Amikacin ? anyone ever been on it long-term?

[AGRLMK]

I just turned 17 on april 8th, and I go into the hospital April 9th to get started on Amikacin. I have a port, so Im not worried about that, it's the long term dose that I will be on. Doc says that we've ''run out of options'' for treating my Pseudomonas Aruganosa,+ NTM. He said that this will last a long time. Months, maybe years. My port will get de- and then re-accessed over 45 times over the next year...I dont do emla, or any of that stuff, it doesnt bother me...but it does hurt when the same scar tissue gets stuck over and over and over again.

So I was wondering if anyone else had ever had to do this Amikacin. And of course I was wanting some emotional support...this will be tough.

Thanks all for your concern,
Lauren

 

[AGRLMK]

I just turned 17 on april 8th, and I go into the hospital April 9th to get started on Amikacin. I have a port, so Im not worried about that, it's the long term dose that I will be on. Doc says that we've ''run out of options'' for treating my Pseudomonas Aruganosa,+ NTM. He said that this will last a long time. Months, maybe years. My port will get de- and then re-accessed over 45 times over the next year...I dont do emla, or any of that stuff, it doesnt bother me...but it does hurt when the same scar tissue gets stuck over and over and over again.

So I was wondering if anyone else had ever had to do this Amikacin. And of course I was wanting some emotional support...this will be tough.

Thanks all for your concern,
Lauren

 

[AGRLMK]

I just turned 17 on april 8th, and I go into the hospital April 9th to get started on Amikacin. I have a port, so Im not worried about that, it's the long term dose that I will be on. Doc says that we've ''run out of options'' for treating my Pseudomonas Aruganosa,+ NTM. He said that this will last a long time. Months, maybe years. My port will get de- and then re-accessed over 45 times over the next year...I dont do emla, or any of that stuff, it doesnt bother me...but it does hurt when the same scar tissue gets stuck over and over and over again.

So I was wondering if anyone else had ever had to do this Amikacin. And of course I was wanting some emotional support...this will be tough.

Thanks all for your concern,
Lauren

 

[AGRLMK]

I just turned 17 on april 8th, and I go into the hospital April 9th to get started on Amikacin. I have a port, so Im not worried about that, it's the long term dose that I will be on. Doc says that we've ''run out of options'' for treating my Pseudomonas Aruganosa,+ NTM. He said that this will last a long time. Months, maybe years. My port will get de- and then re-accessed over 45 times over the next year...I dont do emla, or any of that stuff, it doesnt bother me...but it does hurt when the same scar tissue gets stuck over and over and over again.

So I was wondering if anyone else had ever had to do this Amikacin. And of course I was wanting some emotional support...this will be tough.

Thanks all for your concern,
Lauren

 

[AGRLMK]

I just turned 17 on april 8th, and I go into the hospital April 9th to get started on Amikacin. I have a port, so Im not worried about that, it's the long term dose that I will be on. Doc says that we've ''run out of options'' for treating my Pseudomonas Aruganosa,+ NTM. He said that this will last a long time. Months, maybe years. My port will get de- and then re-accessed over 45 times over the next year...I dont do emla, or any of that stuff, it doesnt bother me...but it does hurt when the same scar tissue gets stuck over and over and over again.
<br />
<br />So I was wondering if anyone else had ever had to do this Amikacin. And of course I was wanting some emotional support...this will be tough.
<br />
<br />Thanks all for your concern,
<br />Lauren

 

[Sevenstars]

Few days late reply, but I was in a similar situation when I was 18. They only did amikacin for 8 weeks though. They did it in conjunction with cefoxitin to treat my NTM, and it hasn't been on a culture since then, so I guess it did the trick.

Oh and as for the port accesses, I found the opposite to be true - as it gets more and more scarred in that little area, you don't feel it at all. The biggest problem for me is the TAPE. Try to deaccess it yourself a few hours before your nurse is scheduled to come re-access it, so you can let the site breathe, get a shower, etc. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tell your dr you want to do that so they show you the proper way to deaccess if you don't know already. Good luck, I hope it nukes those bugs for you!

 

[Sevenstars]

Few days late reply, but I was in a similar situation when I was 18. They only did amikacin for 8 weeks though. They did it in conjunction with cefoxitin to treat my NTM, and it hasn't been on a culture since then, so I guess it did the trick.

Oh and as for the port accesses, I found the opposite to be true - as it gets more and more scarred in that little area, you don't feel it at all. The biggest problem for me is the TAPE. Try to deaccess it yourself a few hours before your nurse is scheduled to come re-access it, so you can let the site breathe, get a shower, etc. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tell your dr you want to do that so they show you the proper way to deaccess if you don't know already. Good luck, I hope it nukes those bugs for you!

