Hypertonic Saline, did my reasearch ...

Kelli · Apr 21, 2007

Please don't think I'm posting, just to post.

I looked up other posts on HS but didn't get all of my questions answered.

I am a bleeder (I haven't bled for 3 weeks now which is a miracle). Well I went to clinic yesterday and we discussed HS. They didn't like the idea at first but after discussing with other dr's they agreed to let me try it.

1. If you bleed and have done or do HS what is your experience? Did it make bleeding worse?

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

5. Shouldn't this be covered by Medicare since you use it in a nebulizer?

Ok, I think that is everything.
Thank you in advance!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 female, CF

Kelli · Apr 21, 2007

Please don't think I'm posting, just to post.

I looked up other posts on HS but didn't get all of my questions answered.

I am a bleeder (I haven't bled for 3 weeks now which is a miracle). Well I went to clinic yesterday and we discussed HS. They didn't like the idea at first but after discussing with other dr's they agreed to let me try it.

1. If you bleed and have done or do HS what is your experience? Did it make bleeding worse?

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

5. Shouldn't this be covered by Medicare since you use it in a nebulizer?

Ok, I think that is everything.
Thank you in advance!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 female, CF

Kelli · Apr 21, 2007

Please don't think I'm posting, just to post.

I looked up other posts on HS but didn't get all of my questions answered.

I am a bleeder (I haven't bled for 3 weeks now which is a miracle). Well I went to clinic yesterday and we discussed HS. They didn't like the idea at first but after discussing with other dr's they agreed to let me try it.

1. If you bleed and have done or do HS what is your experience? Did it make bleeding worse?

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

5. Shouldn't this be covered by Medicare since you use it in a nebulizer?

Ok, I think that is everything.
Thank you in advance!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
29 female, CF

Marjolein · Apr 21, 2007

I can only react to question 2 <img src="i/expressions/face-icon-small-smile.gif" border="0">

I had to try it in the hospital too. They would start a low dose and go higher every time, to see how i reacted to it. And to see how high they could go. I was in hospital for one night i think. They went up in very small steps, but i don't know if that's normal, depends on your pft's i think, mine were below 20% (fev1)

Marjolein · Apr 21, 2007

I can only react to question 2 <img src="i/expressions/face-icon-small-smile.gif" border="0">

I had to try it in the hospital too. They would start a low dose and go higher every time, to see how i reacted to it. And to see how high they could go. I was in hospital for one night i think. They went up in very small steps, but i don't know if that's normal, depends on your pft's i think, mine were below 20% (fev1)

Marjolein · Apr 21, 2007

I can only react to question 2 <img src="i/expressions/face-icon-small-smile.gif" border="0">

I had to try it in the hospital too. They would start a low dose and go higher every time, to see how i reacted to it. And to see how high they could go. I was in hospital for one night i think. They went up in very small steps, but i don't know if that's normal, depends on your pft's i think, mine were below 20% (fev1)

Marjolein · Apr 21, 2007

Ow wait ofcourse i can react to question 3 too hehe.

It does make you cough, guess that's the whole idea behind it. Well not really the cough, but coughing stuff up<img src="i/expressions/face-icon-small-smile.gif" border="0"> That's why you don't want a dose that's too high, as that will make your throat tickle and that way you can't breath in deeply enough. The HS will thin the mucous fast and will help you clear your lungs right after the neb has finished (at least that was my experience)

Marjolein · Apr 21, 2007

Ow wait ofcourse i can react to question 3 too hehe.

It does make you cough, guess that's the whole idea behind it. Well not really the cough, but coughing stuff up<img src="i/expressions/face-icon-small-smile.gif" border="0"> That's why you don't want a dose that's too high, as that will make your throat tickle and that way you can't breath in deeply enough. The HS will thin the mucous fast and will help you clear your lungs right after the neb has finished (at least that was my experience)

Marjolein · Apr 21, 2007

Ow wait ofcourse i can react to question 3 too hehe.

