Samuel Kirton
Forum Replies Created
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I always wonder how many times we walked past each other at the 2019 Summit.
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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…
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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.
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Charlene,
I recently read an AI result where the engine was provided the results of a PFT and was asked to explain the results. The results were easy to understand and based on 8 years of experience reading my own PFTs it was accurate. I am not ready to turn my healthcare over to AI but I might use it to explain something complex in simpler terms. Good to see you!
Sam…
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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.
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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…
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Antny,
Those are all great accommodations to let you do some of the things you want to do.
Sam…
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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…
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Trust me on this, it will pay off Petey.
Sam…
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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…
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Hi Barbara,
This disease comes with big feelings that get bigger as the disease progresses and with isolation. Do either of you belong to a support group? I can tell you that attending a support group, even if you just listen can be very helpful. There are many virtual support groups available for participation. I am not sure where you are located. If you cannot find a support group please reach out to either of the moderators here… myself or @Charlene Marshall. We will help you find some support group opportunities.
Sam…
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Lor,
The next time you have an appointment with your care team, please tell them you are interested in participating in clinical trials.
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Shelly
My wife wanted to make me a t-shirt telling others my cough was not contagious. I applaud you for traveling as long as you can. It is one way to make every breath count.
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Charlene,
I love that idea. I am going to start sharing that in support groups.
Sam…
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Hi Alam
While I was not transplanted at NYU I did have a double lung transplant in July 2021 at 63 years old. I had been diagnosed in January 2017. Did you have specific questions?
Sam…
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Chuck,
I will share with you that the first interventional drug trial I was considered for did not approve me. The reason was that my IPF was not advanced enough. It was the only trial I was ever turned down for. Make sure your care team knows you are still willing to participate.
Sam…
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Can you search “oxygen tubing cover” on Amazon? I have used spiral wire wraps around corners. Hope you can find a solution.
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It looks like you are in Canada. If that is correct you might try to use the Health Canada Clinical Trials Database. https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/health-canada-clinical-trials-database.html
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Do you recall the documents you signed to participate in the clinical trial? One of those documents should have been the Institutional Review Board plan. There is normally a portion of the information you receive that describes the endpoints for the trial and how information will be released. The NIH has a good explanation of the IRB. https://pmc.ncbi.nlm.nih.gov/articles/PMC4631034/
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You can visit https://clinicaltrials.gov/ to look for clinical trials here in the U.S.
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Hi John,
First, thank you for participating in a trial. As for how long does it take; it depends. I recommend you contact the research coordinator for the center where you participated in the trial. If that is not successful I will post below a link to the government site here in the U.S. where you can research the status of a clinical trial.
Sam…
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Thanks for such a thoughtful response, Elaine.
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Geo,
You can use this tool on the Pulmonary Fibrosis Foundation website to locate a support group: https://www.pulmonaryfibrosis.org/patients-caregivers/medical-and-support-resources/find-a-support-group . Let me know what you find please.
Sam…
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