cultures, worrying too much, thick urine, STUFF...

[Guest guest]

<< JENNIE, Have a great time in Canada, by the way!!! You've EARNED a

vacation. I hope everyone is HEALTHY while you're there! And thanks for

telling me about the risk of renal failure with serious asthma. I LAUGHED

when I read that, actually. On one hand you reassure me that I'm going off

the deep end over sputum cultures, and I don't have anything to worry about.

And then you get me thinking about renal failure!!! Good to know about the

risk, though. >>

,

LOL--sorry, see, I guess even the best attempts to reassure go off the deep

end! Guess its in our nature! (moms, what can we do with them, huh? though

some of the dads on the list rank high on the worry scale as well...) Ron,

however, (my Ron) has this attitide, if they have CF, they have CF,. doesn't

matter what the CF doc called it for a year, or if they have Pseudomonas,

they have it, doesn't matter if it plays hide and seek on the culture

results! Anyway, I surely didn't mean to diminish your worrying, if

anything, I was trying to let you know that we all go through, its one of the

stages of CF, I think. You know how there are stages of grief? Maybe we

could invent our own stages of CF acceptance. First, there is disbelief and

education, education, education re: CF. Then we all decide it ain't so bad,

do the treatments and there will be a cure before our kids reach the average

life span age anyway.... Then we face our first real CF crisis, whether its

IV's for the first time or surgery for GI stuff or polyps, the we face

pseudomonas or whatever, and someday if the cure isn't found soon enough, we

face and cope with some of the worse things our wonderful friends cope with,

such as pneumothorax, hemotypsis, to tx or not to tx, tx denials, or whatever

else associated with end stage. But most of us are still in the stage of

believing we will never personally have to reach that stage withour

kids--thats how we cope, one event at a time..... gosh, now I am getting

morbid, maybe its hormones. Someone more sane than me, shut me up, ok?

Anyway, , I was just trying to say that we survived it (bad cultures)

and you too will survive it and give that pulm. hell and make her do the

cultures so you will feel better!

Take care, going to go take my de-morbidity pill now (just re-read my post,

geez, what was I thinking?????)

NIte and take care,

Jennie

[Guest guest]

Hi everyone,

JENNIE, Thank you!!! I really needed to hear an experienced, calming voice

on the culture issue. I know I got too obsessive over it. Believe it or

not, I'm usually NOT a worrier!!! I think my fixation on the sputum culture

(and worrying that the last one might have missed something) has something

to do with all the pulm. stress we've been experiencing, and the fact that

M's CF dx is still really new, and I'm still figuring out what she's going

to DO, what CF is going to be like for her, at least in the near future. I

took a DEEP BREATH after reading your post, and RELAXED. Besides, M's

actually acting healthy for the first time in 2 weeks today (though she's

still got that pesky low fever). And I had such a stressful day today, that

CF and our impending pulm. appointment actually took a WAY back seat to

dealing with life in general.

Reading Torsten's post about Fiona's staph " hiding " for some of the

cultures, or going away for awhile and then coming back, I did decide that

it's a good idea to ask our pulm. to do another culture on Friday, just so

that we can confirm that there really isn't anything there. (I feel like

we're getting a bit of a late start finding out M. has CF when she's four,

and want to make sure nothing's gotten ahead of us.) Our pulm. really did do

an actual sputum culture for Meagan, by the way-- M. was really cooperative,

but this is a kid who's been doing peak flow readings since she was three,

who can do real PFT's already, who didn't so much as bat an eyelash at the

NPD test, and who didn't even cry the last time our ped. ordered blood

drawn. She's really a little trooper about all the procedures. She hasn't

been coughing anything up lately, though, so this time (if she agrees to do

a culture) our pulm. might have to do the gagging-down-the-throat variety.

Uck.

So, out of curiosity, how often do all of your pulms. or CF docs do sputum

or throat cultures??? It sounds like the Danish do them more often than

Americans? If they've got such great success records with CF, wouldn't this

seem to recommend frequent cultures? Our pulm. does them twice a year.

JENNIE, Have a great time in Canada, by the way!!! You've EARNED a

vacation. I hope everyone is HEALTHY while you're there! And thanks for

telling me about the risk of renal failure with serious asthma. I LAUGHED

when I read that, actually. On one hand you reassure me that I'm going off

the deep end over sputum cultures, and I don't have anything to worry about.

And then you get me thinking about renal failure!!! Good to know about the

risk, though. I'm going to call M's ped. again tomorrow (never returned the

message I left yesterday a.m.-- grrrrr!) and find out when he wants to

re-check her urine, and I'll also ask if there was protein in it-- that's

different from there being red and white blood cells in the urine, isn't it?

(I never took my basic urinalysis 101 course!) M. certainly did have THICK

urine, and she's got the puffy face going for her, and of course we just

pass it off as from her inhaled steroids (which is probably what it's from),

but since M's always got some weird thing or other going for her, I'll ask

the doc about it anyway.

On the oral steroids and cataracts or glaucoma. We've known all along that

both are risks, but the cataratcs are a greater risk for young children (the

glaucoma usually hits adults, but we have them checked at their eye dr.

apts. anyway). The side effects of prednisolne, prelone, or medrol really

stress me out, but hey, BREATHING is important, and you do what you've gotta

do.

bye,

, mom of Meagan 4 (cf, asthma) & Kailin 6 (asthma)

[Guest guest]

Jenni

You hit the mark exactly with my own acceptance of this CF THING.

I'm right there at the point where I'm sure a cure will be available

before Zachary has any permanent lung damage, if that's to be.

I'm not one to bash the nurses(being a nurse myself) but the cf clinic

nurse called my daughter in law over the weekend to give her the full

results of the genetic testing. A good thing. BUT she also told her that

the research is moving along and there will/should be treatments

available for Zach if we can just keep his lungs in good shape. To a

young mother, who doesn't have a medical background, she took this to

mean that the magic pill is only a few months away. I hate to be the

neysayer, and that is one thing a pray for daily, but please , please

don't give false hope. I WILL speak with this nurse as soon as possible

(of course vacation time). Maybe my daughter in law misunderstood what

the nurse was saying, but she called me in tears telling me how wonderful

it will be.....(this is starting to sound like your morbid thing...) and

it will be a wonderful thing IF it happens in his lifetime.

Like you said the education thing and I am reading all I can and trying

to prepare myself for what is to come. The research sounds promising and

I hope it continues with positive outcomes. But right now I'm

concentrating on the weight gain issue and just keeping him healthy. And

in the worry wart category, I'm already starting to obsess about the

winter cold season and how can we best avoid any exposure (realistically

it can't be done... but I plan on giving it a try!!!!) somehow I have it

in my mind that if he can gain a few more pounds by OCT he won't get

sick... see I have it all worked out in my own little mind now all I

have to do is convince the universe to agree with my plan!!!!!

This all started to say thank you for validating my grieving process.

You really hit the nail on the head...

Have a wonderful vacation

MJ

Zachary's(4months wcf) Berry can't take the g word

p.s. the ones not going to Germany!!!!