A Tracheobronchomalacia interview , Addison Disease, Asthma, Vocal Cord Dysfunction.

Dawne's interview


How did all start?

I was being treated for what they thought was worsening asthma, except no treatment would have any impact on this persistent cough, repeated chest infections, breathlessness, etc. It got to the stage I was in hospital for 3 months getting worse and they decided to transfer me to another specialist hospital where they ran a whole range of tests.

Do you already have a diagnosis? How long did it take you to get it?

I got a diagnosis in 2010. It took a few years of being treated ineffectively for what they thought was my asthma and being transferred to a specialist hospital, where they happened to chance upon finding this disease.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I’m being treated with bupivacaine nebulisers and cpap along with a lot of other drugs.

What has been the most useful thing for you so far?

Cpap seems to be the most useful thing to me, and also iv aminophylline during a bad flare up.

What have been your biggest difficulties?

Coming to terms with the changes I have had to make from who I was before.

How has your social and family environment reacted? Have your social or family relationships changed?

Unfortunately my husband of 10 years couldn’t cope with my illness and walked out. Fortunately I have a great support network of family and friends.

What things have you stopped doing?

I have had to stop playing sport, had to give up work, and had to try to do things when I’m not feeling too bad.

What do you think about the future?

I find it a scary prospect as I know how quickly my condition has deteriorated, but I also know everything happens for a reason and haven’t given up hope of a cure being found.

So far, which years have been the best years in your life? What have you done during them?

My early 30’s and late teens were my best years, playing a lot of football and cricket to a high level and playing guitar in the worship group at church (another thing I’m unable to do now).

What would you like to do if you didn’t have your condition?

Would love to go back to working with children, and maybe go to Uganda to work with the orphanages over there.

If you had to describe your life in a sentence, what would it be?

I won’t let my illness define me, there is always something you are able to do, or someone you can inspire.

Finally, what advice would you give to a person in a similar situation?

Don’t give up. If you have to give up things you love to do, try to find something you are able to do to replace it. Keep a sense of purpose in your life. Don’t push your friends and family away, you need them and surprisingly they need you.

Interview Tracheobronchomalacia

Feb 23, 2018

By: Dawne

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