What do you think?

So what do ya'll think about daily 3PM posts that I have been doing the last several days? Do you mind that some posts may have been written a few days before?

Question Wednesday #3

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.

Question Wednesday #2

No questions....

So.....

I'll make one up!

Hey Talana. I notice that you use Daydee a lot as an Internet name. What is your reason behind that?

I use Daydee because that is the name of my imaginary friend from growing up. I don't know where I got the name from, nor could my mother ever get me to tell her because I would respond, "That's what she told me her name is". It's something that is unique, I've ran into one other user that uses Daydee. I hear it is her real name, named after her father's imaginary friend. I think Daydee may have cheated on me! She didn't let me know there were others before me! Daydee lived in a VW bus and liked bright colors. My Eugene area raising may have a little to do with that!

See how simple that was!

Question Wednesday #1

So since I have less time to blog on Wednesday nights as I have bowling league, I am thinking about dedicating it to answering questions... feel free to comment or email a question and you may just see it answered!

This week's question comes from Moma Grizly:
"What does the vest do? I've heard about CF patients being "pounded" on their backs - is that what the vest does?"

CF patients need some sort of regimen of airway clearance to clear the thick sticky mucus in our lungs that make it hard to breath and promote infection. As a whole, this is referred to as chest pt, and can take a few different forms.

The vest (look at last post for a picture) does the basic work of being pounded on. "Pounding on" refers to the hand or manual percussion therapy that is used to clear the lungs of CF patients. A trained person pounds on the chest with either their hands, a cup shaped piece of soft rubber, or a electric percussor. The therapy loosens the sticky mucus and makes it easier to cough out. It is very uncomfortable as the chest needs to be hit with some force to make a difference. Also the patient must lay in a number of positions to facilitate the airway clearance.
The Vest is very similar to this, but does not require another person to help me. The vest fills with air, then the air vibrates, causing the lungs and airways to vibrate, loosens the mucus and causes coughing. It's annoying but far less than having it done by hand. I still have manual therapy while in the hospital, but use my vest while at home, 20 minutes in the morning and 20 more at night. I like the freedom to still watch the TV, be on the computer, or even talk. There may be a video coming with how funny I sound while on the vest.

There are also other techniques of airway clearance but the vest is the one that has worked best for me and that I have been most willing to do. However, the vest is very cost prohibitive, and before insurance retails for $16,000. Thank the Lord for insurance!
I should be able to publish the next chapter in my history tomorrow, but now off to sleep!