Re: New pulmonologist

[Guest guest]

hi karin,

roger has alpha 1 antitrypsin deficiency.

it's genetic emphysema, so non smokers can get it.

i'll send you some links for info.

not all alphas-what they are called!!-have bronchiectasis

but roger is one of the unlucky ones.

it is the bronch. that causes him the most problems.

your doctor certainly is on the ball as alphas usually

say they've seen an average of 7 doctors before they

find one who asks the right questions and does the

right tests............you're doing well!

how old are you?.........symptoms usually show up

in your 30's or 40's. roger was lucky in that he didn't

notice anything significant until he wasin his early 50's.

however, as with a lot of diseases/conditions one can look back and say, oh yes, i remember feeling so and so.............

i'd say you have a good physician to have recognised the possibility of alpha 1 on your first visit.

sincerely

jennifer in canadaKarin wrote:

Hello, all...I went to see a new pulmonologist yesterday; mine had moved out of state, which really upset me, because I really liked her. This new guy I think will work out well, though. I brought copies of all of my records and handed them over when I got there, and when he walked into the examining room, he opened with, "This will be interesting. All of these files say how lovely and charming you are, so I'm looking forward to seeing if they're right." He spent about a half hour with me, discussing my history. He asked if I had ever been tested for immotile cilia, and I said to the best of my knowledge, no. He also asked if I'd ever been tested for alpha something something deficiency (I forget the exact name- help?), and I said no again. He suggested some blood work to test for that (I

went upstairs afterwards and got that done), we discussed my family history, and we ended with both of us agreeing for me to come back in early November, so he can see what I'm like when I'm not doing fabulously. As he walked out, he added, "Oh, and they were right- you are lovely and charming!" KarinPost your free ad now! Yahoo! Canada Personals

[Guest guest]

Well, I was diagnosed with the bronch at age six, and have been

pretty stable with it over the last almost thirty years. (I'm 32

now.) I also have an IgG deficiency, and never thought about

getting tested for anything else, because I figured that was how I

ended up with the bronch. With my luck, I'll have both. (BTW, the

new pulm thought of the alpha 1 antitrypsin deficiency because I

told him about my maternal grandmother, who had emphysema the last

several years of her life, without ever having smoked or lived with

a smoker.)

Karin

>He spent about a half hour with me, discussing my history. He

asked if I had ever been tested for immotile cilia, and I said to

the best of my knowledge, no. He also asked if I'd ever been tested

for alpha something something deficiency (I forget the exact name-

help?), and I said no again. He suggested some blood work to test

for that (I went upstairs afterwards and got that done), we

discussed my family history, and we ended with both of us agreeing

for me to come back in early November, so he can see what I'm like

when I'm not doing fabulously.

[Guest guest]

so, you're the bronchiectasis expert!!!!!!!!!!!!!!!!!!!!!!!!

that's a long time to become intimately involved with your

lungs and all that junk/gunk.

seriously, though, karin.........sounds like you've hit the right doctor and all will be taken care of and explained etc etc. the right doctor is essential.

as well, i think this list is awesome.

i've sent some links for you~do let me know the results of your blood test.

jennifer in canadaKarin wrote:

Well, I was diagnosed with the bronch at age six, and have been pretty stable with it over the last almost thirty years. (I'm 32 now.) I also have an IgG deficiency, and never thought about getting tested for anything else, because I figured that was how I ended up with the bronch. With my luck, I'll have both. (BTW, the new pulm thought of the alpha 1 antitrypsin deficiency because I told him about my maternal grandmother, who had emphysema the last several years of her life, without ever having smoked or lived with a smoker.)Karin>He spent about a half hour with me, discussing my

history. He asked if I had ever been tested for immotile cilia, and I said to the best of my knowledge, no. He also asked if I'd ever been tested for alpha something something deficiency (I forget the exact name- help?), and I said no again. He suggested some blood work to test for that (I went upstairs afterwards and got that done), we discussed my family history, and we ended with both of us agreeing for me to come back in early November, so he can see what I'm like when I'm not doing fabulously. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

I guess I am about as much an expert as anyone can be, yeah. I

plan on living a long life, so...

Thanks for the links- will check them out tomorrow.

Karin

> >He spent about a half hour with me, discussing my history. He

> asked if I had ever been tested for immotile cilia, and I said to

> the best of my knowledge, no. He also asked if I'd ever been

tested

> for alpha something something deficiency (I forget the exact name-

> help?), and I said no again. He suggested some blood work to test

> for that (I went upstairs afterwards and got that done), we

> discussed my family history, and we ended with both of us agreeing

> for me to come back in early November, so he can see what I'm like

> when I'm not doing fabulously.

>

>

>