Category: pseudomonas aeruginosa
So, here is a picture of pseudomonas aeruginosa. At the CF clinic, on the door of all of the rooms, there is a poster that shows the lungs and how pseudomonas effects them. It also shows a picture similar to this one on the poster. Today, Julia said, “Look Mom, pickles!” I thought it was funny that Julia thinks the bacteria growing in her lungs looks like pickles. Those are some scary looking pickles!
About a month ago I received a call from the CF clinic with a report on Julia’s culture results taken at her most recent visit. The nurse informed me that Julia did in fact test positive for pseudomonas aeruginosa. She continued to say that she hated reporting this one. This bacteria is a bad one… it’s not good for CF patients to have pseudomonas growing in their lungs. Sometimes I feel like an idiot, because doctors and nurses rattle off all kinds of fancy terms, expecting me to know what the heck they’re talking about. Once the nurse started talking in medical language that I didn’t understand, I stopped her and told her to break it down for me like I was a kindergartener. She said that pseudomonas is a bacteria known to lower the lung function of CF patients and that we would need to start Julia on TOBI, an inhaled antibiotic.
This new inhaled medicine would be added to all of her existing regiment. The only trick is that TOBI cannot be administered while Julia is in her Vest. It can only be administered after her other medicines and vest are completely finished. TOBI is a twice daily treatment and for Julia it takes 25 to 30 minutes to get it into her lungs. This adds an additional hour to her daily treatments, not to mention having to sterilize two additional masks and nebulizers. TOBI is expensive! It retails for around $4500 for a one month supply. Even with a 20 percent copay, that’s $900! We lucked out this time because we had maxed out on our out of pocket for prescription drugs, so we didn’t have to pay.
How do you avoid pseudomonas? Where is is found? I have since learned that pseudomonas is found in water, soil, improperly sterilized nebulizers, improperly sterilized dental and medical equipment, other CF patients, and I was even told that it is found in dog’s ears. Great! We just got a dog about a month ago! We have also been told that it can possibly be contracted from the steam that comes off a plastic shower head. Scary…we do believe that Julia contracted pseudomonas from a jacuzzi. I was told not to let her in a jacuzzi, but I thought that the only way she could get something was by choking some of the jacuzzi water into her lungs, like most young kids do when they are learning to swim. No, wrong, I now have been told that she can get it by simply breathing the vapors coming from the water of a jacuzzi. When the nurse was teaching this at CF parents night out, my husband and I looked at each other and had a “What have we done,” moment. In early September we had let Julia stand in a jacuzzi, being very careful not to splash and not to let her splash. We believed that this would be safe. We were very wrong.
If you are a CFer, you don’t want pseudomonas. If you are a mom to a young CFer, you don’t want this for your child. It’s expensive. It’s time consuming. It’s damaging to the lungs. Once the lungs are damaged, it’s permanent. You don’t want this. Avoid it if you can. Don’t let a CFer in a jacuzzi or anywhere near one in my opinion, because who knows how far the vapors can travel.
When I first learned that Julia had this I cried. It really brought the severity of this disease right back in my face. I went through the thoughts, “Why weren’t we told this and that,” and the “If only we had had more information to make better choices.” Knowledge is very powerful in protecting your child from certain bugs. I still don’t fully know if pseudomonas can be eradicated from the lungs of a CFer. I have been told that it can and that it can’t. I have also read and have been told that 80 percent of CF patients will test positive for pseudomonas by age 11. That’s quite high. I really wish we could have seen it show up much later rather than this soon in Julia. For this, it’s definitely the later the better. Pseudomonas causes the lungs to have an inflammatory response and this response causes permanent damage. If left untreated, lung function decreases…not good. Another strange thing is that Julia showed no symptoms of being infected with anything. No runny nose, no cough, no fever, nothing. If you look at her, she looks like a perfectly healthy two year old child. You would never know she had something potentially deadly growing in her lungs. This made the news of the positive test result even more shocking.
Today will be Julia’s last day of a 28 day run of TOBI. Julia is such a trooper. It is very time consuming and a lot of time to ask of a two year old to sit still. Our hope and prayer is that she will test negative in two weeks. Wish us luck!