Pseudomonas

[running4life]

I swim 2-3 times a week and my doctor highly encourages it. He has never once mentioned Pseudomonas being in the water or it being a threat. I'm not a parent, but I don't suggest depriving your child of something she loves because it MIGHT hurt her. My mother never kept me from doing anything - just found ways for me to adapt if needed.

 

[Gammaw]

We all weigh the risks vs. the potential harm. No doctor can tell you for sure where pseudemonas is living. There are some studies done, many from other countries. But none of them are conclusive - they can't rule out seemingly harmless sources, such as your own kitchen sink or tub as the source from which you have contracted pseudemonas. Having said that, the conventional wisdom that many CFers live by say this - lakes and rivers are the most risky. Community pools are risky too depending upon their adherence to the schedule for cleaning and chlorine in particular. Chlorine will likely kill bacteria in the water before it gets to you. It will not kill it in your body, but in the water. You can also get it in private pools, but they tend to be kept cleaner - following the maintenance and chlorine schedule if you know it. Our local YMCA keeps such a high level of chlorine that it hurts my eyes to walk into the pool room. So I feel comfortable there. If your relative has a pool they don't bother regularly maintaining, then it's not likely to be better than the river. Oceans on the other hand are not only safe, but therapeutic. (Hence the australian experience). The high salt content in the water is an incredible cleanser. Even in your body. The Australian surfers breathe in water on a regular basis - great for the lungs. Great for sinuses too. But don't be fooled. Salt water pools that some people install are NOT therapeutic. They clean the water with a very low level of salt rather than chlorine. It is not sufficient to kill bacteria and in fact allows a breeding ground to exist. They are worse than most pools. In addition standing water is a risky source. Your sink, puddles in the sandbox, the puddle of water left inside the plastic bowl that comes out of the dishwasher etc. are risky. Keep everything your CFer uses dry. I've seen posts where people use the hairdryer on their toothbrush after use, though I think that may be overkill.Pseudemonas is indeed everywhere. In the dirt, in your cats ear infection, in puddles. It's very difficult to avoid. I hope I've helped.

 

[Gammaw]

By the way, hot tubs, jacuzzis, and the like are the worst offenders. They are not chlorinated, and the temperature is so high it's like a big petri dish for bacteria! If you avoid nothing else, avoid hot tubs. Your doctor will likely confirm that for you. I've received handouts from my CF Clinic before that specifically mentioned they should be avoided. After my little guy had been in one, of course.

 

[heidikk]

I had read too that the salt pools are not salt water but basically create chlorine by splitting the salt somehow. I don't suppose there is a way to create a real salt water pool?

 

[aannddd]

We stick to the ocean and salt water pools only. Salt water inhibits PA from growing. You run a much higher risk swimming in chlorine pools and fresh water lakes and ponds. More and more people have salt water pools. We were even able to find a salt water filter for one of those little above ground pools.

 

[Gammaw]

Any research on the salt water pools? I have read that they have insufficient salt to be effective and can promote bacterial growth. . . . Thanks a,

 

[Scorp]

News flash !!!!

I have had several Cf Drs. over my 60 years.. And they all say the same thing.. ONCE YOU HAVE "PSEUDOMONAS" you never get rid of it.. Even a "clean-out"/"tune-up" does not get rid of "Pseudomonas". But it seems to be the norm in the CF Drs. world of knowledge. HOWEVER one of those Drs. also told me (just this past wed.) if the "pseudomonas" have not killed me by my current age of 60, they probably will never kill me. So take that for what it is worth........Scorp(PRAYING)

 

[Lety]

Scorp, could you tell me your mutations?

 

[stephen]

Scorp,

I've heard the same thing from more than one doctor. There may be times when the cultures are not positive for PSEUDOMONAS, but it's probably still there.

 

[Scorp]

My Mutations

2XDeltaF508...As bad as it can be.......Scorp

 

[TICMOMOFF1]

I was shocked that our kiddo was not growing Pseudomonas this time around after growing it for years. This go around she was only growing MRSA and they did a Bronch on her to and still no Pseudomonas...what's the difference? no swimming....we owned a pool and we moved and we had suspected the pool but we bought the best equipment and tested all the time but she still had trouble and then after not having her to swim it really was shocking that she had no pseudo at all. I know that it grows every where but swimming is different kids swallow alot of pool water when swimming and after this go around and her not growing any at all I will not let her go swimming anymore.

 

[cabadie1]

swimming and pseudomonas

That's very interesting. How old is she?

 

[TICMOMOFF1]

She is 10...but started growing Pseudo very young and by 5 they said that she was colonized with it, but the cultures they got deep in her lungs say only MRSA this go around, this was from a bronch done...I have noticed this trend before on her, if she went swimming then she grew pseudo and no swimming no pseudo....something to think about...

 

[nmw0615]

Did they get samples during the bronch from everywhere in her lungs? I only grow Pseudo in two area of my lungs, so if I cough up a sample from somewhere else, it shows up as me not having pseudo. I'm not trying to be negative, just saying it might not be completely gone. The swimming may cause it to grow in more places, so when she coughs something up after swimming, that might be where it comes from.

Again, not trying to be negative; it just makes me a little sad to hear about a child being denied doing something he or she might enjoy out of fear.

 

[rcwebster]

My daughter will be 3 in July... just catching up on this thread about pseudomonas... Three cultures have come back positive and we have followed up with Tobi. This latest positive was after a season of almost no swimming. I understand both sides of the situation - letting kids do what they love and not allowing fear to control them or removing an activity that causes infection... my concern is the long term. It is my understanding that repeat bacterial infections in the lungs can cause lung tissue damage over time. Is this correct? So maybe finding a different activity if we know psedudomonas is in all water? My daughter LOVES swimming, we live in Florida and go to the beach and are around pools frequently.

 

[cam]

Scorp is correct u will always have it forever even if u dont culture it from time to time in my experiences it suvks I have cepica also witch also sucks multi drug resistant and so hard to treat just have to keep it in check with inhaled antibiotics and iv antibiotics I believe I got mine from hospital back in day when they didnt site up to come in room so be careful very careful while in hospital very dirty make sure they put on everything and wash hands all that I know a cfer who got tb from doctors bringing it in or someone came in that didnt put on everything remember we r very subseptable to just about everything but does that mean not live or go anywere or enjoy things no just b careful hope everyone stays healthy bye

 

[cam]

Do you have cepica and if u dont mind me askin how is ur lung function thanks

 

[cam]

That question was for scorp sorry not good at this thing im doin it on phone

 

[imported_Momto2]

I had a very bad case of pseudomonas A. as a child for years and then after hyperal did not test positive for it for the next 30 years-- up until this year when I started on a chemo drug that majorly beat down my immune system. To me, that says that people with CF can fight off PA in certain cases if their immune system is rocking (which mine always was) since 30 years is a LONG time to have something in your lungs sitting dormant and not cause any difficulty. (and I had countless cultures during that time) I did get sick during those years, but what I cultured was never PA. I dunno, I just thought it was an interesting pattern that folks might want to know about.(FART2)

 

[Dreamweaver1019]

My grandson had it a year ago, and at the time it was to cold to swim. We have an above ground pool at the house, so I asked the Dr. about swimming and he also told me that was fine as long as it was kept clean. Of course, lol! He did however say that ponds, lakes and similiar were probably not a good idea. The murkier the water the bigger chance of bacteria. He has never mentioned getting it from showers or baths. I have to say you two are the cutest couple (L)! Have a blessed day.........