One week later, I received a phone call from her doctor. I was told that the results from her culture had come back from the lab and they had found mucoid Pseudomonas Aeuruginosa in her lungs.
It was the worst feeling I have had in a long time, getting that phone call about Lucy's culture. As Lucy's safe keeper, her mommy, I felt like a failure, like I didn't do my job to keep her protected. Pseudomonas is what all CF parents are warned about and she got it. Deep down I do know that it is not my fault, it was inevitable and I did the best I could do to keep her healthy. I know my job now is to kick some Pseudomonas ass and to keep it gone. I did my fair share of crying that night that I received the news, I dried those tears and now I fight!
Pseudomonas is a bacteria that can live anywhere such as man-made things, water and soil. It is one tough bacteria to fight off and is resistant to most antibiotics. "Mucoid" means that it is still 'new' and has not taken hold of her lungs, yet. The Pseudomonas bacteria is just hanging out in her bronchial tubes right now which is why Lucy's doctor wants to treat this infection so aggressively. We are going to try to kill it before it makes a home out of her lungs.
Pseudomonas can be especially harmful to those people living with Cystic Fibrosis because the mucus lining of their lungs are sticky and thick, and because Pseudomonas is so hard to kill with oral antibiotics. A CFer's lung is a great place for bacteria like Pseudomonas to grow and thrive. The bacteria can set up shop (colonize) in the lining of the lungs causing irritation and other lung infections leading to lung damage. I read that 80% of all CFer's will eventually have Pseudomonas come up in their cultures, it's just a matter of time.
This bacteria is certainly not the kiss of death and can be treated. Lucy will be taken off Bactrim and will be taking another oral antibiotic, called Cipro, twice a day for two weeks, to clear up the rest of her cough and wheezing. She will also be doing a six month run of an inhaled antibiotic to get to the source of the problem. Since Pseudomonas is resistant to oral antibiotics, she must inhale an antibiotic, called Tobi, twice a day for once month at a time, and Tobi is done in cycles. One month of taking Tobi. One month off. Another month of taking Tobi. One month off. One last month of taking Tobi and then she will be cultured again to see if the treatment worked.
I have tried to explain this bacteria very simply and how it may effect Lucy but I am certainly not a doctor. If any of you have more questions or details, please ask!
Don't feel guilty, I know where it comes from. Guilty for a faulty gene, guilty for the germs all around and worst of all guilty for the would have, should have, could haves. All unfounded and admittedly useless. Hope treatment is well tolerated for your little angel. I'm a CF mom like yourself - but much newer to the game. Thanks for sharing your story - it helps to know that someone else somewhere knows what we are going through.
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ReplyDeleteI am also a CF mom to a baby girl who is 1 now. But she has grown all sorts of many buggies that CF patients go through. Pseudomonous does suck, just i think because of all the different medications. Tobi twice a day for 28 days and then 28 days off. and cipro. Sometimes psedomonous will go away but it will always be there. Jenessa's, my daughter, has had that buggie for 3 cultures i believe.
Pseudomonous will always be in her lungs and Tobi will always be the medication that you run to.
Good Luck to you and Lucy.
Everything will be ok..promise. I grew pseudomonas most of the time when I had infections...and the majority of the time, the infections always cleared up. It's a tough bacteria, but it can be beat and treated. I don't know why...but to me it seems like doctors and parents are making it so much more of a big deal..I guess it's just because they have more knowledge than when I was younger. But don't feel guilty..all CFers usually do grow this bacteria at some point. It can be treated and controlled. I did the TOBI one month on, one month off for many years (and are currently doing it now as well).
ReplyDeleteHowever, sometimes Cipro will work on it's own, and another oral abx: Avelox is sometimes sensitive to Pseudomonas, depending on which strand there is....so there is HOPE!! And there was nothing you can do to prevent it. It's very hard to prevent and is quite stubborn. I'm glad they are treating it aggressively!!!
Oh..and one other thing...it also grows in the sinuses (and that's where mine is; despite having new lungs, I still have pseuod in sinuses, which I have to treat).
Hello,
ReplyDeleteI'm a CF-mom and my daughter is 1 year old, her birthday was not long ago (august 4th). She also had the pseudomonas bacterie. I was worried she's the only baby who gets that bacterie at that young age. We also have Tobi and Cypro. Tobi is very difficult to give, my daughter hates it. Do you have any tips? I'm sorry for my typing, I'm from Holland..
Good luck with your child.
My son does not have a diagnosis of CF yet, but I know its coming. They did additional genetic testing after he cultured Pseudomonas. I had no idea why the nurse said it in such a way that gave me a chill down my spine. Dr. Google says some scary stuff about it. Thank you for the information. My son is 7 years old.
ReplyDeleteMucoid does not mean "new". Mucoid pseudomonas is actually far worse than non-mucoid. Mucoid means it is making its own biofilms and stuff. It means the infection is now chronic. When you first get a pseudomonas infection, it is generally non-mucoid but if it stays in the lungs long enough, it will eventually mutate into mucoid.
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