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long term IV therapy for mycobacteria

E

ej0820

New member
hey all...

So I'm in the hospital getting started on a long term IV course for m. absessus. I've been having fevers, shortness of breath and a general, nagging ickiness for quite some time. I've cultured m. absessus several times in the past and it's almost always the reason for an admission. Because of this, and the fact that I've been in the hospital more frequently than ever before, my doc has decided that it's time to go at this bug full force. We're talking IV abx for about a year. The doc that is in cahoots with my CF doc (which is an infectious disease dr) has me on tigecycline and cefoxitin. The cefoxitin, however, is every four hours. ???

She's suggesting I get an IV pump. It sounds like an insulin pump for IV meds. You remain hooked up to it and it constantly delivers IV meds every four hours so there's no hooking and unhooking, flushing and heparinizing, back and forth, etc. I, of course, would have to unhook and change IV meds when it's time, but I would then just rehook it and let it do it's own thing. It's worn on the waist just like a fanny pack. It sounds like an ingenious little thing, but...how in the hell do you sleep comfortably with a fanny pack around your waist? I can't imagine this thing is something I'm even going to be able to afford and quite frankly, it sounds kind of miserable.

This whole treatment course sounds miserable. IVs every four hours??? When I go home with these meds, the tigecycline will probably be on an every-other-day schedule, just for side effects. Still...every four hours and every other day? It seems like feeling like crap with off and on fevers and shortness of breath would be better than what I'm about to endure just to treat m. absessus. I just got a port (my very first one) placed and it's been an absolute nightmare. I was so excited for the possibilities of having a port and this whole experience has left me angry and disappointed. That's a different post for a different day, though...

Have you guys gone through this? Those of you who have done mycobacteria treatment, is this really how it is? Has anyone had one of these pump things? How did you manage the long term IV course? This sounds so involved and complicated, even for someone who doesn't have port issues. I feel like I may need to quit my job and take off of school to devote myself to this-that alone makes it seem not worth the effort. Have any of you started this long term treatment plan and stopped it half way through (out of frustration or because you got better)?

Any input or experiences would be great.
 
E

ej0820

New member
hey all...

So I'm in the hospital getting started on a long term IV course for m. absessus. I've been having fevers, shortness of breath and a general, nagging ickiness for quite some time. I've cultured m. absessus several times in the past and it's almost always the reason for an admission. Because of this, and the fact that I've been in the hospital more frequently than ever before, my doc has decided that it's time to go at this bug full force. We're talking IV abx for about a year. The doc that is in cahoots with my CF doc (which is an infectious disease dr) has me on tigecycline and cefoxitin. The cefoxitin, however, is every four hours. ???

She's suggesting I get an IV pump. It sounds like an insulin pump for IV meds. You remain hooked up to it and it constantly delivers IV meds every four hours so there's no hooking and unhooking, flushing and heparinizing, back and forth, etc. I, of course, would have to unhook and change IV meds when it's time, but I would then just rehook it and let it do it's own thing. It's worn on the waist just like a fanny pack. It sounds like an ingenious little thing, but...how in the hell do you sleep comfortably with a fanny pack around your waist? I can't imagine this thing is something I'm even going to be able to afford and quite frankly, it sounds kind of miserable.

This whole treatment course sounds miserable. IVs every four hours??? When I go home with these meds, the tigecycline will probably be on an every-other-day schedule, just for side effects. Still...every four hours and every other day? It seems like feeling like crap with off and on fevers and shortness of breath would be better than what I'm about to endure just to treat m. absessus. I just got a port (my very first one) placed and it's been an absolute nightmare. I was so excited for the possibilities of having a port and this whole experience has left me angry and disappointed. That's a different post for a different day, though...

Have you guys gone through this? Those of you who have done mycobacteria treatment, is this really how it is? Has anyone had one of these pump things? How did you manage the long term IV course? This sounds so involved and complicated, even for someone who doesn't have port issues. I feel like I may need to quit my job and take off of school to devote myself to this-that alone makes it seem not worth the effort. Have any of you started this long term treatment plan and stopped it half way through (out of frustration or because you got better)?

Any input or experiences would be great.
 
