Discussions
Discussions
CodyJames Check-In 03/04/2026
Hi I’m new here. I was born with COPD due to complications at birth. I’m 38 years old. I went 30 years without seeing a pulmonologist but this past Christmas I got pneumonia and it was suggested I go see one. A week ago I had a pulmonary function test and a ct scan that said I had severe bronchiectisis and a FEV1 of 20%. The first time meeting the pulmonologist he told me I would be on a ventilator in 4-5 years and referred me to a lung transplant facility. I was shocked. And now I’m terrified I’m gonna die in a couple years
Replies
Hello! I am glad you found this site. I am sorry to read about your current situation. Is your doctor at a good research hospital? Do you have the energy to get a 2nd opinion? Being terrified is tough. When is your appointment with the lung transplant specialist? In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand your concerns. You can also email us at contactus@bronchandntm.orgto get more information about your current situation.Our Ambassadors can’t provide medical advice but may be able to assist you with additional information and resources.
Below is a booklet on Bronchiectasis https://www.bronchiectasisandntminitiative.org/Portals/0/Files/All_About_Bronchiectasis.pdf
Information for newly diagnosed patients: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed
Welcome to our community, CodyJames!
My pulmonologist is a small office in Merritt island Florida, but he also works at cape canaveral hospital. I’m waiting for the call from
The lung transplant people.
Hello! I hope that the transplant team calls you soon and is able to answer your questions. Please feel free to call the number in the post above if you want support. We are not transplant experts but we know a lot about Bronchiectasis.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
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