How have many of you found out, you have the "Pseudo bug" or any other bugs/infection?

[anonymous]

How have many of you found out, you have the

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Both my kids have had bronchs prior to sinus surgery. I was opposed to it the first time, thinking it was unnecessary. But it was then that they first found the mycobacteria in Jesse. If I had declined, we wouldn't have known about the presence of this bug until the boys became sick. Knowing it when we did gave us two years of testing so this spring when Josh got sick, we had a plan for what to do.</end quote></div>

this is why saying "if you've never had problems, why do the bronch" is not the correct way of thinking, in my opinion.

just because you can't detect a problem or you haven't had one in the past, doesn't mean that the problem doesn't exist. a bronch is a brilliant way to find the bacteria, find it early, and preserve this precious child's lung function.

I wish I could go back 23 years and get a bronch and detect my PA early enough to eradicate it or treat aggressively early.

 

[eli]

How have many of you found out, you have the

Thankyou so much, to everyone who replied to my question. I appreciate it.

Yep, its a catch 22 and i 'm still very confused and don't know what i'm going to do.

Loulou- I also think alot about the new Pseudo drug that should be on the market, hopefully soon enough. But i also don't want to put her throught he bronch for any uneccessary reason.ie doc's are not concerned about her lungs and never realy have been. That is why she is on preventative antibiotics. I don't know i'm just very confused at the moment<img src="i/expressions/face-icon-small-confused.gif" border="0">

Alyssa- she has never tested positive to any bugs, as yet/or as far as we know. She did have i bronch in November, which was her first and it came up clear. This will now be her second, if we decide to go ahead with it.
But what bothers me is, they don't test for bugs in between, that's why i say i want them to do a culture because i don't know what shappening inbetween the bronchs.
Do you get me? Sorry if i'm cinfussing anyone.

Amy, thanks for the idea about contacting Minnesota, i will see about that. On the other hand, you asked the other day on chat why i was concerned about CROSS INFECTION. Well i just remembered another point i forgot to mention to you. When Olivia was in recovery, they brought in another two girls that had bronchs after her. When the nurse brought them in she said that one had the pseudo and the other had staph, Now they were placed 2-3 feet away from us, which was too close for my liking. Theywere both older girls (over 10) and mine was just a baby. I thought thta was i big risk, and i wasn't happy.
Any thought i would share that with you.

Lauren, thanks for you tip. I will be taking that on hand very soon.


Thankyou again to all, what would i do without you.<img src="i/expressions/heart.gif" border="0">

 

[NoExcuses]

How have many of you found out, you have the

Oh my gosh that's horrifying that they placed CFers so close to each other.

You should run to your hospital kicking and screaming about that.

I wonder if they let CF patients share rooms while they're in for IV antibiotics?

I definitely wouldn't do another bronch if they refuse to seperate CFers. But I'm sure you could talk some logic into them.

FIGHT ON! You are a wonderful mom. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Your daughter is very lucky to have you.

 

[eli]

How have many of you found out, you have the

Hey Amy,

I'm not sure about cf patients sahring rooms, whilst on iv's. My daughter hasb't been on iv's as yet, thank god. I hope it stay's that way for a long long time.

I too, am sure i can talk some logic into them about separating her from other cf'ers. I will deffinatley brin git up next clinic visit.

Oh, and thanks for the nice comment. I hope i'm a good mum, i'd like to think i am. I just want the best for my daughter, like any mum would for her children.

Thanks agian
Eli<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[ReneeP]

How have many of you found out, you have the

I just wanted to respond to those who asked what they do at the Minnesota Clinic (I apologize if someone already answered and I missed it)....

I have two daughters with CF and we have attended four different clinics over the years, the vast majority of that time being in Minnesota. Neither of my girls have ever had a bronch. Every clinic we have attended, including Minnestoa, does throat cultures at every visit. I don't know of any clinic that does routine bronchs. Now, that's not to say it's wrong or not a good idea, only that I don't think it's the norm. I can see both sides of the issue but honestly I think if studies showed that it made a big difference in the health of the patients, it would be more commonly practiced.

Good luck with whatever you decide.

 

[thelizardqueen]

How have many of you found out, you have the

I've only ever had one bronch done, and that was only because I was having severe hemoptysis. Funny thing is, is that my doc couldn't find the cause of bleeding in my lungs, so we had to go ahead with an embolization anyway. Total waste of time I think doing the bronch when he couldn't find anything. But the thing is, is that he debated it for a good week, because the procedure is invasive. You can puncture a lung or artery, or cross contamination.

 

[anonymous]

How have many of you found out, you have the

Really just how conclusive are the bronc results? The experience we had with my daughter is that her docs have wanted to do a bronc since she was a toddler --we were always told that this would be the best way to actually see what could be growing although her throat cultures were always negative until she was 17 and then pseudo showed up and despite using several oral antibiotics and inhaled antibiotics it continued to show up and we wanted to try to eradicate since it was the first time for culturing this- we chose to do IV antibiotics and then her doc pretty much said we were going to have the bronc and by having it done it would tell us the whole story well when the results came back negative we were told that it was a false negative and that the bacteria must have been killed off by some numbing solution they used on the tubes they used to collect the specimens. So now we really have no confidence in the procedure due to our experience. Why would they use something that they suspect would kill off the bacteria before they can culture it? We wanted to be relived about hearing the results of negative however we were left with feeling very insecure and unsure of what to believe! So I guess I would be interested in hearing what others have been told as far as how reliable the results are from having this procedure done.

 

[thelizardqueen]

How have many of you found out, you have the

Obviously in my case the results were not reliable. I was told by my doc that he would be able to see where I was bleeding in my lungs and from what. After a month of severe bleeding, I finally got the bronch. My doc then informed me after the procedure that he could not see anything wrong with me, and that besides results are not always accurate I was told. I then procedding to have severe bleeding for another month after until they finally decided to do the embolization anyway. So I don't really trust bronchs all that much.

 

[eli]

How have many of you found out, you have the

hmmm, i have never heard of or have been told that bronchs are unreliable. Until i read this, well i guess its something i will have to ask the doc's at our next clinic visit.
They have always said to me that bronchs are most reliable and its the best and most accurate way of finding any bugs, therefor it/they can be treated and erradicated before they can begin to cause any lung damage.
Very interesting and confusing, on my behalf.

 

[anonymous]

How have many of you found out, you have the

As for the question about cfers sharing rooms when on IVs- I cant imagine. My son was just in for 10 days and there were notes everywhere that parents or patients were not allowed in each others rooms. Susan