It does make you cough, guess that's the whole idea behind it. Well not really the cough, but coughing stuff up<img src="i/expressions/face-icon-small-smile.gif" border="0"> That's why you don't want a dose that's too high, as that will make your throat tickle and that way you can't breath in deeply enough. The HS will thin the mucous fast and will help you clear your lungs right after the neb has finished (at least that was my experience)

Sakem · Apr 21, 2007

Strat w/ 3%, if u tolerate it, u can always go to 7%, but that sounds like it could be too strong for u, with your bleeding problems. If u r able to tolerate 7%, I would not get it from CF Pharm, u have to mix it. I think it is Foundation Care that has it premixed and they should accept Medicare.

Sakem · Apr 21, 2007

Strat w/ 3%, if u tolerate it, u can always go to 7%, but that sounds like it could be too strong for u, with your bleeding problems. If u r able to tolerate 7%, I would not get it from CF Pharm, u have to mix it. I think it is Foundation Care that has it premixed and they should accept Medicare.

Sakem · Apr 21, 2007

Strat w/ 3%, if u tolerate it, u can always go to 7%, but that sounds like it could be too strong for u, with your bleeding problems. If u r able to tolerate 7%, I would not get it from CF Pharm, u have to mix it. I think it is Foundation Care that has it premixed and they should accept Medicare.

Diane · Apr 21, 2007

I also was looking into starting the HS, but am still reluctant because of hemoptysis problems. I read about those who have done well with it and then there are those who had to stop because of hemoptysis. I was told i'd have to do my first dose at the clinic so they could make sure things go ok, but for some reason i am still reluctant. I did however tell my Doctor if i do decide to try it ( im sure eventually i will) , i will start out at 3% and probably stay with it.

Diane · Apr 21, 2007

I also was looking into starting the HS, but am still reluctant because of hemoptysis problems. I read about those who have done well with it and then there are those who had to stop because of hemoptysis. I was told i'd have to do my first dose at the clinic so they could make sure things go ok, but for some reason i am still reluctant. I did however tell my Doctor if i do decide to try it ( im sure eventually i will) , i will start out at 3% and probably stay with it.

Diane · Apr 21, 2007

I also was looking into starting the HS, but am still reluctant because of hemoptysis problems. I read about those who have done well with it and then there are those who had to stop because of hemoptysis. I was told i'd have to do my first dose at the clinic so they could make sure things go ok, but for some reason i am still reluctant. I did however tell my Doctor if i do decide to try it ( im sure eventually i will) , i will start out at 3% and probably stay with it.

AnD · Apr 21, 2007

<div class="FTQUOTE"><begin quote>Originally posted by: Kelli

I can answer these questions

:

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

According to my doctors, everyone has to have the first dose supervised at the hospital/clinic and be monitored for some amount of time for adverse reactions. They will also have you do an albuterol (or something similar) treatment first.

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others. 

I coughed a lot for the first few weeks. The first dose- lots of coughing. Don't worry about the throwing up- they work in a hospital- it's not like they haven't seen it before

. Just tell them that you need something to throw up in before you get started, just in case. They will appreciated this, as you are trying to be considerate and not throw up on their shoes

. You can (and should) stop for a breather while you are doing the HS, until your coughing calms down, then start again if you can.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

I mix mine and get it from a small, independent, local pharmacy- it is a good bit cheaper than from cfs pharmacy, especially since the first time I ordered it, the .9% wasn't the generic, and cost more than the 10%. I have had the best luck with the small local pharmacies with everything but Colistin (cfs pharmacy gives free H2O and syringes, plus a free neb every 4 or 6 orders). I still order Tobi and Pulmozyme from them, too (free nebs

).

My order from the cfs pharmacy was about $90 to $100 (pre insurance)- $48 for 50 vials of the 10%, a little over $50 for the .9% (50 vials). My local is $40 for 50 vials the 10%, and $7.50 for 50 vials of the .9%, which comes to $47.50, pre insurance. My insurance also only covers a month's worth at a time, so my pharmacy sells me half a box at a time of the 10%.

If you can get the premixed- go for it! I am going to contact them about getting it, if nothing else, to have in the mornings when I have to go somewhere, or for going out of town, etc. when sterilizing the vial twice a day would be a considerable inconvience. I'll pay a little more for that, and use it sparingly .

Hope some of that helps

.

</end quote></div>

AnD · Apr 21, 2007

<div class="FTQUOTE"><begin quote>Originally posted by: Kelli

I can answer these questions

:

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

According to my doctors, everyone has to have the first dose supervised at the hospital/clinic and be monitored for some amount of time for adverse reactions. They will also have you do an albuterol (or something similar) treatment first.

