Narcotics Pre-Transplant

theLostMiler · Dec 18, 2009

I was going to suggest asking about torodol as well.

I dont know what PT is though havoc, and I didnt know it could be used for only 5 days.

when i had my bowel obstruction i got it almost 2 weeks.

I dontknow much about it except it is non-narcotic.

theLostMiler · Dec 18, 2009

I was going to suggest asking about torodol as well.

I dont know what PT is though havoc, and I didnt know it could be used for only 5 days.

when i had my bowel obstruction i got it almost 2 weeks.

I dontknow much about it except it is non-narcotic.

theLostMiler · Dec 18, 2009

I was going to suggest asking about torodol as well.

I dont know what PT is though havoc, and I didnt know it could be used for only 5 days.

when i had my bowel obstruction i got it almost 2 weeks.

I dontknow much about it except it is non-narcotic.

theLostMiler · Dec 18, 2009

I was going to suggest asking about torodol as well.

I dont know what PT is though havoc, and I didnt know it could be used for only 5 days.

when i had my bowel obstruction i got it almost 2 weeks.

I dontknow much about it except it is non-narcotic.

theLostMiler · Dec 18, 2009

I was going to suggest asking about torodol as well.
 
 I dont know what PT is though havoc, and I didnt know it could be used for only 5 days.
 
 when i had my bowel obstruction i got it almost 2 weeks.
 
 I dontknow much about it except it is non-narcotic.

Liza · Dec 18, 2009

Hi, I can't speak about the anti anxiety meds. but I can say a little about the pain meds.

One reason they may be hesitant about pain meds. is so she doesn't develop a tolerance for them. That was Anna's concern. She was on morphine pills pre-tx. This is what happened with her after being put on the pain meds...

Anna was going to be listed at Stanford but was in so much pain before we could relocate that she was put on morphine. This helped greatly. She was listed and her tx team had no problem with her being on the morphine. Her new adult CF doc at Lucille Packard told her to take the pills and the solutabs because she needed them. She was afraid of developing a tolerance for tx so she tried to wein off them after a month. No problem until about day three. The pain returned. So she started them again with orders to not try and wein off them because she needed them and to not worry about transplant because they would keep her pain under control. Her CF doc worked directly with her tx clinic. I will add that Anna waited 5.5 months for her call. She'd been on morphine for 6 months.

Yes narcotics can suppress your breathing but her docs were not as concerned with that as they were with her pain.

Perhaps she needs to talk to her tx clinic. Although Anna's didn't do any prescribing until post tx. Things were just run by them.

Liza · Dec 18, 2009

Hi, I can't speak about the anti anxiety meds. but I can say a little about the pain meds.

One reason they may be hesitant about pain meds. is so she doesn't develop a tolerance for them. That was Anna's concern. She was on morphine pills pre-tx. This is what happened with her after being put on the pain meds...

Anna was going to be listed at Stanford but was in so much pain before we could relocate that she was put on morphine. This helped greatly. She was listed and her tx team had no problem with her being on the morphine. Her new adult CF doc at Lucille Packard told her to take the pills and the solutabs because she needed them. She was afraid of developing a tolerance for tx so she tried to wein off them after a month. No problem until about day three. The pain returned. So she started them again with orders to not try and wein off them because she needed them and to not worry about transplant because they would keep her pain under control. Her CF doc worked directly with her tx clinic. I will add that Anna waited 5.5 months for her call. She'd been on morphine for 6 months.

Yes narcotics can suppress your breathing but her docs were not as concerned with that as they were with her pain.

Perhaps she needs to talk to her tx clinic. Although Anna's didn't do any prescribing until post tx. Things were just run by them.

Liza · Dec 18, 2009

Hi, I can't speak about the anti anxiety meds. but I can say a little about the pain meds.

One reason they may be hesitant about pain meds. is so she doesn't develop a tolerance for them. That was Anna's concern. She was on morphine pills pre-tx. This is what happened with her after being put on the pain meds...

