How bad can Pseudomona be?

[harvey]

I've heard a lot about the dangers of Cepacia and some mention of
Pseudomonas.  Just how bad can Pseudomonas be?  What are
the best practices for not getting Pseudomonas?  Does it
spread easily?  What organs does it effect?  Are there
various strains? Some bad...some not so bad?<br>
<br>
What's your understanding of this based on your experience?<br>
<br>
Thanks,<br>
<br>
Harvey

 

[LouLou]

mucoid is worse than non-mucoid
my understanding is that it's inevitable that all CFers will colonize PA eventually
Hand sanitzer.

 

[anonymous]

Had PA since I was 12. Probably polyp surgery is where it began. IV's always get me back in shape if it gets out of hand though.

 

[anonymous]

Do you mean pseudo. a? (PA)

Cepacia is in the class of bugs referred to as Pseudomonads, so I'm not quite sure what you're asking.

 

[anonymous]

PA kills over 85 percent of us. It's bad.

 

[anonymous]

I<img src="i/expressions/face-icon-small-confused.gif" border="0"> thought that Cepecia was the worst......

 

[CFHockeyMom]

Harvey,

When Sean was first diagnosed at 12 weeks old, we were told he cultured PA. I couldn't find any info on it and everytime I asked the Dr. I got the run around. I finally got a resident to tell me something about it but what he told me totally freaked me out.

So, here's what I know now...

Basically CFers cutlure (in their sputum) all kinds of bugs. The more "mild" bugs are the viral type followed by staph followed by PA (non-mucoid then mucoid) then, if you're really lucky, you can culture Cepacia. There is also MRSA and I think that falls into the category of "Superbug" just like Cepacia. There are all types of Cepacia and new info is being discovered everyday. This is still a "relatively" new discovery in the CF world. It used to be considered a death sentence but isn't anymore.

Cepacia was once thougth to be from the PA family but that has been disproven.

Once PA becomes mucoid (i.e. colonized), it starts to cause some serious damage and is resistant to meds. The idea is to prevent it from colonizing, hence the introduction of inhaled Tobi.

Most Dr.'s subscribe to the theory that once you culture PA you always have PA even if it doesn't show up on your culture.

As far as preventing it, good luck. PA lives everywhere, especially kitchens and bathrooms. It loves to grow in water/moist/damp areas. It's also very prevalent in hospitals as are most bugs.

I know there are plenty of folks on here that know more than I so hopefully, they'll chime in.

 

[Ratatosk]

DS cultured pseudo the first time when he was about 3 months old. It was one of those things that was mentioned when DS was first diagnosed, with an added comment, "you won't have to worry about that and tobi until he's much older -- possibly teens" So when he cultured nonmucoid at 3 months, I was crushed. Up until that point, it hadn't really hit home that DS had CF, we kept thinking it was all a big mistake, big misdiagnosis.

When DS has cultured it -- they do cultures at every clinic appointment -- he's never really had any symptoms of anything. We always go in thinking, he's doing great, he won't culture anything and we'll get the news a week later that he has cultured it once again. DS pretty much started off with more sinus issues, so maybe he's growing pseudo in his nasal passages. L

 

[thelizardqueen]

I cultured PA once when I was 7 I think, and it was erradicated from my lungs. I didn't culture it for 7 years. When I was 14 I got it again. Where I got it I have no clue. At this point now I have 4 strains of pseudo, although it hasnt' really been causeing my too many problems until this year, where I had my 2nd hospitalization in about 9 years. Its inevitable that you'll culture PA. Every CFer gets it eventually. Its in the air, soil, water, etc. Hand sanitizer is a good way to try and prevent.

 

[Bozo]

So the doctors tell me that i'm resistant to all meds when it comes too pseudomonas.. I know that this is not a good thing. How long can one live with this one year or 3 years...?

 

[ladybug]

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


Once PA becomes mucoid (i.e. colonized), it starts to cause some serious damage and is resistant to meds. The idea is to prevent it from colonizing, hence the introduction of inhaled Tobi.



.</end quote></div>



Actually, my mucoid is sensitive to some meds. Though I don't think my two strians (mucoid and non-mucoiid) have EVER been erradicated by antibiotics IV or otherwise, the antibiotics do seem to alleviate the symptoms and change the amounts from heavy to light. Mine has never gone away since age 7 when diagnosed with PA.

 

[ladybug]

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

So the doctors tell me that i'm resistant to all meds when it comes too pseudomonas.. I know that this is not a good thing. How long can one live with this one year or 3 years...?</end quote></div>

Bozo:

The weird thing about PA and CF in general is that even if you're resistant to all or nearly all antibiotics, they can often use various combinations of antibiotics and get results. Your doc needs to know which drugs to use together and sometimes it does not work. But, I've been told by my doc that they see patients who are pretty much resistan to everything and they still alleviate symptoms and can "knock back" some of the infection by using combos of antibiotics. So, all hope is NOT lost. Ask your docs about it and see what they have to say. Can't hurt to try things.

