Samuel Kirton
Forum Replies Created
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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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Millie – Please ensure you have coordinated with the airline in advance. All US carriers have different although similar processes. I will also add that any member of the crew, based solely on their judgement, can deny you boarding if they do not feel it is safe for you to fly.
If you have not had a HAST ( https://www.nationaljewish.org/conditions/tests-procedures/pulmonary-physiology/gas-exchange/high-altitude-simulation-testing-hast) ask your car team if you can be tested prior to your trip to predict what you will need at altitude.
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I agree with Mark!
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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…
pulmonaryfibrosis.org
Find a Support Group | Pulmonary Fibrosis Foundation
Find a pulmonary fibrosis support group near you, or start your own
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Thanks Craig.
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You have captured the benefit of support group participation beautifully.
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Hi Paul – if you encounter someone and during the course of the conversation they tell you they are not an organ donor… what can you say to them about organ donation to have them become a registered organ donor.
Also, transplant centers conducting lung transplants here in the U.S. typically provide both single and double lung transplants. It’s dependent on the patient’s need and the available lungs. One of my regular readers here has had two single-lung transplants years apart. Living lung donor donations are being refined every day. I can recommend this Gift of Life Michigan blog as a good primer on how living donors support lung transplant programs. https://giftoflifemichigan.org/blog/can-a-living-person-donate-a-lung
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Steve,
I have lost track of where in the world you are at the moment. The ones that will do continuous flow and are portable are quite heavy. They are only “portable” because they have wheels.
Sam…
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Thanks for responding. It is my experience that there is no correlation between shortness of breath and oxygen saturation. Saturation levels will drive the need for oxygen. If you have a pulse oximeter check you oxygen saturation when you experience a SOB. If it is below 88% you should be sharing that with your care team.
Your care team may prescribe pulmonary rehabilitation for SOB. When I first went to pulmonary rehab they told me they would teach me to breathe again. I laughed but they were correct.
Sam …
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Hi John. Can I ask why you fear being prescribed oxygen?
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I enjoy primarily HF work.
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Can you share a photo of one of your paintings?