 

[Sevenstars]

Few days late reply, but I was in a similar situation when I was 18. They only did amikacin for 8 weeks though. They did it in conjunction with cefoxitin to treat my NTM, and it hasn't been on a culture since then, so I guess it did the trick.

Oh and as for the port accesses, I found the opposite to be true - as it gets more and more scarred in that little area, you don't feel it at all. The biggest problem for me is the TAPE. Try to deaccess it yourself a few hours before your nurse is scheduled to come re-access it, so you can let the site breathe, get a shower, etc. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tell your dr you want to do that so they show you the proper way to deaccess if you don't know already. Good luck, I hope it nukes those bugs for you!

 

[Sevenstars]

Few days late reply, but I was in a similar situation when I was 18. They only did amikacin for 8 weeks though. They did it in conjunction with cefoxitin to treat my NTM, and it hasn't been on a culture since then, so I guess it did the trick.

Oh and as for the port accesses, I found the opposite to be true - as it gets more and more scarred in that little area, you don't feel it at all. The biggest problem for me is the TAPE. Try to deaccess it yourself a few hours before your nurse is scheduled to come re-access it, so you can let the site breathe, get a shower, etc. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tell your dr you want to do that so they show you the proper way to deaccess if you don't know already. Good luck, I hope it nukes those bugs for you!

 

[Sevenstars]

Few days late reply, but I was in a similar situation when I was 18. They only did amikacin for 8 weeks though. They did it in conjunction with cefoxitin to treat my NTM, and it hasn't been on a culture since then, so I guess it did the trick.
<br />
<br />Oh and as for the port accesses, I found the opposite to be true - as it gets more and more scarred in that little area, you don't feel it at all. The biggest problem for me is the TAPE. Try to deaccess it yourself a few hours before your nurse is scheduled to come re-access it, so you can let the site breathe, get a shower, etc. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Tell your dr you want to do that so they show you the proper way to deaccess if you don't know already. Good luck, I hope it nukes those bugs for you!

 

[Jane]

My kids were on inhaled amikacin for a long time. Then they were on imipenem for the NTM for six months. Josh got his port after 2 months because his picc kept getting weird. Jesse had a picc the whole time (I think he changed it twice)

At first they had doses every 6 hours!!! That was the rough part, we just couldn't do anything. We eventually got a portable pump so we could get them out of the house.

The worse part was getting used to the schedule, but it worked out. The best part is it worked for us! It sounds like a long time when they describe it, but it goes quick.

Good luck

 

[Jane]

My kids were on inhaled amikacin for a long time. Then they were on imipenem for the NTM for six months. Josh got his port after 2 months because his picc kept getting weird. Jesse had a picc the whole time (I think he changed it twice)

At first they had doses every 6 hours!!! That was the rough part, we just couldn't do anything. We eventually got a portable pump so we could get them out of the house.

The worse part was getting used to the schedule, but it worked out. The best part is it worked for us! It sounds like a long time when they describe it, but it goes quick.

Good luck

 

[Jane]

My kids were on inhaled amikacin for a long time. Then they were on imipenem for the NTM for six months. Josh got his port after 2 months because his picc kept getting weird. Jesse had a picc the whole time (I think he changed it twice)

At first they had doses every 6 hours!!! That was the rough part, we just couldn't do anything. We eventually got a portable pump so we could get them out of the house.

The worse part was getting used to the schedule, but it worked out. The best part is it worked for us! It sounds like a long time when they describe it, but it goes quick.

Good luck

 

[Jane]

My kids were on inhaled amikacin for a long time. Then they were on imipenem for the NTM for six months. Josh got his port after 2 months because his picc kept getting weird. Jesse had a picc the whole time (I think he changed it twice)

At first they had doses every 6 hours!!! That was the rough part, we just couldn't do anything. We eventually got a portable pump so we could get them out of the house.

The worse part was getting used to the schedule, but it worked out. The best part is it worked for us! It sounds like a long time when they describe it, but it goes quick.

Good luck

 

[Jane]

My kids were on inhaled amikacin for a long time. Then they were on imipenem for the NTM for six months. Josh got his port after 2 months because his picc kept getting weird. Jesse had a picc the whole time (I think he changed it twice)
<br />
<br />At first they had doses every 6 hours!!! That was the rough part, we just couldn't do anything. We eventually got a portable pump so we could get them out of the house.
<br />
<br />The worse part was getting used to the schedule, but it worked out. The best part is it worked for us! It sounds like a long time when they describe it, but it goes quick.
<br />
<br />Good luck