Anna was going to be listed at Stanford but was in so much pain before we could relocate that she was put on morphine. This helped greatly. She was listed and her tx team had no problem with her being on the morphine. Her new adult CF doc at Lucille Packard told her to take the pills and the solutabs because she needed them. She was afraid of developing a tolerance for tx so she tried to wein off them after a month. No problem until about day three. The pain returned. So she started them again with orders to not try and wein off them because she needed them and to not worry about transplant because they would keep her pain under control. Her CF doc worked directly with her tx clinic. I will add that Anna waited 5.5 months for her call. She'd been on morphine for 6 months.

Yes narcotics can suppress your breathing but her docs were not as concerned with that as they were with her pain.

Perhaps she needs to talk to her tx clinic. Although Anna's didn't do any prescribing until post tx. Things were just run by them.

Liza · Dec 18, 2009

Hi, I can't speak about the anti anxiety meds. but I can say a little about the pain meds.

One reason they may be hesitant about pain meds. is so she doesn't develop a tolerance for them. That was Anna's concern. She was on morphine pills pre-tx. This is what happened with her after being put on the pain meds...

Anna was going to be listed at Stanford but was in so much pain before we could relocate that she was put on morphine. This helped greatly. She was listed and her tx team had no problem with her being on the morphine. Her new adult CF doc at Lucille Packard told her to take the pills and the solutabs because she needed them. She was afraid of developing a tolerance for tx so she tried to wein off them after a month. No problem until about day three. The pain returned. So she started them again with orders to not try and wein off them because she needed them and to not worry about transplant because they would keep her pain under control. Her CF doc worked directly with her tx clinic. I will add that Anna waited 5.5 months for her call. She'd been on morphine for 6 months.

Yes narcotics can suppress your breathing but her docs were not as concerned with that as they were with her pain.

Perhaps she needs to talk to her tx clinic. Although Anna's didn't do any prescribing until post tx. Things were just run by them.

Liza · Dec 18, 2009

Hi, I can't speak about the anti anxiety meds. but I can say a little about the pain meds.
 
 One reason they may be hesitant about pain meds. is so she doesn't develop a tolerance for them. That was Anna's concern. She was on morphine pills pre-tx. This is what happened with her after being put on the pain meds...
 
 Anna was going to be listed at Stanford but was in so much pain before we could relocate that she was put on morphine. This helped greatly. She was listed and her tx team had no problem with her being on the morphine. Her new adult CF doc at Lucille Packard told her to take the pills and the solutabs because she needed them. She was afraid of developing a tolerance for tx so she tried to wein off them after a month. No problem until about day three. The pain returned. So she started them again with orders to not try and wein off them because she needed them and to not worry about transplant because they would keep her pain under control. Her CF doc worked directly with her tx clinic. I will add that Anna waited 5.5 months for her call. She'd been on morphine for 6 months.
 
 Yes narcotics can suppress your breathing but her docs were not as concerned with that as they were with her pain.
 
 Perhaps she needs to talk to her tx clinic. Although Anna's didn't do any prescribing until post tx. Things were just run by them.

nu65 · Dec 19, 2009

I haven't had troubles getting narcotics necessarily. My CF drs do not like to use narcs, ant my transplant drs recommend first trying hihg doses of motrin but everyone's pain is different and narcotics do affect mucus, from my experiences. I'm on motrin all the time and currently on percocets to try to combat pleuritic pain in my lower chest. I hope your friend finds some relief! It's great that you're watching out for her!

nu65 · Dec 19, 2009

I haven't had troubles getting narcotics necessarily. My CF drs do not like to use narcs, ant my transplant drs recommend first trying hihg doses of motrin but everyone's pain is different and narcotics do affect mucus, from my experiences. I'm on motrin all the time and currently on percocets to try to combat pleuritic pain in my lower chest. I hope your friend finds some relief! It's great that you're watching out for her!

nu65 · Dec 19, 2009

I haven't had troubles getting narcotics necessarily. My CF drs do not like to use narcs, ant my transplant drs recommend first trying hihg doses of motrin but everyone's pain is different and narcotics do affect mucus, from my experiences. I'm on motrin all the time and currently on percocets to try to combat pleuritic pain in my lower chest. I hope your friend finds some relief! It's great that you're watching out for her!

