Pseudomonas (su-da-mohn-us) showed up in Toe's last CF clinic sputum (mucus in the throat) culture. Pseudomonas is bad. Scary bad. How scary? Only time will tell...
Pseudomonas aeruginosa is defined by the CF Foundation as a "bacteria that causes many lung problems in people with CF. It can be resistant to antibiotics. It can be spread between people with CF." Up to 80% of CF patients eventually become infected with Pa.
For the general public, Pa is generally known for causing "hot tub rash." It is the slimy film that exists on the walls of poorly cleaned hot tubs. I'd venture to guess it is also the pink slimy stuff that grows on the bottoms of shower curtains and in sinks that have not been cleaned regularly (not that I am personally familiar with either of those forms of slime). It's not a huge deal. But, if you have CF, cancer, or are immunosuppressed, and it gets in your lungs, it gets complicated.
Pa is spread through contact - with random objects, between people who have CF, on improperly cleaned respiratory equipment. It can live on objects for hours. It exists in nature, in sinks, on skin, on counter tops and tables.
Here's my understanding of how it works: Once you have caught Pa, it forms a slimy coating inside your lungs. The slimy coating holds in other bad bacteria. Pneumonia, for example, can get trapped under the layer of Pseudomonas and then be almost impossible to treat because the Pseudomonas is antibiotic resistant. I think it also produces toxic proteins that can cause tissue damage. You hear sometimes about AIDS patients or the elderly dying of pneumonia? Yeah, sometimes that is caused by Pseudomonas.
I have sort of been under the impression that catching Pseudomonas is seen by parents of kids with CF as the beginning of a downward health spiral. Having said that, our clinic nurse, Ben, said that they do not see Pseudomonas as a huge game changer. The advantage (as compared to other bad bacteria) is that it can be managed with inhaled antibiotics, confusingly known as TOBI (short for Tobramyacin). Can you see the conversations? "I'm going to put Toby on TOBI." We've had them.
The Big Toe caught Pseudomonas when he was five months old and we were able to "eradicate" it with aggressive oral antibiotics and TOBI treatments for a month. At the time I thought "eradicate" meant "get rid of," but I now understand it to mean something more like cancer's term "remission." Ben says that once a kiddo has caught Pa, it is only a matter of time before it comes back. It can be 5 years, can be 10. There is a 35-45% chance that we can re-eradicate the Pseudomonas. If we do, Toe will have taken TOBI for a month and we will go back to normal. If not, Toe will take TOBI twice a day for a month, every other month, for the rest of his life (another addition to the twice-daily breathing treatment routine that now runs 1-1.5 hours each time).
So, back to last month. Routine check up. Toe's had a sort of crazy dry cough since May, but we thought it was just a case of asthma (the kind with just a cough, no wheezing) and were treating it with FloVent. About a week later, we were notified that he had Pseudomonas. It was the same day we were called in to sign papers on the house. Signing for the house was not high on my priority list that day. We made it through and then had to wait for the antibiotics to arrive (special shipment - must be kept refrigerated). We are doing a month of TOBI and then we go back to the clinic for another sputum culture.
We know he could have caught it anywhere, but we are stuck wondering where he caught it. Did we do something wrong? Was it a fluke? Was it something that is a part of our routine? Was it the swimming lessons? Second and third and fourth guessing. And all we can try to do is tame the questions, push them back, and face RIGHT NOW.
So, right now, TOBI is added to the breathing treatments. Toe doesn't like it. Says it tastes awful. The whiffs I get are pretty nasty. But, we are glad the treatment exists. We'll keep you posted.
Sources: Cystic Fibrosis Foundation's website: cff.org
Pseudomonas Genome Database: http://www.pseudomonas.com/p_aerug.jsp
You have explained a complex and often confusing topic beautifully Brandy. Moreover, you have done so with heart, soul and with as much lightheartedness as a mother of a child with CF ever could.
ReplyDeleteI hope more parents get to read your point of view. They could learn a lot and gain much insight, irrespective of whether their children have CF or not. You give us an invaluable vantage point. Thanks for sharing it.
As for the why's, you are wise to not dwell on it. We cannot and should not keep children in bubbles. As you rightly said, P.aerginosa can get passed from one child with CF to another. Does that mean parents and kids in CF organizations should never assemble? Probably not. As long as common sense is used when taking reasonable precautions, we are likely to never know where these infections come from.
I wish you, Jason and Toby the very best