Hypertonic Saline

anonymous

New member
So, I am going to be trying this stuff on the month that I am not on Tobi since that is when I tend to have problems. I just do not feel as well and cough more when not on tobi. Assuming all goes okay, insurance wise and I can tolerate it, what do you think who is on it. Do you like it? Do you notice a difference? Did your insurance company cover it? I am getting it thru my CF Clinic who is ordering it thru a company called Foundation Care and they supply it premixed.....YEAH!!!

Tell me what ya 'all think?


Jennifer 34 years old with CF and CFRD

Forgot to log in but I am giggles
 

anonymous

New member
Yes, Yes and Yes. Give it a try, I think you will like it. Don't get discouraged if it makes you cough more the first couple of weeks.
 

JazzysMom

New member
I loved hypertonic saline, My insurance did cover it, but I had to mix to the 7%. It made me cough a ton. A real lot in the beginning, but I knew if I stuck it out that it would ease which it did. I coughed up more using that then I ever did just doing my vest. Unfortunately because of recent problems the saline is on hold. Good Luck!
 

Scarlett81

New member
i use it too-i love how much it makes me cough. don't be surprised if you get a little worse before u get better though. and don't be surprised if it burns alot at first. it took me a week to get used to it. great stuff though. moves deep mucus out.
 

anonymous

New member
They put my daugther on it a few months ago. It did take a few weeks before she started coughing a little more (she's not much of a producer), but now she'll cough more during therapy or we try and make her cough. She also does this type of breathing exercise, which takes about 3 minutes, and that really helps.

About the Saline mixture, I just did a little research on that. Right now we buy the 10% sodium chloride in vials. We have to mix it with 6 cc's of sterile water. After that is mixed together, we have to pull out 5 cc's and that is what she nebs. I asked about the pre-mixed vials, because we do a lot of after school activities and travel quite frequently. So having them ready to use in those situations would be a lot easier and convenient, not to mention more sterile. I also will be getting them from Foundation Care, which is a compounding pharmacy. (I also didn't know what compounding pharmacy meant.) Since they will make whatever you want and what the doctor prescribes, insurance doesn't cover it. They told me it costs about $.60 per vial. So if we got a 30 month supply, it would cost us $18.00. I'm going to give it a try, because we only would use them approx 2 times a week.

The other way, our insurance does cover it and since we use the saline with every therapy (3-4 times a day) we will do it this way. But I don't mind paying the extra when it's a convenience and it's rare.

Hope this helps!
 

anonymous

New member
Amy - curious what led to having your gallbladder removed and how it went? Two years ago I had a pain in my upper left back that hurt more when I coughed and a low grade fever. I was sure it was lung pain but they found out I have gall stones and think that could have been the problem. With 2 weeks of IV's the issue went away and they put me on Actigal -but now nearly two yrs later the issue is back. I think they might suggest getting my gall bladder out so I was just curious about your symptoms.

Maureen
36,CF
 

CowTown

New member
Personally, I figure the HS is doing good things for my lungs, but I can't tell. I cough when I do the treatments but I usually do anyways. I've read that it has shown to increase lung function, but I haven't had the amazing feeling from it as others have.

I'm glad I'm taking it, but I can't tell that it's so great.

If I close my eyes and picture myself somewhere.....I see myself sitting in the ocean with a mouthful of waves. It's very tasy stuff.
 

AttyMom

New member
I'm supposed to go on Hypertonic Saline too...but CF Services Pharmacy is still out, and I haven't been able to get it elsewhere yet. Does anyone have any updates about the backlog at CF Services Pharmacy?
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MyNewfy</b></i>

It's very tasy stuff.</end quote></div>


There is your problem, you aren't suppose to drink it.
 

Emily65Roses

New member
So I had my appt today and am going to start HS when it comes in. My doc figured I could give it a try, see what it does. He said generally it either really helps people, or they hate it.

I see a lot of "Yes I like it, it works" responses. Curious for anyone who didn't like it??? Why didn't you like it, how did it make you feel? I'm wondering what it is I may be in for. And does it ever produce blood?
 

anonymous

New member
I haven't felt any better since starting it. Actually I've had more shortness of breath lately but I'm not sure its caused by the H. Saline. The one thing it does do is that it makes me cough up more mucus than ever before and that must be a good thing.
 

sarabeth87

New member
i'm suppose to go in a month and try it first in the doctors office and if all goes well, they are gonna put me on it. i don't know if my insurance covers it. i tried to find out bcuz it's not on their list of medicine (which is a very long list, just about every medicine imaginable) well i called them, but no one has ever heard of it.
 

anonymous

New member
Kelly,
All we see here are the rave reviews of HS. Thank you for sharing your not-so-terrific review. I'm sorry to hear it hasn't helped you as it has helped the others. I have a question: how long have you been using it prior to making youir comments. Hang in there.

Kara
 

Liza

New member
My oldest daughter started it about a month ago. It went well until she started her TOBI and then it or the TOBI started irritating her throat. She uses the Pari Neb with it and she had to remove the top so that it didn't irritate so much, that seemed to work until she started the TOBI. She ended up stopping the HS and just started back up when she was done with the TOBI. Wierd, I'm not sure.

Now, my younger daughter is on the HS, coincidentally now on TOBI too, and it irritated her throat so much that she had to stop after the first treatment. She was almost hoarse for three days with a raspy cough. We stopped the HS and are going to try it again when she is finished with the TOBI.

Although my oldest uses a Pari Neb with her TOBI, my younger daughter uses a regular disposable neb because it irritates her throat and she says she can't breathe.

We are determined that the HS is a good thing since they do so well when at the beach and oddly even more so down in the Fl. Keys. I swear it's way more salty there than any place I've even been.

Just wondering if anyone else experienced throat irritation?

Liza
(mom of 2teen girls w/CF)
 

Brad

New member
I got the ok from my Doc last friday and placed the order the same day,

The Cf pharm, was out so I placed another order with a local
pharm today, they said it will be in tomorrow or wed,,,,,,,
 

Lilith

New member
Well...I wouldn't say I <i>like</i> it, considering it makes me cough to the point where I nearly puke <img src="i/expressions/face-icon-small-tongue.gif" border="0"> But as far as an effective expectorant, I can't imagine anything better. It certainly clears me out, and keeps me breathing well for hours, if not the whole day. Like I said, you'll cough like no tomorrow, but I think it's worth it.

My doc did say, however, that it could take months to clear out your lungs of all the crap that's been in there for a while, but after that, the coughing fits shouldn't be so bad.
 

Sunnie

New member
So far I like it pretty well. The first few days of using it I was coughing up chunks of stuff (I know nasty). It does burn the throat when first starting out. Now it's not so bad and I can do the full time my doctor prescribed. I find that I cough less throughout the day and I can speed up my walking a bit now. Other than that though there isn't a whole lot of noticable difference. I still have coughing spasms though. I find that I'm more thirsty than usual since starting it though. In June my doctor will see if it raises my lung function at all so I will post results in my blog then.
 
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