nu65 · Dec 19, 2009

I haven't had troubles getting narcotics necessarily. My CF drs do not like to use narcs, ant my transplant drs recommend first trying hihg doses of motrin but everyone's pain is different and narcotics do affect mucus, from my experiences. I'm on motrin all the time and currently on percocets to try to combat pleuritic pain in my lower chest. I hope your friend finds some relief! It's great that you're watching out for her!

nu65 · Dec 19, 2009

I haven't had troubles getting narcotics necessarily. My CF drs do not like to use narcs, ant my transplant drs recommend first trying hihg doses of motrin but everyone's pain is different and narcotics do affect mucus, from my experiences. I'm on motrin all the time and currently on percocets to try to combat pleuritic pain in my lower chest. I hope your friend finds some relief! It's great that you're watching out for her!

juliepie · Dec 22, 2009

this post is about me actually... tsk tsk, haley! haha

anyway, the situation is that i've been listed for 10 months so far, with one false call in september. my pfts average between 18 and 20, and i can get up to about 24 in the hospital. i'm just very frustrated because my main CF doctor won't advise me to take anything other than tylenol (which we know does nothing for CF-level issues). She will not let me take NSAIDS for risk of hemoptosizing (which i've never done, so i pop 800 mg advil twice a day).

she understands where i'm coming from, that i pretty much cannot function at more than a vegetative level if i don't take anything. i completely understand the risks of respiratory depression and am religious about wearing my oxygen and monitoring my sats, but all i really want to do is to be able to get up and moving! her solution was to "do what the rheumatoid arthritis people do" and start off slowly in the morning and then work up to doing stuff like errands in the afternoon- but by that time i'm wiped out from just being awake and breathing.

she's allowing me to take ativan as needed, but nothing on a regular schedule. she hates when i take it in the hospital because heaven forbid i sleep past 8 am and delay my respiratory treatments.

thanks everyone for the input! i really appreciate it. I think my biggest problem at the moment is simply being frustrated at the lack of progress with transplant. I have been listed for almost a year, it took me over a year to get listed, and now i'm still waiting and watching my lung function decline. i'm hoping for my call but it's hard to be optimistic at this point!

again, thanks for the responses <img src="i/expressions/face-icon-small-smile.gif" border="0"> and to miss haley for posting this for me lol

juliepie · Dec 22, 2009

this post is about me actually... tsk tsk, haley! haha

anyway, the situation is that i've been listed for 10 months so far, with one false call in september. my pfts average between 18 and 20, and i can get up to about 24 in the hospital. i'm just very frustrated because my main CF doctor won't advise me to take anything other than tylenol (which we know does nothing for CF-level issues). She will not let me take NSAIDS for risk of hemoptosizing (which i've never done, so i pop 800 mg advil twice a day).

she understands where i'm coming from, that i pretty much cannot function at more than a vegetative level if i don't take anything. i completely understand the risks of respiratory depression and am religious about wearing my oxygen and monitoring my sats, but all i really want to do is to be able to get up and moving! her solution was to "do what the rheumatoid arthritis people do" and start off slowly in the morning and then work up to doing stuff like errands in the afternoon- but by that time i'm wiped out from just being awake and breathing.

she's allowing me to take ativan as needed, but nothing on a regular schedule. she hates when i take it in the hospital because heaven forbid i sleep past 8 am and delay my respiratory treatments.

thanks everyone for the input! i really appreciate it. I think my biggest problem at the moment is simply being frustrated at the lack of progress with transplant. I have been listed for almost a year, it took me over a year to get listed, and now i'm still waiting and watching my lung function decline. i'm hoping for my call but it's hard to be optimistic at this point!

again, thanks for the responses <img src="i/expressions/face-icon-small-smile.gif" border="0"> and to miss haley for posting this for me lol

juliepie · Dec 22, 2009

this post is about me actually... tsk tsk, haley! haha

anyway, the situation is that i've been listed for 10 months so far, with one false call in september. my pfts average between 18 and 20, and i can get up to about 24 in the hospital. i'm just very frustrated because my main CF doctor won't advise me to take anything other than tylenol (which we know does nothing for CF-level issues). She will not let me take NSAIDS for risk of hemoptosizing (which i've never done, so i pop 800 mg advil twice a day).

