Frustrated!!...TOBI

A

ashmomo

New member
Well, we started TOBI a couple weeks ago and the script said to do 1/2 vial twice a day for 28 days. We have been doing as directed and I started to notice that what we have will not last for 28 days! We are almost out! I am under the impression now that we were to 'save' the other half of each vial for later use, which I was unaware of since when we used Sodium Chloride 3%, we were to use the 3ml we needed then throw the rest away to avoid contamination. Now I don't know what we are to do! I guess I am going to have to call the clinic and ask them what to do. In a way I feel dumb, but I also feel that I was not instructed correctly and have 12 other prescripts for her to worry about, not incuding my other daughter's meds too! So how was I supposed to know??!?! I am just frustrated that we don't have all the med she needs now to finish the 28 days and we probably can't get it since it is so expensive.

Anybody ever had a problem of this sort? What should I do? I guess I have to call the clinic tomorrow for starters.
 
A

ashmomo

New member
Well, we started TOBI a couple weeks ago and the script said to do 1/2 vial twice a day for 28 days. We have been doing as directed and I started to notice that what we have will not last for 28 days! We are almost out! I am under the impression now that we were to 'save' the other half of each vial for later use, which I was unaware of since when we used Sodium Chloride 3%, we were to use the 3ml we needed then throw the rest away to avoid contamination. Now I don't know what we are to do! I guess I am going to have to call the clinic and ask them what to do. In a way I feel dumb, but I also feel that I was not instructed correctly and have 12 other prescripts for her to worry about, not incuding my other daughter's meds too! So how was I supposed to know??!?! I am just frustrated that we don't have all the med she needs now to finish the 28 days and we probably can't get it since it is so expensive.

Anybody ever had a problem of this sort? What should I do? I guess I have to call the clinic tomorrow for starters.
 
A

ashmomo

New member
Well, we started TOBI a couple weeks ago and the script said to do 1/2 vial twice a day for 28 days. We have been doing as directed and I started to notice that what we have will not last for 28 days! We are almost out! I am under the impression now that we were to 'save' the other half of each vial for later use, which I was unaware of since when we used Sodium Chloride 3%, we were to use the 3ml we needed then throw the rest away to avoid contamination. Now I don't know what we are to do! I guess I am going to have to call the clinic and ask them what to do. In a way I feel dumb, but I also feel that I was not instructed correctly and have 12 other prescripts for her to worry about, not incuding my other daughter's meds too! So how was I supposed to know??!?! I am just frustrated that we don't have all the med she needs now to finish the 28 days and we probably can't get it since it is so expensive.

Anybody ever had a problem of this sort? What should I do? I guess I have to call the clinic tomorrow for starters.
 
A

ashmomo

New member
Well, we started TOBI a couple weeks ago and the script said to do 1/2 vial twice a day for 28 days. We have been doing as directed and I started to notice that what we have will not last for 28 days! We are almost out! I am under the impression now that we were to 'save' the other half of each vial for later use, which I was unaware of since when we used Sodium Chloride 3%, we were to use the 3ml we needed then throw the rest away to avoid contamination. Now I don't know what we are to do! I guess I am going to have to call the clinic and ask them what to do. In a way I feel dumb, but I also feel that I was not instructed correctly and have 12 other prescripts for her to worry about, not incuding my other daughter's meds too! So how was I supposed to know??!?! I am just frustrated that we don't have all the med she needs now to finish the 28 days and we probably can't get it since it is so expensive.

Anybody ever had a problem of this sort? What should I do? I guess I have to call the clinic tomorrow for starters.
 
A

ashmomo

New member
Well, we started TOBI a couple weeks ago and the script said to do 1/2 vial twice a day for 28 days. We have been doing as directed and I started to notice that what we have will not last for 28 days! We are almost out! I am under the impression now that we were to 'save' the other half of each vial for later use, which I was unaware of since when we used Sodium Chloride 3%, we were to use the 3ml we needed then throw the rest away to avoid contamination. Now I don't know what we are to do! I guess I am going to have to call the clinic and ask them what to do. In a way I feel dumb, but I also feel that I was not instructed correctly and have 12 other prescripts for her to worry about, not incuding my other daughter's meds too! So how was I supposed to know??!?! I am just frustrated that we don't have all the med she needs now to finish the 28 days and we probably can't get it since it is so expensive.
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<br />Anybody ever had a problem of this sort? What should I do? I guess I have to call the clinic tomorrow for starters.
 
R

Ratatosk

Administrator
Staff member
Each box of tobi 56 vials in it for 28 days for a normal person using one vial twice a day. DS was on a full vial, but was switched to half earlier this year. We measure out half in the morning, then I put it in a snack baggie in the fridge for use after school.
 