E

ej0820

New member
hey all...
<br />
<br />So I'm in the hospital getting started on a long term IV course for m. absessus. I've been having fevers, shortness of breath and a general, nagging ickiness for quite some time. I've cultured m. absessus several times in the past and it's almost always the reason for an admission. Because of this, and the fact that I've been in the hospital more frequently than ever before, my doc has decided that it's time to go at this bug full force. We're talking IV abx for about a year. The doc that is in cahoots with my CF doc (which is an infectious disease dr) has me on tigecycline and cefoxitin. The cefoxitin, however, is every four hours. ???
<br />
<br />She's suggesting I get an IV pump. It sounds like an insulin pump for IV meds. You remain hooked up to it and it constantly delivers IV meds every four hours so there's no hooking and unhooking, flushing and heparinizing, back and forth, etc. I, of course, would have to unhook and change IV meds when it's time, but I would then just rehook it and let it do it's own thing. It's worn on the waist just like a fanny pack. It sounds like an ingenious little thing, but...how in the hell do you sleep comfortably with a fanny pack around your waist? I can't imagine this thing is something I'm even going to be able to afford and quite frankly, it sounds kind of miserable.
<br />
<br />This whole treatment course sounds miserable. IVs every four hours??? When I go home with these meds, the tigecycline will probably be on an every-other-day schedule, just for side effects. Still...every four hours and every other day? It seems like feeling like crap with off and on fevers and shortness of breath would be better than what I'm about to endure just to treat m. absessus. I just got a port (my very first one) placed and it's been an absolute nightmare. I was so excited for the possibilities of having a port and this whole experience has left me angry and disappointed. That's a different post for a different day, though...
<br />
<br />Have you guys gone through this? Those of you who have done mycobacteria treatment, is this really how it is? Has anyone had one of these pump things? How did you manage the long term IV course? This sounds so involved and complicated, even for someone who doesn't have port issues. I feel like I may need to quit my job and take off of school to devote myself to this-that alone makes it seem not worth the effort. Have any of you started this long term treatment plan and stopped it half way through (out of frustration or because you got better)?
<br />
<br />Any input or experiences would be great.
 
M

Mallymookcf

New member
around 10 years or so ago, i too was treated for the micobacterium absessus. my dr. wanted me on it for 6 months though. i was on cefoxitin, zyvox, and i think the other was moxifloxin. i was in pediatrics at the time, and prior to growing this bug i had been super healthy...so i guess they didnt want to put in a port in my case..??..(THEY PROB. SHOULD HAVE) i was on ivs for about 6 weeks or so , when i started having allergic reactions everytime i would hook up any one of the three iv meds. i broke out in a rash, itched to death!!!!, and had abdominal and spine pain. i had tolerated it just fine though for 6 weeks, it was as if God was saying no more meds, you are clear! Sure enough i had to stop the meds, and my docs did a bronchoscopy to get a acurate sputum culture...and there were no signs of any of the absessus left!!! still almost 10 years later i still have not grown it!God is good, and i will be praying for you that this treatment and Gods healing will irradicate this for you! lots of love!
 
M

Mallymookcf

New member
around 10 years or so ago, i too was treated for the micobacterium absessus. my dr. wanted me on it for 6 months though. i was on cefoxitin, zyvox, and i think the other was moxifloxin. i was in pediatrics at the time, and prior to growing this bug i had been super healthy...so i guess they didnt want to put in a port in my case..??..(THEY PROB. SHOULD HAVE) i was on ivs for about 6 weeks or so , when i started having allergic reactions everytime i would hook up any one of the three iv meds. i broke out in a rash, itched to death!!!!, and had abdominal and spine pain. i had tolerated it just fine though for 6 weeks, it was as if God was saying no more meds, you are clear! Sure enough i had to stop the meds, and my docs did a bronchoscopy to get a acurate sputum culture...and there were no signs of any of the absessus left!!! still almost 10 years later i still have not grown it!God is good, and i will be praying for you that this treatment and Gods healing will irradicate this for you! lots of love!
 
M

Mallymookcf

New member
around 10 years or so ago, i too was treated for the micobacterium absessus. my dr. wanted me on it for 6 months though. i was on cefoxitin, zyvox, and i think the other was moxifloxin. i was in pediatrics at the time, and prior to growing this bug i had been super healthy...so i guess they didnt want to put in a port in my case..??..(THEY PROB. SHOULD HAVE) i was on ivs for about 6 weeks or so , when i started having allergic reactions everytime i would hook up any one of the three iv meds. i broke out in a rash, itched to death!!!!, and had abdominal and spine pain. i had tolerated it just fine though for 6 weeks, it was as if God was saying no more meds, you are clear! Sure enough i had to stop the meds, and my docs did a bronchoscopy to get a acurate sputum culture...and there were no signs of any of the absessus left!!! still almost 10 years later i still have not grown it!God is good, and i will be praying for you that this treatment and Gods healing will irradicate this for you! lots of love!
 
T

TonyaH

Guest
Hi Erin,
My son is currently being treated for m. abscessus. We started cefoxitin every four hours and tigecycline every 12 hours. That lasted three weeks when Andrew developed high fevers and then broke out in a terrible rash, similar to what Mallymoo was explaining. Last Friday they stopped all treatment until he gets well. Then we will decide what to do next.

But yes, cefoxitin was every four hours. Our home health gave it to us in an iv push, which is actually very nice because you just inject so many mls of the med into the line over about 5 minutes. So, even his middle of the night dose only had me out of bed for about 10 to 15 minutes. You might want to see if that's available.

