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Newbie, where do I start?
Hi,
Formally diagnosed after a lung biopsy with IPF, where should I start on the forum? My interests are complementary supplements with the treatments, any holistic approaches to IPF, IPF physical therapy, I am 60 years old, have a wife and four adult children. I still work as an aerospace professional. At the end of the day a flight of stairs leads to shortness of breath. Thanks for any advice in navigating. Be safe.
Timo
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7 Replies
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Hello Tim, I would suggest looking through the forums and related topics. You can comment on a post that interests you or you could start your own topic thread. There are topics on the interests you have mentioned. Take care, mark.
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I’m new at this. Any help would be appreciated. Thanks
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Hello Jane, please peruse the forums and associated topics. You may find a topic that interests you or you may start your own thread. Take care, Mark.
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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) -
Hi Jane and Tim
Welcome, but sorry you have to be here. I am sure you will find enormous help here along with useful tips etc.
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I have found Pulmonary Rehab at my local hospital to be very helpful. A side benefit of these programs is learning how hard you can push yourself without causing undue stress. Daily exercise is good, my goal is 5000 steps daily unless the outdoor temperature is below zero. If a support group for PF is available, join it. You will be able to talk with others who understand what you are facing. I was diagnosed in August, 2017 after a lengthy diagnosis period. You will find that PF affects people differently, so listen carefully, ask many questions and work hard at keeping a positive mental attitude. Lastly, use the Pulmonary Fibrosis Foundation as your data resource for nearly everything you may want to know about the disease. Good luck to you.
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@fischick
All great tips and I couldn’t agree more! Thank you for sharing – I also found/find pulmonary rehabilitation incredibly helpful, along with support groups when they are composed of people varying ages. Positive mental attitude is very important, and always asking questions. Great advice!
Sincerely,
Charlene.
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