R

Ratatosk

Administrator
Staff member
Each box of tobi 56 vials in it for 28 days for a normal person using one vial twice a day. DS was on a full vial, but was switched to half earlier this year. We measure out half in the morning, then I put it in a snack baggie in the fridge for use after school.
 
R

Ratatosk

Administrator
Staff member
Each box of tobi 56 vials in it for 28 days for a normal person using one vial twice a day. DS was on a full vial, but was switched to half earlier this year. We measure out half in the morning, then I put it in a snack baggie in the fridge for use after school.
 
R

Ratatosk

Administrator
Staff member
Each box of tobi 56 vials in it for 28 days for a normal person using one vial twice a day. DS was on a full vial, but was switched to half earlier this year. We measure out half in the morning, then I put it in a snack baggie in the fridge for use after school.
 
R

Ratatosk

Administrator
Staff member
Each box of tobi 56 vials in it for 28 days for a normal person using one vial twice a day. DS was on a full vial, but was switched to half earlier this year. We measure out half in the morning, then I put it in a snack baggie in the fridge for use after school.
 
A

ashmomo

New member
They just sent us a zip lock with some packages in it...now I am not sure how many...I just assumed there was 1 vial for each treatment, now am under the impression I was to save each half for later use. (which was no the case with the other nebs we have...they specifically said NOT to save the extra due to risk of contamination). I talked to the nurse at the clinic today and she is calling the CF pharmacy to see if we can get more sent out. Otherwise she said she has some at the clinic, which we have an appt Tuesday and we have enough for 4 days left so that would work (as it is a 40 minute drive to the clinic). We'll see what happens. I think to begin with they only gave us the 'half' presciption, we did not get the full box of 56 vials...must have only got 28 since she was doing half. Oh well, too late now! Hopefully we can get it straightened out and get her the rest of the med.
 
A

ashmomo

New member
They just sent us a zip lock with some packages in it...now I am not sure how many...I just assumed there was 1 vial for each treatment, now am under the impression I was to save each half for later use. (which was no the case with the other nebs we have...they specifically said NOT to save the extra due to risk of contamination). I talked to the nurse at the clinic today and she is calling the CF pharmacy to see if we can get more sent out. Otherwise she said she has some at the clinic, which we have an appt Tuesday and we have enough for 4 days left so that would work (as it is a 40 minute drive to the clinic). We'll see what happens. I think to begin with they only gave us the 'half' presciption, we did not get the full box of 56 vials...must have only got 28 since she was doing half. Oh well, too late now! Hopefully we can get it straightened out and get her the rest of the med.
 
A

ashmomo

New member
They just sent us a zip lock with some packages in it...now I am not sure how many...I just assumed there was 1 vial for each treatment, now am under the impression I was to save each half for later use. (which was no the case with the other nebs we have...they specifically said NOT to save the extra due to risk of contamination). I talked to the nurse at the clinic today and she is calling the CF pharmacy to see if we can get more sent out. Otherwise she said she has some at the clinic, which we have an appt Tuesday and we have enough for 4 days left so that would work (as it is a 40 minute drive to the clinic). We'll see what happens. I think to begin with they only gave us the 'half' presciption, we did not get the full box of 56 vials...must have only got 28 since she was doing half. Oh well, too late now! Hopefully we can get it straightened out and get her the rest of the med.
 
A

ashmomo

New member
They just sent us a zip lock with some packages in it...now I am not sure how many...I just assumed there was 1 vial for each treatment, now am under the impression I was to save each half for later use. (which was no the case with the other nebs we have...they specifically said NOT to save the extra due to risk of contamination). I talked to the nurse at the clinic today and she is calling the CF pharmacy to see if we can get more sent out. Otherwise she said she has some at the clinic, which we have an appt Tuesday and we have enough for 4 days left so that would work (as it is a 40 minute drive to the clinic). We'll see what happens. I think to begin with they only gave us the 'half' presciption, we did not get the full box of 56 vials...must have only got 28 since she was doing half. Oh well, too late now! Hopefully we can get it straightened out and get her the rest of the med.
 
A

ashmomo

New member
They just sent us a zip lock with some packages in it...now I am not sure how many...I just assumed there was 1 vial for each treatment, now am under the impression I was to save each half for later use. (which was no the case with the other nebs we have...they specifically said NOT to save the extra due to risk of contamination). I talked to the nurse at the clinic today and she is calling the CF pharmacy to see if we can get more sent out. Otherwise she said she has some at the clinic, which we have an appt Tuesday and we have enough for 4 days left so that would work (as it is a 40 minute drive to the clinic). We'll see what happens. I think to begin with they only gave us the 'half' presciption, we did not get the full box of 56 vials...must have only got 28 since she was doing half. Oh well, too late now! Hopefully we can get it straightened out and get her the rest of the med.
 
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