We are back from Sea Grove, Florida and here's a few pics from our vacation I wanted to share (had a wonderful time, btw!!!):
<img src="http://i81.photobucket.com/albums/j213/boxart/signsresized.jpg"> <img src="http://i81.photobucket.com/albums/j213/boxart/AbandAndeeresized.jpg"> <img...
Okay, I decided to go with a portable one with a battery (so I can walk around with it at home if I'm rushed, too <img src="i/expressions/face-icon-small-wink.gif" border="0"> ), and I don't know which one to pick. I will be ordering Monday afternon if I can make a decision by then, so there is...
While I am waiting to see how my insurance changes settle out, I am thinking of getting a portable neb so I can at least get one for the Xopenex and HTS in the car when I need it/want it. I can also do my Accapella in the car, and then just have my Pulmozyme (and Tobi, etc.) to do with my Pari...
I pulled the usual rib muscle/ligament again the other day (same one for the last 20 years or so, it seems ;) ), but this time, I had a new tank bra that I had recently bought, and man, did it make a world of difference! I usually can't wear a tank bra, because I have small shoulders, a fairly...
Has anyone ordered this yet? I keep seeing (from cf services and on the Pari home page) that it will be available "soon", but haven't seen it actually "available.
Has anybody actually gotten it yet?
I called my (local) pharmacy about my 10% HTS to make sure it was in before I picked it up, and they said the had been ordering it everyday for a week, and it keeps coming back as backordered from the manufacturer. Is anybody else having a similar issue?
Well, I have read a little on it (including an article about Pulmozyme not working as well for people with low magnesium- I've had to up mine to twice a day in the last year or so), plus a few other symptoms that may/may not mean I'm low (all my vitamins this last go around of tests were either...
Pulmozyme and Tobi are now considered a "Specialty Drug", and they have 50% copay! up to $5000 a year! (at least there is <i>that</i> cap!)
Please pray that we qualify for some help... I have the numbers for the Genetech Endowment and the Tobi Access Hotline. We qualified for the Genentech one...
<img src="http://i81.photobucket.com/albums/j213/boxart/frusty.gif">
<img src="http://i81.photobucket.com/albums/j213/boxart/stars.gif">
Rant over- I'm feeling better... <img src="i/expressions/face-icon-small-wink.gif" border="0">
Just one of those days...<img...
To set this up, we have a 3 year old daughter who loves to talk. 'nuf said, I think-lol.
We took her with us to look at my parents' new house they are in the process of building (about 20 mins from our house). They had just gotten the sheetrock up, and had the bath tubs, showers, etc. in. So we...
I just got my Xopenex inhaler, and the directions say to rinse it out (instruction picture is under the faucet) with warm water for 30 seconds at least once a week and let it air dry. Is this what everyone else with an inhaler and cf does? Or do I need to boil water to rinse it? How often do you...
Okay, I now know why I didn't know not to rinse my nebs in tap water-(I really hate to post this, but...) I called my nurse to order 8 new neb cups, and she asked why I needed so many? I told her it was because I could be doing 4 nebs at a sitting, and I didn't want to have to wash them that...
Okay, I have a lovely sinus infection <img src="i/expressions/noseblow.gif" border="0"> (made my teeth hurt today for the first time in a while- I'm sure pms isn't helping-grrrrrr...) and have been on Augmentin 850? for over 2 weeks, so I'm thinking it's a no go on the Augmentin <img...
After reading around here, I have decided to try doing my neb/vest order as:
Xopenex (and wait the required mins.)
HTS
Vest
Pulmozyme
It takes a little longer, but I seem to be coughing more up. Any thoughts or experiences?
(I have been coughing so much during treatments this past week...
Okay, I was thinking- since I am supposed to do the Xopenex before the HTS, and the HTS is just saline, is there any problem anyone knows about with doing my Xopenex, and then putting the HTS in the same neb immediately after?
I know I'm lazy, but if I do that, I can wash my nebs and boil...
Well, my GSH Caps from Theranaturals are here, and of course, I can't find my link about how to start it out anywhere. I do remember that I am supposed to start at a 1/4 of a dose, and do that for a week, add another 1/4 for another week (total half a dose), etc. until at the end of the month, I...
I tried to send photobucket links of my art to the email address given, but it was "returned". Any clue what I am doing wrong?<img src="i/expressions/face-icon-small-confused.gif" border="0"> Help?<img src="i/expressions/face-icon-small-blush.gif" border="0">
This is the company listed for my state (they serve Alabama (me), Georgia, S. Carolina, N. Carolina and Virginia) by source cf:
Pharmaceutical Specialties, Inc.
www.psipharmacy.com
I am also interested in what meds I can order from them to go with the eFlow.
Thanks in advance if you can...
Does anyone know what the common percentage is for saline for nasal irrigation?
Especially for a Neti pot (I can find the amounts of kosher salt to sterilized water, but not the % the solution makes). I'm wondering if I can use the left over 10% HTS to make my nasal wash...it may end up being...
Here's the link- in the video link on the right, it says "interview with owner"- that's where he says he has cf:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.kptv.com/news/10725371/detail.html">http://www.kptv.com/news/10725371/detail.html</a>
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