I’ve fought tooth and nail to not do 7% saline aerosols, basically since the first time I sucked it down at least 2 years ago. It’s nasty! I’ve never been able to do a saltwater rinse after oral surgery, sinus rinses, or swallow seawater. I have a very strong reaction to such a high concentration of saline, almost a gag-reflex. My chest tightens, I start to salivate like there’s a porterhouse in front of me, and my chest tightens some more.
I decided it was going to be worth the effort and discomfort after reading this article over on RunSickBoyRun.com: Hypertonic Saline Solution (7%). Come on back after reading about the empirical evidence that it works and check out my personal experiences in the last few weeks.
It’s worth it, and I can back it up with personal experience now. Sure, it still irritates the heck out of me, but so does the inCourage vest. What’s one more thing? I had a tendancy to cough the entire time I was nebulizing (thankfully with a 7-minute eFlow treatment using PARI Hyper-Salโข available from my neb supplier), at least until this morning. Today, I only coughed once during my treatment, was able to breathe in more solution, and was irritated for less time after I was done. Progress is being made!
I have a roller-coaster relationship with sputum. After IVs, I can’t hock up a loogie to save my life. I managed a little piece smaller than most raisins at clinic on Friday and told them they’d have to grow it out for two weeks to get anything from it. It’s another story as I progress downhill towards needing IVs, when every little cough brings up some gunk and a huge spaz brings up a lot. My periods of massive health and needing IVs are as different as night and day.
This is where the 7% saline comes in: I am able to bring up junk when I’m not massively overrun with an infection. While I’m doing my treatment and for the next 10-15 minutes, I can clear out anywhere from one to 5 loogies. I figured out this morning that adds up over time, assuming my AZLI, Colistine are keeping any growth in check, and creating new volume for me.
What are you willing to do to create genuine new lung volume? Me, I’m willing to suck down salty air for 7 minutes twice a day.
Thanks for telling us about your experience. When people ask how you're feeling, we'll point them to this site.
I guess your Dad's photo comes up with this email address ๐
Yes, computers do have a problem distinguishing who is writing something when the same e-mail is used. ๐
Wow I need to get the Pari Hyper-Sal! The saline irritates me, too (in fact, I just tried doing tonight's treatment and had a hell of a time). It'd certainly help if it only took 7 minutes! But I feel your pain, it's a tough one to take but worth it.
If you are on Colistine at any point, your coordinator can get you in touch with Pharmaceutical Specialties, Inc. in GA to get an eFlow for free and then take the 7% with the second flow head they send you. I use one head for gunky meds and the latest head for the others to rotate them so they don't get clogged. Colistine clogs the head.
This is a good blog post to remind everyone to retry core cf meds if they don't work the first time. Sometimes, it's not the right time or who knows what. Very nice that you shared this experience with others.
It really does take 2-3 weeks of trying to stop irritating things. I guess it's the CFer version of smoking and drinking coffee. I have tried coffee a handfull of times and just can't get into it, thinking “why would anyone want to do this?” I think 7% is the same way.
I have Daisty on this, twice a day when we are fighting, and once a day if not (if we forget, she normally picks something up) She takes it really well for a little 6 year old, and i figure if i can make it part of her life now, it will help all along.
Thanks for stopping by and commenting. Good for you/her. I'll bet it
will be a lot easier to take later if it's something she's always been
on. Some days, I can only suck in the air and then take one or two
fresh air breaths.
I love your post! My brother has CF but he lives in Brazil (I live in California) and his doctor is saying that he really needs Hyper-Sal 0.07 Ampoules when he is using his PARI, but unfortunately it seems like I cannot buy this product here in California without a prescription from a Physician Licensed In The USA.
Any suggestions on how I could buy this product in USA?
Unfortunately, Brazil is not importing this product yet, so my plan was to buy this product here and mail it to Brazil.
Any suggestions???
Thank you!
Patricia
You need Rxs to buy Rx drugs in the US.
We finally got the saline today from clinic. Even though his previous doc had prescribe the 7%, our new doc is starting him off on 3% to see how he tolerates that.
His BMI is 20.8 which is in the normal range for his height. First time in a LONG time. ๐
Great news!