well wishful thinking...i did have that surgery

[Guest guest]

at 13 years old...rt middle lobe at 4 and lt lobe

and lingular at 13 years old...i kept getting pneumonia's.

sinus surgery and hearing loss...my doctors said to move

from seattle to phx..

i found out in arizona, at the univ of az at 48, my cilia

does not work, and at 21 in phx...my immune system does not

work, so started to get igg shots, and now ivig...

i am 65...on oxygen, Tobi, daily suctioning..

yes there are some who can have lung surgery and i have met them

in arizona...the one's i met moved here in their teens...they

are all well , married and have children...actually they were

wondering why i was still stick...i was born with a collapsed

lung, right middle lobe..part of pcd also.

www.pcdfoundation.org

[Guest guest]

Could you explain what is beneficial in the Arizona climate as opposed to the Seattle climate? I live in Australia so I am not that familiar with the climatic regions of the States.

I live in Melbourne & have often wondered if moving to a different climate would help me. I feel a bit guilty saying this but the dreadful drought that we have been experiencing here has - I think - been beneficial to my health.

Keep well everyone. Theresa

Subject: well wishful thinking...i did have that surgeryTo: bronchiectasis Received: Tuesday, 6 October, 2009, 8:50 AM

at 13 years old...rt middle lobe at 4 and lt lobeand lingular at 13 years old...i kept getting pneumonia's.sinus surgery and hearing loss...my doctors said to movefrom seattle to phx..i found out in arizona, at the univ of az at 48, my ciliadoes not work, and at 21 in phx...my immune system does notwork, so started to get igg shots, and now ivig...i am 65...on oxygen, Tobi, daily suctioning..yes there are some who can have lung surgery and i have met themin arizona...the one's i met moved here in their teens...they are all well , married and have children...actually they were wondering why i was still stick...i was born with a collapsedlung, right middle lobe..part of pcd also.www.pcdfoundation. org

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[Guest guest]

I forgot to mention that many people with lung problems move to the drier Southwest or Intermountain regions as they find it helps their asthma or other lung issues that are affected by too much dampness.

Kay

well wishful thinking...i did have that surgeryTo: bronchiectasis Received: Tuesday, 6 October, 2009, 8:50 AM

at 13 years old...rt middle lobe at 4 and lt lobeand lingular at 13 years old...i kept getting pneumonia's.sinus surgery and hearing loss...my doctors said to movefrom seattle to phx..i found out in arizona, at the univ of az at 48, my ciliadoes not work, and at 21 in phx...my immune system does notwork, so started to get igg shots, and now ivig...i am 65...on oxygen, Tobi, daily suctioning..yes there are some who can have lung surgery and i have met themin arizona...the one's i met moved here in their teens...they are all well , married and have children...actually they were wondering why i was still stick...i was born with a collapsedlung, right middle lobe..part of pcd also.www.pcdfoundation. org

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[Guest guest]

Hi ,

What is pcd? I can relate to so much of your story – I’ve felt more & more like an oddity even in the oddity world of bronch, seemingly no-one else who ‘got it’ so young – at birth, just didn’t get better, one thing compounding into another making things worse...ie apparently L lung deformed due to same cause for cleft palate, whooping cough, pneumonia collapsed lung etc, then heaps surgeries....not good combos, hey. I was 18 when dx widespread inoperable bronch, no cilia (well gone, I gather), poor immune resistance... Interesting that since joining this group and doing more research it seems widespread, ‘full-blown’ bronch takes a decade or more to develop – so I guess we must have had something going on in vitro!! Lucky us!! (not, LOL!)

How is the daily suctioning done, do you mean as in a bronchoscopy? I asked my specialist about doing one again – like just vacuum all the gunk out but declined, didn’t seem to think it was a good idea, didn’t work that way. How long have you been having Tobramycin – it can affect hearing and balance...(in other post sent with this). And what are igg shots? Pardon my ignorance, much of what you describe is new to me, I hope you don’t mind. It sounds like you have had many – and still – tough times with this bronch thing...

I’ve lived in cold-temperate climates, cool to mild-temperate, mediterranean (ei hot dry summer, cold wet winters), sub tropical and tropics. The hot harsh dry summers I felt nearly killed me equally as the bitterly damp cold winters...my 3rd and last pneumonia was in that that climate! By far I favour the tropics, less temp range, winters about as idyllic as poss, just the wet season can be hard to cope with, but where is perfect?

joy

[Guest guest]

Joy

A couple of ENT docs thought I might have had PCD but because I have children they decided that it was unlikely. I had a saccharin test which showed a delay but he said the sinusitis my have caused that. In Australia they don't do the sort of testing that is done in the US to diagnose PCD. They argue that the treatment is the same for bronch anyway. Also my heart is on the left where it is supposed top be.

Keep well everyone. Theresa

Subject: Re: well wishful thinking...i did have that surgeryTo: "bronchiectasis " <bronchiectasis >Received: Friday, 9 October, 2009, 7:32 PM

Hi ,What is pcd? I can relate to so much of your story – I’ve felt more & more like an oddity even in the oddity world of bronch, seemingly no-one else who ‘got it’ so young – at birth, just didn’t get better, one thing compounding into another making things worse...ie apparently L lung deformed due to same cause for cleft palate, whooping cough, pneumonia collapsed lung etc, then heaps surgeries... .not good combos, hey. I was 18 when dx widespread inoperable bronch, no cilia (well gone, I gather), poor immune resistance.. . Interesting that since joining this group and doing more research it seems widespread, ‘full-blown’ bronch takes a decade or more to develop – so I guess we must have had something going on in vitro!! Lucky us!! (not, LOL!)How is the daily suctioning done, do you mean as in a bronchoscopy?

I asked my specialist about doing one again – like just vacuum all the gunk out but declined, didn’t seem to think it was a good idea, didn’t work that way. How long have you been having Tobramycin – it can affect hearing and balance...(in other post sent with this). And what are igg shots? Pardon my ignorance, much of what you describe is new to me, I hope you don’t mind. It sounds like you have had many – and still – tough times with this bronch thing...I’ve lived in cold-temperate climates, cool to mild-temperate, mediterranean (ei hot dry summer, cold wet winters), sub tropical and tropics. The hot harsh dry summers I felt nearly killed me equally as the bitterly damp cold winters...my 3rd and last pneumonia was in that that climate! By far I favour the tropics, less temp range, winters about as idyllic as poss, just the wet season can be hard to cope with, but where is

perfect?joy

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