We have not used a pump yet. We have used eclipse balls (our fave), iv push, and bagged gravity drip. The pump sounds very convenient, but I think you are right. It would take alot of getting used to.

I hope your treatment runs well and you see improvement in the way you feel. I would love to hear updates on how you are doing!
 
T

TonyaH

Guest
Hi Erin,
My son is currently being treated for m. abscessus. We started cefoxitin every four hours and tigecycline every 12 hours. That lasted three weeks when Andrew developed high fevers and then broke out in a terrible rash, similar to what Mallymoo was explaining. Last Friday they stopped all treatment until he gets well. Then we will decide what to do next.

But yes, cefoxitin was every four hours. Our home health gave it to us in an iv push, which is actually very nice because you just inject so many mls of the med into the line over about 5 minutes. So, even his middle of the night dose only had me out of bed for about 10 to 15 minutes. You might want to see if that's available.

We have not used a pump yet. We have used eclipse balls (our fave), iv push, and bagged gravity drip. The pump sounds very convenient, but I think you are right. It would take alot of getting used to.

I hope your treatment runs well and you see improvement in the way you feel. I would love to hear updates on how you are doing!
 
T

TonyaH

Guest
Hi Erin,
<br />My son is currently being treated for m. abscessus. We started cefoxitin every four hours and tigecycline every 12 hours. That lasted three weeks when Andrew developed high fevers and then broke out in a terrible rash, similar to what Mallymoo was explaining. Last Friday they stopped all treatment until he gets well. Then we will decide what to do next.
<br />
<br />But yes, cefoxitin was every four hours. Our home health gave it to us in an iv push, which is actually very nice because you just inject so many mls of the med into the line over about 5 minutes. So, even his middle of the night dose only had me out of bed for about 10 to 15 minutes. You might want to see if that's available.
<br />
<br />We have not used a pump yet. We have used eclipse balls (our fave), iv push, and bagged gravity drip. The pump sounds very convenient, but I think you are right. It would take alot of getting used to.
<br />
<br />I hope your treatment runs well and you see improvement in the way you feel. I would love to hear updates on how you are doing!
 
E

ej0820

New member
thanks for the responses!

Tonya, I'm so glad to hear that I'm not the only one on these drugs. It sounds like your son and I are very similar in our treatment plan. I do hope he gets better and you guys are able to find the right drugs for him. I know zyvoxx is supposedly a really good drug for m. absessus, have they considered trying that for andrew? I've been on it in the past for other bugs and I can't tolerate it, so that one is out of the question for me. It made me sooo nauseous. I've never met anyone else who had as much trouble as I did with it, so maybe that's an option for him when he gets better. Does he have a port? How was life with a port being accessed so often? Stupid question, but with infusing every four hours and having it accessed for so much time, was your son able to take a regular shower at all or is it constant hair washing in the sink with minimal exposure to direct water? <img src="i/expressions/face-icon-small-confused.gif" border="0"> I just got a port and am still learning all the details.

Funny you mention the iv push...the infectious disease doc just came in and suggested it after I told her I probably couldn't even afford the pump she was talking about. She wasn't sure if cefoxitin was even able to come that way. An iv push doesn't sound all that bad!

Ugh, I'm getting concerned though since both you and mallymookcf said rashes/fevers didn't appear until several weeks after being on the drugs. My CF doc wanted me to stay in the hospital after starting these to make sure I tolerate them ok, and it sounds like even though I may do ok with them in the hospital, we won't really know how I handle them until I'm home and well on my way to getting back to normal. Oh well...I guess there isn't much to do about that and only time will tell.

thanks again for the replies!
 
E

ej0820

New member
thanks for the responses!

Tonya, I'm so glad to hear that I'm not the only one on these drugs. It sounds like your son and I are very similar in our treatment plan. I do hope he gets better and you guys are able to find the right drugs for him. I know zyvoxx is supposedly a really good drug for m. absessus, have they considered trying that for andrew? I've been on it in the past for other bugs and I can't tolerate it, so that one is out of the question for me. It made me sooo nauseous. I've never met anyone else who had as much trouble as I did with it, so maybe that's an option for him when he gets better. Does he have a port? How was life with a port being accessed so often? Stupid question, but with infusing every four hours and having it accessed for so much time, was your son able to take a regular shower at all or is it constant hair washing in the sink with minimal exposure to direct water? <img src="i/expressions/face-icon-small-confused.gif" border="0"> I just got a port and am still learning all the details.

Funny you mention the iv push...the infectious disease doc just came in and suggested it after I told her I probably couldn't even afford the pump she was talking about. She wasn't sure if cefoxitin was even able to come that way. An iv push doesn't sound all that bad!

