British Lung Foundation
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Friends are gold

I live in a remote areas of the Blue Mountains in Sydney

I have been diagnosed with CVID and Bronchiecstasis

Today I was advised that I need. bronchoscopy next week

As I am two hours drive from the hospital, and have to be there at 7am I would have to leave home at 5am

My best friend who Lives in another State rang me today and wants to pay for accommodation near the hospital the night before the procedure

I just want to share this beautiful gesture with everyone

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A truly wonderful friend. Me thinks you must be a special person too.

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Thanks Suzy6 !

I put great value on friendship and try very hard to remain loyal

Take care hugs

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A true friend indeed Barbie52. Welcome to you by the way and nice to hear from you. Hope all goes well for you next week. Do stay in touch. xxxxx

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Thank you Sassy 59!

I am truly appreciative of this site

Have read some of your posts

Will let you know how it all goes

Hugs

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You are lucky to have such a lovely friend. TAD xx PX my son has just returned from 6 months study in Sydney - he loved the Blue Mountains

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I hope he enjoyed his stay!

The Blue Mountains are really lovely with some really beautiful communities

Unfortunately it is not a good place for me to live any longer due to my health so I am moving to the Central Tablelands

Now wait for the name of the village

Wallerawang

It is an old mining town

I am a volunteer fire fighter and will have to stop that as well

Hugs

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Barbie52 - he loved his stay. He did everything anyone could whilst in Australia!! He love Byron Bay and of course the Barrier Reef. And surprisingly fitted in some studying and even got good results at the end of the semster.

The name of the village is absolutely brilliant - the name alone will bring a smile every day!

Sorry you have to give up the fire fighting - but try to be positive when one door closes, another opens - although sometimes its difficult to see which one is opening! The very best of luck xx

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Tadaw

Thank you for your cheery message

Your son went to all the right places and I hope he will come back again!

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Actually Barbie I live in hope he doesnt want to move out to Oz - he loved the lifestyle! xx

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Hmm I know it is hard on families

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Very good friend but is the appointment maker aware of where you live and the time needed to travel? I have found that just because your Dr and his team know of a patient's health and travel difficulties it often ends up with a totally uninformed person making the appointment. I have rung my consultant's secretary on several such occasions and have acquired far more suitable times.

Obviously I don't know if this would be appropriate in your situation but it may help other thread readers. Regards Rib

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Hi Ribvanrey

My specialist organised it

I am the same distance from other hospitals

It is 45 minutes to the nearest shop for bread and milk

I do appreciate what you are saying and will keep this in mind for physio and IV gamma globulin treatments

Thank you

Hugs

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Hi there ! I have gamma globulin treatment as well. .i was tought to do it myself at home ! I give myself the drip weekly its no trouble and easirt than travelling to hosp because i do it my self it has to be done weekly ,but if i went to hosp it would be monthly. On balance its easier to do myself we go on hollidays and take equipment with me. ! I was tought by hosp how to do it but i dont know if its available in oz. But worth bearing in mind ..its certainly cut down on chest infections and pneumonias. As my y my immune system was non existant before treatment and now getting much improved. Good luck. Sue x

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Hi Sue

Great to hear from you!

I am waiting to get the go ahead as my numbers don't line up but I have just had a comprehensive IgG level test including T and B cells

I should also qualify due to constant infections

It was great to know that it has been a good outcome for you

I will look into home administration

Hugs

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Hi Barbie what a lovely friend,very thoughtful.

We lived in Leura for a while,I love the Mountains,but not the cold winters! We actually moved there from Sydney,when our oldest son was small,& developed asthma badly,after having pneumonia.Our specialist

advised us to go to the upper mountains,I must admit,after being there 3 months,he was a different boy,& never had asthma since! With saying that,met people there,that were asthmatic,& blamed the mountains!

We have now been on the Gold Coast over 20 years,much warmer!

Good luck with the bronchospy next week,let us know how you go.When are you making your move? Is that town North of Lithgow? Have a vague memory of it!

I'd better away to bed,so Goodnight & sweet dreams! xxx

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Hi Wendells

I currently live in Mount Tomah near the Botanic Gardens

We live on a rain forest property which is extremely damp

I absolutely adore Leura

Wallerawang is out past Lithgow prison on the road to Bathurst and Mudgee!

Who in your family has the COPD?

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That's marvellous news. We should all have a friend like that. Good luck for the Bronchoscopy. xx

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Thank you very much poems galore 1

Will let you know how it goes a bit nervous

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Thats lovely Barbie. What a good friend :) What is CVID please? Hope your hospital appointment goes well x

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Hi coughalot 1 (love the name)

CVID is a rare genetic immunological disorder

It is Common Variance Immunological Disorder

The common referring to a common gene mutation but each person with a different outcome

We are sometimes called Zebras

The outcome is that we do not have the gene that protects our wino-pulmonary system so are susceptible to ongoing very painful sinusitis and lung and other infections

The Bronchiecstasis can be a result of CVID or be independent of it

I am having the Bronchoscopy to wash out my

Lungs and get samples

I am waiting to get infusions of Gamma Globulin every 4 weeks, which should support my lack of antibodies and lessen the chance of infections

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Sino not wino

Had a good laugh at that one

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Warm welcome to you Barrie :)

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Just in case predictive text turned Barbie into Barrie thank you so much (:

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You are so right, friends are gold. There is a saying that is so true. "You can choose your friends, you can't choose your family" You are so lucky. However, I have to think that if the shoe was on the other foot, you would be doing exactly the same. Good luck. xxxx

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Thank you mustcarryon

I would love to be there for this friend and others

Sometimes I wonder if COPD is something common to really good people

Also you can feel the goodness of people on this site

Higs

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Aw, wonderful. Friends really are gold.

Emmo

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Yes Emmo count having them as true wealth I do

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Life is rich indeed if you have great friends! Good luck with your appointment, hope all goes well for you. :)

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Thank you Huffpuffer (another great name)

I am nervous but only about something going down my throat when I am struggling to breath as it is

But I am also grateful that I live in a society where I can access this level of medical attentiom

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Thats so good of your friend.good luck

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