Okay I'm late --- but this week has been long! Wednesday night Matt and I got back from bowling. Matt had to work on things for an upcoming conference next week. I stayed up with him as long as I could before falling asleep around 6 AM. My phone rang all morning, all phone calls of things that I had to deal with, one that led to a few more phone calls. By the end of that I was done even trying to sleep and got out of bed and sat half awake until it was time to go to my dentist appointment. Two hours later I was cavity free. I made a quick stop at Target for prescriptions and some new soft bamboo sheets to surprise my honey with, then home. Then as soon as Matt got home we drove an hour to Salem to the theatre pub to have our Valentines dinner and see Stardust, which is an amazing movie. My hubby also got me balloons, flowers, and cuddly love bug stuffed animal :)
And now on to the question!
Terri C. asked : What is TOBI?
TOBI is a concentrated form of the antibiotic Tobramycin. It is a very powerful antibiotic that has been used for a long time, mostly in IV form. They used to put the same IV form in nebulizers to aerosol it and have CF patients inhale it. From what I hear, this was a 45 minute long form of bad tasting torture. In the mid 90's they decided to try and concentrate the tobramycin down and make it easier and quicker to inhale. They created TOBI and started the clinical trial which I was a part of. Once I was on the drug it showed improvement in my health. The tobramycin antibiotic is very effective against pseudomonas aeruginosa (psuedo for short). Pseudo is a bacteria that is found all over the place that is harmless to the normal population but is especially dangerous for those with compromised immune systems like those with cancer or AIDS, and bad for us kids with CF too. Most people with CF eventually end up having pseudo infection. It becomes a matter of keeping it under control and not letting it flare, as our thick mucus makes it nearly impossibly to completely get rid of.
A person with CF is typically on TOBI for a month, twice a day, then off it for a month. This is to help prevent the pseudo from becoming resistant to the TOBI. As much as it helps, I really don't like taking it. It tastes horrible, it adds another 30 minutes of med time to my day, and it makes the chest very tight, especially in the first week of use. I know how much good it does, but I still have the right to not like it much.
I recently had the chance to be on the newest way they are trying TOBI. It really excites me and I hope it gets approved by the FDA. They take the TOBI and turn it into a powder. You then breath the powder in through a little plastic thing, not much different from the Advair inhalers that they advertise on TV. Five little pills full of powder are breathed in, and the treatment is done. It took me all of five minutes and was awesome. I now miss it as I finished my part of the study and had to go back to normal TOBI.