 

[coltsfan715]

I have been told by my docs that Psuedo is a destructive bacteria and can be a problem because it can multiply quickly. I usually culture PsuedoA. and MRSA and have had times where barely any MRSA bacteria is seen because the Psuedo spreads so quickly that it "covers it up". At least that is the way the doc described it to me. That normally happens when I am in hospital with a flare up.

Also to add I have never had my Psuedo be completely resistant to all meds, but I have had resistancy to some meds and it often changes. Where I will be resistant for 6 months and then poof all of a sudden I am no longer resistant to Cipro (for example).

Lindsey

 

[littledebbie]

I've cultured pseudo since I was 6 but never had resistant pseudo until I was 16 or so and even still if we hit it with drug combo's it can help.

 

[harvey]

Thanks,<br>
<br>
This is very helpful information...but scary at the same time.
 What if someone with PA in a waiting room coughed on you,
would you likely get it?  Do you think doctors could carry the
bug from patient to patient on their clothes or stethoscope?
There's not much you can do about it if that's the case. It would
just be a matter of time before you caught it.  Makes one
afraid of hospitals...but you really don't have a choice sometimes.
 I worry about the cleanliness protocols of hospitals.  I
doubt that anyone would dare wipe down their doctor or nurse
before each visit!<br>
<br>
Harvey

 

[Alyssa]

I believe hospitals are the most dangerous place to pick up bugs.

Yes, there are protocols for keeping doctors "clean" between patients. All doctors and nurses you come into contact with should wash their hands before they touch you and they should have washed their stethoscope as well. I got a button from a pharmacy once that said "have you washed your hands?" and another button that said "have you washed your stethoscope" I think it was for a patient to wear while in-patient at a hospital stay. My daughter has cultured MRSA once and cleared it - her chart got tagged and their "new" policy was they had to put on these paper gown things over their clothes and shoes when they came into our room for a clinic visit. They only did that for one visit since we pointed out that she had never cultured MRSA since being seen at that clinic for 5 years now.


Yes, it is possible that if someone with PA coughs near you, you could get it from them -- hence the 3 foot rule, wearing a mask at clinic and trying to keep everyone separate while waiting for their room at clinic visits. Having said all of that, <b>I asked our doc which was more likely to happen -- getting PA from another person with CF or picking it up from the environment -- and he said "from the environment" because it is pretty much everywhere</b>. But, because it "IS" possible to get it from another person, they have implemented the safety protocols.

This may have already been addressed by others (I only skimmed the responses) but everyone handles PA differently. My daughter has only cultured it once, about 14 months ago. One round of Tobi and Cipro kicked it and we haven't seen it again yet. It was non-mucoid so that helped a lot. It is my understanding that most people start off with non-mucoid and if you don't get it to clear out it will eventually turn mucoid, which is more difficult to treat.

 

[NoExcuses]

.

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFHockeyMom</b></i>
Once PA becomes mucoid (i.e. colonized), it starts to cause some serious damage and is resistant to meds. The idea is to prevent it from colonizing, hence the introduction of inhaled Tobi.
</end quote></div>

I have mucoid PA. I also have 4 strains of it, and I'm nowhere near resistant to meds. One med works fine on me...although there are about 8 I can still take with no problems.

 

[wanderlost]

I just found out I culture PA and I am 29. I believe it is class II PA and I can take levaquin and cipro for it, but have not been able to while pregnant. I have no idea where I got it - I was a swimmer all my life and went to daycare and public schools, so I was exposed to a lot of wet humid moist areas and germs for a long long time, but somehow resisted until now. I am hoping after my baby is done nursing to get myself on to some serious antibiotics in order to really give this PA a run for its money, though I worry in the meantime what it's doing to my lungs.

 

[ladybug]

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

I am hoping after my baby is done nursing to get myself on to some serious antibiotics in order to really give this PA a run for its money, though I worry in the meantime what it's doing to my lungs.</end quote></div>


Although scarring can and does happen, I wouldn't worry too much unless you are having difficulties like a flare-up from it. I have cultured PA since 7 years old and my docs only put me on antibiotics IF and WHEN I am having an exacerbation and FEEL crummy because of it. So, just cause you culture PA does not mean you have to go on antibiotics. As I said, I culture it every single time no matter what I do and have gone to 2 accredited clinics (very good and large clinics btw) and neither worry unless it is causing me discomfort. So, unless you feel crappy and like its an exaccerbation, I wouldn't be too concerned. JMO though (well, and the opinions of my docs). You could deffinitely go on antibiotics once the baby is born though to try to "knock it out"... seems that is what most on this site do. However, even when I'm on antibiotics that I'm sensitive to for 3+ weeks, I still grow PA. The docs take me off the antibiotics cause I FEEL better. I guess some go by how you FEEL, while others go strictly by what you culture.