Re: 's clinic visit/and a PFT question

[Guest guest]

Hi ,

Great news on Josh's check up, and congratulations to you for getting

him into the habit of taking information to the doctor! I bet that

made him feel great to follow what's going on.

::::whispering:::: But, psssst! I don't understand why Grandmom Bev is

talking about sperm donors in reply to your post. Hmmm... maybe

there's *a whole lot* more that your 14-year old Josh isn't confessing

to you!! )

One more thing... is Josh on Cipro because of a recent flare up or

does his doctor keep him on this all the time?

Last question -- it's about PFTs -- A CF doctor in Chicago brought

this to my attention several weeks ago.

This doctor calls PFTs the " random number generator " (and I agree!).

He pointed out that people have lower PFTs in the morning, and

higher PFTs in the afternoon.

He said an exception to this rule would be a person who sleeps late in

the morning, then has a very early afternoon clinic appointment. In

this case, their early afternoon PFTs are *really* their morning PFTs

because they slept so late. (Hope that makes sense the way I

wrote it).

For example, he has one patient who is hospitalized a lot. He likes

to give her some say over going home from the hospital, so he tells

her it depends on her PFTs, if they're higher, he'll let her go home.

He said she's already figured out that if she wakes up early and puts

off doing the PFT until late afternoon, then she'll blow a higher

number and get to go home.

We discussed this because even though my son looks and feels really

well, his PFTs are generally what I describe as " lousy. "

BUT now, looking back the past four years, his PFT tests have always

been done when he's only been awake a couple hours. So maybe there's a

whole lot to this " random number generator " thing that the doctor

talks about.

Have any of you ever gone back to look at your child's PFTs results

and noticed a difference between morning and afternoon PFTs?

It would be interesting to pull out copies of past tests and think

back -- " Okay, this was a day my child was in really good health, but

PFTs were bad. " or " Hmmm, this was a day my child didn't feel so well

and lungs sounded yukky, but the doctor said the PFTs were unchanged

or okay. "

I'm really curious about this and hope I wrote this clearly.

Kim

Mom of (23 with cf and asthma) and (20 asthma no cf)

Howdee,

THAT sounded pretty good, except the sperm donors actions. I do

hope it can become Calmer for your sons sake. You'd think he would

understand , all you do is for your son....

Hopefully , it will be better soon. The holidays , maybe will put a

smile on everyone's faces.

LOVE & HUGS, grmBEV

> 's clinic visit

>

>

Hello everyone,

I just wanted make a quick update regarding Josh's clinic visit. He

has been 3 times in the last 4 months. He seemed to have this nagging

cough that he couldn't get rid of.

I didn't go personally, my ex and I usually alternate since we have

joint custody. I had gone the last three times because I had so many

questions after being on this list. I hate to say it but the ex and

I are having it out (again) and I couldn't sit in that small room with

him for hours and not want to kill him! Anyway, my big concern was

getting him on the Zithromax. Josh and I had talked about it between

ourselves, I usually try to get him interested in the new stuff I

learn here. I also had printed some of the information Kim had sent

about it. So I did send them armed with information and questions. It

seems that it was all unnecessary! She had paperwork for us to read on

it. Josh was so excited. He said " that's the stuff momma said she

wanted me on! " .

The doc was so surprised that we even had a clue! A big thanks to all

of you that informed me. For once I didn't feel like the big dummy

that just says " okay " and hands my son a new bottle of pills that I

have no clue about.

So they took a culture which is cool, because I'm not really sure

what's growing in there. As soon as it comes back we can stare the

Zithromax!

What is so strange is that his lung functions had already jumped up

better than they have been in a long time. He has been coughing

allot in the past few months, cheating on his treatments, and not

taking his med's. I counted his Cipro last Friday and fussed at him

for faking me out. He will go to the kitchen after being told to take

his med's and pretend to take them. He's 14!! I just don't get it, if

you are already up, why fake it?? But the doc's wanted to know what he

had been doing different because his lung functions were so great!!

Needless to say Josh kept his mouth shut! He wasn't about to fess up.

Wow, this is getting long...I'm just so excited for him. Between his

PFT's and new med's we will have gone a whole year without a

hospital visit!! Who know's maybe we will make it 2!