Michael Fugler
Forum Replies Created
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I have found that the oxygen suppliers have a great deal of experience can can offer suggestions that might be helpful, they deal with multiple people all day everyday, it is worth a try.
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The short answer is the same as Jeff’s, “start them as soon as you can”, with the same caveat, medical supervision and they are expensive so check your insurance. I am not a medical doctor but I feel like I have graduated to something more than a layman’s opinion as I have studied IPF for hundreds of hours for almost 5 years since my original diagnosis. Once you receive a fibrotic scar, the cell is dead and you don’t know how fast the disease may start progressing, anything you can do to slow it down, is worthy of consideration. The other side of the coin is, the meds come with significant side effects, which you need to be willing to bear, such as nausea, diarrhea, cramping. I have been asking for years if the OFEV I am taking is working and the answer is always, we don’t know, we hope it is slowing the disease down. So, I “bite the bullet” everyday and suffer for the possibility that I am taking the best course of action to fight. I also, ride my bike on days I am too tired to do so, do water aerobics when I don’t want to and swim a few times a week when a nap sounds like a better idea, all to fight and hope the sacrifice is contributing to my still being here. I wish you the best in making your decision.
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That is a great question, you have me on the edge of my seat in anticipation of a reliable reply and most important a timeline. I wish I could provide more information than support!
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IPF since 2018, took 1 year to officially confirm diagnosis and put me on OFEV, not yet on O2, as to coughing, yes, 20+ minutes every morning, I have found (for me) benzanotate (Tessalon perles) do help about 30-60 minutes after I take them, also cough drops, to keep back of throat moist helps keep the post nasal easier to clear from accumulating.
The coughing has gotten worse this year which is almost 4 years into the disease.
Fatigue is a daily battle, mentally it feels like I can sense my body fighting this disease throughout the day, and having been an athlete my whole life, it’s like the feeling after a hard race, your body feels the aches and pains of the struggle to the end of the race and in my case to the end of the day fighting this disease.
I have noticed more recently that anytime I take a shower the mist induces coughing, as well as in kitchen when someone cooking sizzling steaks or anything with the mist coming off the skillet induces coughing, so to interpret I am assuming breathing in these “misty” air particles is a trigger.
I usually have 2-4 coughing spells through the day with the first being first thing in AM after rising from bed and beginning to movie around, most of these coughing spells are somewhat productive (phlegm) initially and once some phlegm comes and is cleared, the coughing calms.
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@babyjane046aol-com , @zitro0101
I was diagnosed with IPF 2018. My Doctor suggested I attend the National Summit in San Antonio November 7, 2019 and I was so appreciative that he told me about it and that I attended with my wife. I learned a lot about my disease from some of the very best medical and scientific minds in the country and was able to procure numerous brochures and attend most of the Presentations and captured photos of all of the many slides these experts used for their presentations. I feel fortunate and lucky to have attended this wonderful event and thought what valuable information for people diagnosed as well as their families to be able to get this information but what about people who didn’t know about it or just couldn’t attend, maybe I could find a way to share this valuable information. So I compiled all of it into a file folder and loaded it up into OneDrive at this link: https://1drv.ms/u/s!Ai2cdOv69daxiwUm9DvWe__jUM4l?e=ZoZhha
Hopefully, if you copy this link and put it in your URL Bar it will get you to these files and presentations and brochures. I hope sharing this information can be helpful for your journey. [email protected] (If you have a problem loading this information I provided my email)