she understands where i'm coming from, that i pretty much cannot function at more than a vegetative level if i don't take anything. i completely understand the risks of respiratory depression and am religious about wearing my oxygen and monitoring my sats, but all i really want to do is to be able to get up and moving! her solution was to "do what the rheumatoid arthritis people do" and start off slowly in the morning and then work up to doing stuff like errands in the afternoon- but by that time i'm wiped out from just being awake and breathing.

she's allowing me to take ativan as needed, but nothing on a regular schedule. she hates when i take it in the hospital because heaven forbid i sleep past 8 am and delay my respiratory treatments.

thanks everyone for the input! i really appreciate it. I think my biggest problem at the moment is simply being frustrated at the lack of progress with transplant. I have been listed for almost a year, it took me over a year to get listed, and now i'm still waiting and watching my lung function decline. i'm hoping for my call but it's hard to be optimistic at this point!

again, thanks for the responses <img src="i/expressions/face-icon-small-smile.gif" border="0"> and to miss haley for posting this for me lol

juliepie · Dec 22, 2009

this post is about me actually... tsk tsk, haley! haha

anyway, the situation is that i've been listed for 10 months so far, with one false call in september. my pfts average between 18 and 20, and i can get up to about 24 in the hospital. i'm just very frustrated because my main CF doctor won't advise me to take anything other than tylenol (which we know does nothing for CF-level issues). She will not let me take NSAIDS for risk of hemoptosizing (which i've never done, so i pop 800 mg advil twice a day).

she understands where i'm coming from, that i pretty much cannot function at more than a vegetative level if i don't take anything. i completely understand the risks of respiratory depression and am religious about wearing my oxygen and monitoring my sats, but all i really want to do is to be able to get up and moving! her solution was to "do what the rheumatoid arthritis people do" and start off slowly in the morning and then work up to doing stuff like errands in the afternoon- but by that time i'm wiped out from just being awake and breathing.

she's allowing me to take ativan as needed, but nothing on a regular schedule. she hates when i take it in the hospital because heaven forbid i sleep past 8 am and delay my respiratory treatments.

thanks everyone for the input! i really appreciate it. I think my biggest problem at the moment is simply being frustrated at the lack of progress with transplant. I have been listed for almost a year, it took me over a year to get listed, and now i'm still waiting and watching my lung function decline. i'm hoping for my call but it's hard to be optimistic at this point!

again, thanks for the responses <img src="i/expressions/face-icon-small-smile.gif" border="0"> and to miss haley for posting this for me lol

juliepie · Dec 22, 2009

this post is about me actually... tsk tsk, haley! haha
 
 anyway, the situation is that i've been listed for 10 months so far, with one false call in september. my pfts average between 18 and 20, and i can get up to about 24 in the hospital. i'm just very frustrated because my main CF doctor won't advise me to take anything other than tylenol (which we know does nothing for CF-level issues). She will not let me take NSAIDS for risk of hemoptosizing (which i've never done, so i pop 800 mg advil twice a day).
 
 she understands where i'm coming from, that i pretty much cannot function at more than a vegetative level if i don't take anything. i completely understand the risks of respiratory depression and am religious about wearing my oxygen and monitoring my sats, but all i really want to do is to be able to get up and moving! her solution was to "do what the rheumatoid arthritis people do" and start off slowly in the morning and then work up to doing stuff like errands in the afternoon- but by that time i'm wiped out from just being awake and breathing.
 
 she's allowing me to take ativan as needed, but nothing on a regular schedule. she hates when i take it in the hospital because heaven forbid i sleep past 8 am and delay my respiratory treatments.
 
 thanks everyone for the input! i really appreciate it. I think my biggest problem at the moment is simply being frustrated at the lack of progress with transplant. I have been listed for almost a year, it took me over a year to get listed, and now i'm still waiting and watching my lung function decline. i'm hoping for my call but it's hard to be optimistic at this point!
 
 again, thanks for the responses <img src="i/expressions/face-icon-small-smile.gif" border="0"> and to miss haley for posting this for me lol

Narcotics Pre-Transplant

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