Monday, January 23, 2012

One box down, One to go



A week into Cayden's pseudo treatment we got word from the clinic that Trinity had also cultured for pseudo.

TOBI® (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. For the purpose of this blog post we will refer to it as PA.TOBI is given in 28 day cycles especially for people on it chronically. 28 days off and 28 days on. At the end of 28 days they will be re cultured. If they do not grow PA we will stop TOBI. If they continue to grow we will most likely repeat and possibly change to Colistin at some point. Many will never get rid of PA, but the important thing is to minimize damage to the lung tissue.

Between the ages of 6 and 10, about 40% of patients with cystic fibrosis have Pseudomonas aeruginosa infections

By the age of 17, nearly 60% of people with cystic fibrosis have Pseudomonas aeruginosa infections in their lungs

Up to 80% of adults with cystic fibrosis between the ages of 25 and 34 have Pseudomonas aeruginosa infections

To learn more about taking TOBI you can visit TOBI's OFFICIAL WEBSITE

Each of the kids is on a 28 day cycle and each treatment takes about 20 minutes. We start each day as close to 6 am as possible. With antibiotic nebs we have to start with chest therapy (30 minutes) followed by TOBI (20 minutes). We try to accomplish all this before 7 am so we have enough time for breakfast and getting dressed for school.

I have to admit as little of fun it is for our kids, I hate it even more. We have lost 2 hours of our day and I for one am not a morning person. TOBI is super sticky which clogs our nebs so by the time we get everything working properly we're looking at another 15-30 minutes a day. In the words of our favorite bedtime story "Where the Wild Things Are" PA "roars its terrible roar and nashes its terrible teeth!"

As much as we hate TOBI we have to be thankful for it, because not too long again CF patients who cultured PA were not given much longer to live. The fact of the matter is that when CF patients do not treat Pseudomonas aeruginosa, lung function declines about 2% a year. That could be about a 10% loss every 5 years.

Fortunately neither Cayden or Trinity are symptomatic at this point, but it is still creeping its way into their lungs. As adults they will most likely always culture PA, but while we can do something before the damage is done we will.

It seems like everyone we know lately with CF has cultured PA. It's interesting to see the spurt of something like this so widespread in just our circle of the CF community. One of which is little Maddie a friend we have met via social network sites like Facebook and Cystic Life. Maddie is 3 and has had pseudo for an entire year. She is now hospitalized for 10 days and luckily her bronch came out with great results---PA is in her throat but not in her lungs. You can follow Sandy, Maddie's mom's blog at Mommy for Madeline.

Fingers crossed this will kick it...we have 2 weeks left to see the verdict!

2 comments:

  1. I have such HUGE hate for this beast! I hope that you are killing it off quickly that the last 2weeks help get it out. Fingers crossed for you and your family. Love the information you posted on your blog. Can I like this post to my blog and tell everyone about it? You did a great job explaining! Hugs to all of you.

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  2. God Bless you and your beautiful family on this ever changing journey with CF. I have a 2 year old daughter Olivia with CF who has changed our world and inspires us everyday. Through her, we have learned to live each day to it's fullest and appreciate all things in life. Your story is of inspiration to me and my family and I thank you for your blog. I treasure the CF blogs I come across as they provide me with education and the realities of life with CF but most of all HOPE. Thank you for sharing your story.

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