier who did not provide tanks. Perhaps you have equipment from a DME provider. I would recommend asking your pulmonologist who they know in your area who supplies medical-grade oxygen.
I had never considered welding tanks, but I would also run that by your care team before pursuing that approach.
Sam…
-
I wish more people kept their medical history and medications list current on their mobile phone.
-
Hi Ellen,
Before I reply, can I ask how much oxygen you are on?
Sam…
-
Hi Stewart,
Do you have an oxygen supplier? If so, arrange a visit to the local office and try some of the tanks for both size and weight. I typically used E tanks when I walked, but when I needed something with a lower profile, I would use a D tank that could be slipped into a backpack.
Learn the volume of any tank you use. With that info, you can divide the volume by the flow rate to give you a good estimate of how long the tank will last.
Sam…
-
Thanks for sharing that, Susan. My primary care doctor initially thought I had pneumonia and referred me to a pulmonologist in her practice group. She had never seen IPF in her 20+ years in medicine. Fortunately for me, she did get me on the right track to a diagnosis.
-
Dominicka,
US air carriers do not allow pax to bring oxygen tanks on board aircraft. I do not know how much oxygen you require. In the early days of being prescribed supplemental oxygen when my requirement was no more than 2 liters per minute, I used an Inogen G5. Running at the highest setting of 5, it only delivered the equivalent of 1.6 lpm or so of oxygen. I also had to have sufficient batteries to support 1.5x the planned length of the trip. There are larger wheeled concentrators which may deliver up to 5 lpm. You should also know that each airline has its own form, which must be submitted in advance of the flight.
Sam…
-
Antny,
Those are all great accommodations to let you do some of the things you want to do.
Sam…
-
Hi Brian,
My group is Coffee Among Friends. You can find contact information at https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/find-medical-care/care-center-new/coffee-among-friends.
Sam…
-
Trust me on this, it will pay off Petey.
Sam…
-
Hi Marfa,
I am glad you are using your oximeter on the treadmill. It sounds like you have got this down. As for walking outside, on some hotter days here in the mid-Atlantic region days of extreme heat or cold have me looking for an alternative.
Sam…