Re: Any Young Adults? Like under 40 but ESP in their 20's? I...

December 31, 2006

Hello,

I am also under 30, just turned 27 actually. I was diagnosed when I was 20y yrs old.

, Adelaide, Australia

Hi ..

IS there anyone else in your family who suffers from lung health related issues? What was your primary dx when you first became lung symptomatic? What meds are you being treated with? Has your dr ever asked you be tested for Alpha1 Antitrypsin Deficiency?

I know not everyone who has lung problems is A1AD..however..there's so so so many who have been improperly dx'd and not recieving the proper treatment. I know we have many young people w/CF..A1AD is closely associated w/those suffering from CF..though not the same..comparable, other than method of treatment.

Sandie inMD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

December 31, 2006

I am still in my 20's, 28yo, but the big 30 is coming closer.

Becki

Hi Becki..ok..I've been sending out mails about the younger generation on our list and their lung symptoms, when they first noticed their symptoms ( age ) etc..I hate being redundant..but is there any other instances of lung related issues in your family..or liver? What was your primary dx upon your first onset of lung symptoms?

Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

January 1, 2007

Hi Sandie,

I was diagnosed with Bronchiectasis and then in 1998 had a right middle lobectomy.

Following that I was taking Seretide and Doryx (Doxycycline) daily. I was then tested and it was confirmed that I had Primary Cilia Dyskinesia. I continued taking those medications until swapping from the Seretide accuhaler to a non-steroid based one - Serevent Accuhaler. I also have Zinnat on hand for when I get a cold, as it generally takes me twice as long to get over a cold which would take a "normal" person only a couple of days.

I was plodding along quite nicely until being hospitalised with mild pneumonia in April 2004. This was just an overnight stay which was good. Then in October I landed myself in the emergency dept with extremely low blood pressure and difficulty in breathing - pneumonia again, but this time nearly a week in hospital. The only reason it wasn't a longer stay was my cousin was getting married and I was determined to go.

Almost 6 months later in June 2005, I ended up back in hospital with that same chest pain. More IV but as soon as I start the IV meds I respond very quickly.

Another 6 months on, this time only a week before Xmas that same familiar pain later me back in hospital. Like before as soon as I start the IV meds I respond quickly but can still get tired very quickly. As my fiancé & I had only been in out 1st home for a few months we had planned to celebrate Xmas day there. Two days before Xmas I was allowed out for the afternoon and my wonderful Mum picked me up and took me home where I sat while she cleaned. (At the time my fiancé was also battling a bout of bronchitis (no link to my probs though). Luckily enough after much convincing that I would take it easy I was allowed to go home for Xmas 2005.

This time it took only 4 months, April 2006, before I was back in hospital on IV meds. I responded quickly and got back to work.

7 weeks later I was back in hospital. This hit me hard as the time gaps had been getting shorter. Again once I started the IV meds I responded quickly and was soon back at work.

After the June 2006 visit my specialist and I decided that my daily medication of 50mg Doryx (Doxycycline) obviously wasn't working and that I should stop taking it. Instead I have Zithromax on hand ready if I need it and as soon as I feel that distinct chest pain of pneumonia I start the Zithromax and call the hospital immediately who will page my specialist.

Since then I have been pretty good. As I am a teacher I have tried not to get myself too stressed out with the end of year and Christmas as it was coming up to the dreaded 6 months since my last hospital visit. So far, so good. I'm just lucky that I recognise the pain and know that I have a couple of hours before I go down hill quickly which is enough time to get a bed in the local private hospital with out having to endure the public hospital waiting room.

I haven't been tested for anything else, but always perform well in my lung function tests.

From: Sunniesback55@...Reply-To: bronchiectasis To: bronchiectasis Subject: Re: Any Young Adults? Like under 40 but ESP in their 20's? I...Date: Mon, 1 Jan 2007 03:23:21 EST

Hello,

I am also under 30, just turned 27 actually. I was diagnosed when I was 20y yrs old.

, Adelaide, Australia

Hi ..

IS there anyone else in your family who suffers from lung health related issues? What was your primary dx when you first became lung symptomatic? What meds are you being treated with? Has your dr ever asked you be tested for Alpha1 Antitrypsin Deficiency?

I know not everyone who has lung problems is A1AD..however..there's so so so many who have been improperly dx'd and not recieving the proper treatment. I know we have many young people w/CF..A1AD is closely associated w/those suffering from CF..though not the same..comparable, other than method of treatment.

Sandie inMD

Never Look Down on SomeoneUnless You're Gonna Help Them Up><< sunnie.jpg >>

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January 1, 2007

I forgot to mention any family history.

There is no history but we suspect my younger sister may have mild bronc. as she always has a productive cough. The testing for PCD is only performed in Sydney, and as we're in Adelaide she is yet to have that test, but has a referral so when she does go to Sydney for a holiday she can also have the testing done.

Reply-To: bronchiectasis To: bronchiectasis Subject: Re: Any Young Adults? Like under 40 but ESP in their 20's? I...Date: Mon, 01 Jan 2007 21:40:09 +1030