Ugh, I'm getting concerned though since both you and mallymookcf said rashes/fevers didn't appear until several weeks after being on the drugs. My CF doc wanted me to stay in the hospital after starting these to make sure I tolerate them ok, and it sounds like even though I may do ok with them in the hospital, we won't really know how I handle them until I'm home and well on my way to getting back to normal. Oh well...I guess there isn't much to do about that and only time will tell.

thanks again for the replies!
 
E

ej0820

New member
thanks for the responses!
<br />
<br />Tonya, I'm so glad to hear that I'm not the only one on these drugs. It sounds like your son and I are very similar in our treatment plan. I do hope he gets better and you guys are able to find the right drugs for him. I know zyvoxx is supposedly a really good drug for m. absessus, have they considered trying that for andrew? I've been on it in the past for other bugs and I can't tolerate it, so that one is out of the question for me. It made me sooo nauseous. I've never met anyone else who had as much trouble as I did with it, so maybe that's an option for him when he gets better. Does he have a port? How was life with a port being accessed so often? Stupid question, but with infusing every four hours and having it accessed for so much time, was your son able to take a regular shower at all or is it constant hair washing in the sink with minimal exposure to direct water? <img src="i/expressions/face-icon-small-confused.gif" border="0"> I just got a port and am still learning all the details.
<br />
<br />Funny you mention the iv push...the infectious disease doc just came in and suggested it after I told her I probably couldn't even afford the pump she was talking about. She wasn't sure if cefoxitin was even able to come that way. An iv push doesn't sound all that bad!
<br />
<br />Ugh, I'm getting concerned though since both you and mallymookcf said rashes/fevers didn't appear until several weeks after being on the drugs. My CF doc wanted me to stay in the hospital after starting these to make sure I tolerate them ok, and it sounds like even though I may do ok with them in the hospital, we won't really know how I handle them until I'm home and well on my way to getting back to normal. Oh well...I guess there isn't much to do about that and only time will tell.
<br />
<br />thanks again for the replies!
 
M

mag6125

New member
Erin,

I don't have experience with the bacteria/treatment you are going through but I saw your question about being able to shower with the port accessed. The last time I was in the hospital they gave me these things called Aquaguards, they're basically a plastic rectangle with adhesive around the edges that you put over your port when its accessed so you can shower normally. You could ask your CF nurse or home care company about getting some of these, I love them its so nice to be able to take a normal shower when on ivs!
 
M

mag6125

New member
Erin,

I don't have experience with the bacteria/treatment you are going through but I saw your question about being able to shower with the port accessed. The last time I was in the hospital they gave me these things called Aquaguards, they're basically a plastic rectangle with adhesive around the edges that you put over your port when its accessed so you can shower normally. You could ask your CF nurse or home care company about getting some of these, I love them its so nice to be able to take a normal shower when on ivs!
 
M

mag6125

New member
Erin,
<br />
<br />I don't have experience with the bacteria/treatment you are going through but I saw your question about being able to shower with the port accessed. The last time I was in the hospital they gave me these things called Aquaguards, they're basically a plastic rectangle with adhesive around the edges that you put over your port when its accessed so you can shower normally. You could ask your CF nurse or home care company about getting some of these, I love them its so nice to be able to take a normal shower when on ivs!
 
W

windex125

Guest
ej what went wrong with the port being placed? where did they place it? only if you want to share. but I know we all gave you postive feedback on that one. Sometimes it takes some time for you and yr. body to adjust, it feels weird in the beginning, but I think most of us are happy to have them. I am sorry to hear about yr. MAC I've been doing that battle for yrs. Yr. treatment however sounds very agressive and tiring, it may work out that after a few mts, you will be able to cut back. Also we all get different reactions/side effects let yr. body tell you/blood work as well. I always get quite depressed when I hear IV's but I don't think I've ever done longer than 3mts. You sound very upset to me. Please try to calm down and know that you are doing what comes natural to take care of yourself. Alot of times what the doctor puts out there is sometimes changed or you get better quicker. You can IM me if you would like. Pat 55/CF
 
W

windex125

Guest
ej what went wrong with the port being placed? where did they place it? only if you want to share. but I know we all gave you postive feedback on that one. Sometimes it takes some time for you and yr. body to adjust, it feels weird in the beginning, but I think most of us are happy to have them. I am sorry to hear about yr. MAC I've been doing that battle for yrs. Yr. treatment however sounds very agressive and tiring, it may work out that after a few mts, you will be able to cut back. Also we all get different reactions/side effects let yr. body tell you/blood work as well. I always get quite depressed when I hear IV's but I don't think I've ever done longer than 3mts. You sound very upset to me. Please try to calm down and know that you are doing what comes natural to take care of yourself. Alot of times what the doctor puts out there is sometimes changed or you get better quicker. You can IM me if you would like. Pat 55/CF
 
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