hey Ender!!!

[dramamama]

hey Kiel-
I was just looking over the posts and I was just wanting a little info. You said in February your pfts went up to high 80's...had they been lower for a while before? I guess what I am asking is what were your pfts for the last several appointmants?

and, you never tested for pseudo until after you had done the oo? If this is true, there are several ways to interpret this....one, the oo is helping you clear your lungs and old bugs are starting to come up or two, I don't like two because I am on the oo.

Would you mind emailing me about the pfts and your last several appoints.?

my pfts for example are in the low 60's for fev1...but when I am sick they have gone down to the 40's....my fev1 has been the same for almost 10 years.....I am wondering about the oo and any extra help would be great

hope you are feeling better spirit wise<img src="i/expressions/face-icon-small-smile.gif" border="0">
mandy

 

[Ender]

I'll just respond through this thread, maybe other people are interested in reading this.

Ok...i am fairly infrequent with my doc appointments. My Ok, 3 years ago from about this time, I came to Ottawa with a fev1 of around 80%. I was working at a restaurant and dragging myself down quite a bit (partying, smoking etc). My next several appointments after that, my fev1 dropped to about 75, then 66, and finally 57% predicted in a three year period. I was pretty upset, and kinda nervous....so I decided to start taking a bit better care of myself, and be a bit more proactive. I got hypertonic saline...and that's about when i read Sean's post about the OO.

The last doctor appointment that was 57% was in November...and i got the OO and the HS around that time as well. My last doctors appointment was Feb I think...and my fev was 87%.

I guess I was culturing pseudo at that time as well (feb doc appointment), although they didn't mention it to me. It wasn't until i stopped the oo for about 2 weeks (not because i wanted to, but because i was procrastinating on my next shipment, and there was a lil lee way there) that I started feeling crappy again and called the doc about getting some antibiotics that they informed me I had pseudo and i should come in to see if i can tolerate tobi (i have yet to do this, again, i procrastinate a bit too much). I never cultured it before this.

Now, perhaps you are right, and that the OO killed my staph enough to culture something else....and that my staph was kinda in balance in my lungs and was keeping pseudo at bay.

However, there is another factor. In january, I met another cf'er who had pseudo, and we were pretty close talking in a small crowded bar ( i know, freaking stupid of me, but that's life) and I more than likey caught it from her. I knew the risks and i took them anyways, thinking that nothing would happen from the encounter.

Anyways, I'm gonna try tobi prolly next week and see what happens with that. I feel that I am already a step ahead with my cf in that I am 23 and just recieved pseudo. I think there is still a large arsenal of stuff i can be on the try and control it (I am currently only on pulmicort, oo, HS and some vitamins, other supps.

Kiel

 

[Faust]

You gonna stay on the OO kiel? BTW I IM'd you, you didn't respond.


I'm still feelin amazing on the OO.

 

[Ender]

Yes of course...i love the stuff..

I'm super vigilant with it now..and the HS. Next appointment should be interesting.

It must be my other user account.

 

[Faust]

I bet if you stay vigilant on the OO and HS, and do regular clearance, your PFT's will be way high next appointment!

 

[anonymous]

hey kiel,
thanks for responding. It sounds like the cf encounter could be your culprit....I never tested positive with pseudo until I went to cf camp.....my parents were totally against it, but my godfather, the cf clinic doc, suggested I go so that I could meet other people going through that same illness.....bummer.

I bet you will be able to get rid of it with tobi, hs and oo. You also sound like you have a lot of (obviously) reversible damage...most likely inflamation, not scar tissue.

When I was 23 I struggled too....you will pull through. sometimes you just need a motivator to make it REAL...sounds like pseudo could be your motivator. you are in my thoughts. I can't wait to see how much better you feel in a month or so.

mandy

 

[anonymous]

ya...actually after my little breakdown yesterday, I'm feeling a lot better hehe.

I go in waves of feeling helplessness to wanting to kick cf's ass. I'm in the ass kicking stage right now.

A lot of things are adding up that I didn't necassarily considered before, or cared about before. But I'm working on it. That's what lifes about right?

 

[Ender]

Obviously that was me...

Kiel

 

[Faust]

BTW, you will almost certainly get pseudo anyways, regardless what you do or regardless how hardcore you are preventative wise. You can probably get by through your teens, and maybe even early 20's, but you are pretty much guaranteed to get pseudo eventually if you have CF. The stuff is everywhere, literally everywhere, and our lungs are like giant magnets for it. Perfect environment for it.

 

[Ender]

Ya I knew it was an eventuality...wasn't too worried about it. I actually wish I cultured that sometimes before instead of the staph, cause at least they have preventative treatments.....Colistan, Tobi etc...

Meh, it's all good.