My Allergist/Pulmonologist is not taking my Bronchiectasis seriously.

[BabaBunny2]

I have been given Trelegy Elipta inhaler, nothing more, and told that my Broncheictiasis is mild so not to worry about it and dismissed. I am to short of breath to go up our stairs to do laundry, and even walking at a brisk pace is impossible anymore. I have read about therapy for this condition, but it is not possible without a Dr's recommendation, and he says I don't need it!

I feel often like I am suffocating, but I am only helped slightly by my nebulizer that I have had for years, since my diagnosis was asthma.

What do I do, find a new Dr, or wait a while and try again?

[TamBell]

Hi. Oh dear, you sound frustrated. I know that feeling. Even mild bronchiectasis can cause many symptoms that are difficult to deal with, and it seems to depend greatly on so many other factors such as diet, environment, lifestyle, allergies, and other health conditions. Which means that each of us is unique in the way we experience this condition. My respiratory consultant freely states, that so little is known and understood about the condition, that he is learning all the time from his patients.

Which, I believe, is why we must inform doctors exactly how we feel, repeatedly if necessary. From my own experience i have found the knowledge and understanding of bronch. varies greatly among the GPs in the practice I attend.

Frustrating though it may be, I believe that, as sufferers of a rare condition, we must educate the doctors, by telling them exactly how we feel, and not be dismissed or put off. Last year I felt as though i was "banging my head against a wall" until I found a GP who accepted that I knew more about bronchiectasis than he did.

So, if I were you, I would return to your GP practice, and, if possible, talk to a different doctor about your symptoms and your concerns.

Perhaps if you ask to be referred to a respiratory physiotherapist to learn mucous clearing techniques it will help with your breathlessness. I know, personally, that I feel more tired and breathless if I need to clear more phlegm from my lungs.

Six months ago I was tired, weak and breathless, and unable to walk my dog. At the moment I am enjoying walking briskly for 2 to 3 miles a day, and have just joined a badminton class. Ups and downs, highs and lows. Our illness needs self-management, and self-advocacy, which helps us take back control.

There are better days ahead, BaBaBunny. You will get there.

Gill

[Grammyluvs in reply to TamBell]

I agree TamBell. I am from USA and my cat scan showed mild Bronchieactesis and I have asthma. I go to a Pulmonologist at a Hospital of Excellance for Pulmonary. I was sent there because my oxygen levels were dropping to low 80's during exertion. I was placed on oxygen for 4 months and sent to Pulmonary Rehab. I am on 2 inhalers, Spirvea and Advair 500. Plus 2x a day I use my nebuliser with 1st saline and then albuterol. I am doing great but have occasional bouts of breathlessness. My Dr thinks I had an exacerbation of the Bronchieactesis why my oxygen dropped. I found the more I go out and about and stay active, the more energy I build up. It takes awhile. I wish you well.