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others. 

I coughed a lot for the first few weeks. The first dose- lots of coughing. Don't worry about the throwing up- they work in a hospital- it's not like they haven't seen it before

. Just tell them that you need something to throw up in before you get started, just in case. They will appreciated this, as you are trying to be considerate and not throw up on their shoes

. You can (and should) stop for a breather while you are doing the HS, until your coughing calms down, then start again if you can.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

I mix mine and get it from a small, independent, local pharmacy- it is a good bit cheaper than from cfs pharmacy, especially since the first time I ordered it, the .9% wasn't the generic, and cost more than the 10%. I have had the best luck with the small local pharmacies with everything but Colistin (cfs pharmacy gives free H2O and syringes, plus a free neb every 4 or 6 orders). I still order Tobi and Pulmozyme from them, too (free nebs

).

My order from the cfs pharmacy was about $90 to $100 (pre insurance)- $48 for 50 vials of the 10%, a little over $50 for the .9% (50 vials). My local is $40 for 50 vials the 10%, and $7.50 for 50 vials of the .9%, which comes to $47.50, pre insurance. My insurance also only covers a month's worth at a time, so my pharmacy sells me half a box at a time of the 10%.

If you can get the premixed- go for it! I am going to contact them about getting it, if nothing else, to have in the mornings when I have to go somewhere, or for going out of town, etc. when sterilizing the vial twice a day would be a considerable inconvience. I'll pay a little more for that, and use it sparingly .

Hope some of that helps

.

</end quote></div>

AnD · Apr 21, 2007

<div class="FTQUOTE"><begin quote>Originally posted by: Kelli

I can answer these questions

:

2. They told me I had to go in for the first time using HS so they can watch me and make sure I don't wheeze/bleed, etc. Is this normal?

According to my doctors, everyone has to have the first dose supervised at the hospital/clinic and be monitored for some amount of time for adverse reactions. They will also have you do an albuterol (or something similar) treatment first.

3. What can I expect? I know that I will cough a lot, I'm just afraid of throwing up in front of others. 

I coughed a lot for the first few weeks. The first dose- lots of coughing. Don't worry about the throwing up- they work in a hospital- it's not like they haven't seen it before

. Just tell them that you need something to throw up in before you get started, just in case. They will appreciated this, as you are trying to be considerate and not throw up on their shoes

. You can (and should) stop for a breather while you are doing the HS, until your coughing calms down, then start again if you can.

4. Do you know how much it will cost from CF Services? Or should I just go thru my local pharmacy (since people aren't always happy with CF services & the might have a waiting list?)

I mix mine and get it from a small, independent, local pharmacy- it is a good bit cheaper than from cfs pharmacy, especially since the first time I ordered it, the .9% wasn't the generic, and cost more than the 10%. I have had the best luck with the small local pharmacies with everything but Colistin (cfs pharmacy gives free H2O and syringes, plus a free neb every 4 or 6 orders). I still order Tobi and Pulmozyme from them, too (free nebs

).

My order from the cfs pharmacy was about $90 to $100 (pre insurance)- $48 for 50 vials of the 10%, a little over $50 for the .9% (50 vials). My local is $40 for 50 vials the 10%, and $7.50 for 50 vials of the .9%, which comes to $47.50, pre insurance. My insurance also only covers a month's worth at a time, so my pharmacy sells me half a box at a time of the 10%.

If you can get the premixed- go for it! I am going to contact them about getting it, if nothing else, to have in the mornings when I have to go somewhere, or for going out of town, etc. when sterilizing the vial twice a day would be a considerable inconvience. I'll pay a little more for that, and use it sparingly .

Hope some of that helps

.

</end quote></div>

Kelli · Apr 22, 2007

Wow, thank you all for your input. I really appreciate it.
I hope all goes well, at least I have some idea of what it will be like and how expensive it will be.

Thanks so much!!!
KELLI

Kelli · Apr 22, 2007

Wow, thank you all for your input. I really appreciate it.
I hope all goes well, at least I have some idea of what it will be like and how expensive it will be.

Thanks so much!!!
KELLI

Hypertonic Saline, did my reasearch ...

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