Does Medical Profession Really Understand COPD? | MyCOPDTeam

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Does Medical Profession Really Understand COPD?
A MyCOPDTeam Member asked a question πŸ’­

I got really excited when I was invited to attend a COPD clinic at local surgery, as I think care has been very ad-hoc (when I was diagnosed in 2009 my physio said "I have known people survive 10 years with this condition"). Today when I went to the clinic the first thing the nurse said to me was "who told you you have COPD, you have Bronchietasis that is not COPD. I told her the specialist who diagnosed it and did CT scan told me and showed me the XRays and damage to my lungs!!!! I asked her… read more

posted June 22, 2015
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A MyCOPDTeam Member

I think the answer to your question is, it depends; some do and some don't. Bronchiectasis is included in the general rubric for COPD, though there are variations, and apparently they are not all included in the COPD rubric. Apparently, your pulmonologist thought your variation of bronchiectasis was included, while the nurse didn't. I'd go with the specialist's diagnosis. It sounds as though you're in Great Britain, and I had a chance to talk with Sue Hill, an NHS official who presented at the COPD9 conference in Chicago a couple of weeks ago. She talked about the clinics and what they are intended to do. I think you should make your complaint to the NHS, to let them know that they really need to do a better job of training people to be part of the process. If they drive patients like you away because people were treated insensitively or by people who contradict what the specialists have determined, they aren't going to do a bit of good. If you keep quiet, it'll never improve because they won't know what's wrong.

Jean

posted June 22, 2015
A MyCOPDTeam Member

It is so frustrating to understand and be educated about your disease more than the doctors. I am Alpha 1 Antitrypsine Deficiency a genetic immune disorder which causes lower lobe COPD/Bronchiectasis/Emphysema/cystic fibrosis are just amoung a few lung specific symptomatic diseases. Alpha 1 also causes, panniculitis, newborns with cihrossis of liver, adult and children with liver disease and kidney disease. Regular ER and most Pulmo Docs still don't test or treat lower lobe specific to Alpha 1. So frustrating. Awareness and education is the key to treatment and living with this disease.

posted June 23, 2015
A MyCOPDTeam Member

I feel the same I'm 55 Carl for ins paycheck to pay check caring for a 7 year old can't get off work and when I do go to Dr for breathing they wanna remind me of my female check ups now I need blood pressure tests cause 120/80 30 min later 120/118 ??? No real explanation i can barely afford these visits i have no family here if I go in Hosp to keep my grandson and God forbid i miss work they will start taking my money what do I do I'm only 55 i gotta be here at least 11 more years i have a friend who goes outta here way to help me but she also works and I don't drive or have any other help other than medical for him both parents have Mental & drug issues both out of state now my job will o not allow me 7 day s ahead then I start losing my pay I'm on salary and paycheck to paycheck i don't know what happens God forbid we both get sick i don't think I'm doing this right seems I'm in the wrong plAce for questions

posted March 22, 2018
A MyCOPDTeam Member

I was told I have Bronchietasis. Wow. What are you doing for it? I received no info. I just thought it was a part of copd which i have.

posted June 22, 2015

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