When antibiotics aren't working... what do you do?

M

mah

Guest
Hi. I've had a lung infection for 8 weeks and have taken several antibiotics (IV) to no avail. Today I was sent home from the hospital on the basis that there is no reason for me to have treatment in a hospital. We have hi-flow oxygen at home. Has anyone ever been in this situation? Is it a matter of sticking it out until antibiotics do start kicking in? My strategy for now is to do alot of aerosols, rest, chest vest and see what happens, but I am seriously concerned about the antibiotics not working. Please let me know if you have ever been through anything like this and has anything helped.
~Thanks~
 
M

mah

Guest
Hi. I've had a lung infection for 8 weeks and have taken several antibiotics (IV) to no avail. Today I was sent home from the hospital on the basis that there is no reason for me to have treatment in a hospital. We have hi-flow oxygen at home. Has anyone ever been in this situation? Is it a matter of sticking it out until antibiotics do start kicking in? My strategy for now is to do alot of aerosols, rest, chest vest and see what happens, but I am seriously concerned about the antibiotics not working. Please let me know if you have ever been through anything like this and has anything helped.
~Thanks~
 
M

mah

Guest
Hi. I've had a lung infection for 8 weeks and have taken several antibiotics (IV) to no avail. Today I was sent home from the hospital on the basis that there is no reason for me to have treatment in a hospital. We have hi-flow oxygen at home. Has anyone ever been in this situation? Is it a matter of sticking it out until antibiotics do start kicking in? My strategy for now is to do alot of aerosols, rest, chest vest and see what happens, but I am seriously concerned about the antibiotics not working. Please let me know if you have ever been through anything like this and has anything helped.
<br />~Thanks~
 
M

mb101

New member
I won't be able to help you out much at all, but I just wanted to let you know that you're not alone in what you're going through. I've had infection now since February and have been on IV antibiotics the entire time since then. I've been through a lot of med switching and experimenting and nothing seems to be helping me. Tomorrow I get to try a different IV medicine cocktail, fun times. I had also been sent home after my first month and a half stay in the hospital and for the same reason. One week later I was back in for another month and a few days but IV meds always continue at home. My last day of IV meds was just this past Thursday and like I said, I get to go back on tomorrow. I've never been this sick in my life.

It is tough to know we're trying so hard and nothing is making us better. You feel powerless. We should always try to keep a good attitude though and not let it get the best of us or make us depressed, as hard as it may be, because that won't help any either. I really hope you start feeling better sooner than later and keep strong.
 
M

mb101

New member
I won't be able to help you out much at all, but I just wanted to let you know that you're not alone in what you're going through. I've had infection now since February and have been on IV antibiotics the entire time since then. I've been through a lot of med switching and experimenting and nothing seems to be helping me. Tomorrow I get to try a different IV medicine cocktail, fun times. I had also been sent home after my first month and a half stay in the hospital and for the same reason. One week later I was back in for another month and a few days but IV meds always continue at home. My last day of IV meds was just this past Thursday and like I said, I get to go back on tomorrow. I've never been this sick in my life.

It is tough to know we're trying so hard and nothing is making us better. You feel powerless. We should always try to keep a good attitude though and not let it get the best of us or make us depressed, as hard as it may be, because that won't help any either. I really hope you start feeling better sooner than later and keep strong.
 
M

mb101

New member
I won't be able to help you out much at all, but I just wanted to let you know that you're not alone in what you're going through. I've had infection now since February and have been on IV antibiotics the entire time since then. I've been through a lot of med switching and experimenting and nothing seems to be helping me. Tomorrow I get to try a different IV medicine cocktail, fun times. I had also been sent home after my first month and a half stay in the hospital and for the same reason. One week later I was back in for another month and a few days but IV meds always continue at home. My last day of IV meds was just this past Thursday and like I said, I get to go back on tomorrow. I've never been this sick in my life.
<br />
<br />It is tough to know we're trying so hard and nothing is making us better. You feel powerless. We should always try to keep a good attitude though and not let it get the best of us or make us depressed, as hard as it may be, because that won't help any either. I really hope you start feeling better sooner than later and keep strong.
 
G

Giggles

New member
I am so sorry you are going through this! I too have had problems with drugs just not doin the trick like the use too. In the past I have done the alotted time, stopped the IV got it pulled and then slowly got back to workin out etc and I seemed to bounce back a few weeks later. Sometimes for me I feel like I just can not take anymore drugs, IV, no sleep, side effects. And once I get it all out and out of my system and start workin out again I have been able to then finally bounce back. But this is just me and every situation is different and everyone culutres different bugs etc. I guess I would just talk to your doc and see what kinda of plan they have. If you have a picc line, maybe leave it in, see how you feel as you try to bounce back and if you need Iv DRUGS again then at least the picc line is in place. Good luck! It is so frusterating to not feel good and have drugs not do the trick. I just wanna scream!!! Hang in there!!!!

Jennifer 38 with CF and CFRD
 
G

Giggles

New member
I am so sorry you are going through this! I too have had problems with drugs just not doin the trick like the use too. In the past I have done the alotted time, stopped the IV got it pulled and then slowly got back to workin out etc and I seemed to bounce back a few weeks later. Sometimes for me I feel like I just can not take anymore drugs, IV, no sleep, side effects. And once I get it all out and out of my system and start workin out again I have been able to then finally bounce back. But this is just me and every situation is different and everyone culutres different bugs etc. I guess I would just talk to your doc and see what kinda of plan they have. If you have a picc line, maybe leave it in, see how you feel as you try to bounce back and if you need Iv DRUGS again then at least the picc line is in place. Good luck! It is so frusterating to not feel good and have drugs not do the trick. I just wanna scream!!! Hang in there!!!!

Jennifer 38 with CF and CFRD
 
G

Giggles

New member
I am so sorry you are going through this! I too have had problems with drugs just not doin the trick like the use too. In the past I have done the alotted time, stopped the IV got it pulled and then slowly got back to workin out etc and I seemed to bounce back a few weeks later. Sometimes for me I feel like I just can not take anymore drugs, IV, no sleep, side effects. And once I get it all out and out of my system and start workin out again I have been able to then finally bounce back. But this is just me and every situation is different and everyone culutres different bugs etc. I guess I would just talk to your doc and see what kinda of plan they have. If you have a picc line, maybe leave it in, see how you feel as you try to bounce back and if you need Iv DRUGS again then at least the picc line is in place. Good luck! It is so frusterating to not feel good and have drugs not do the trick. I just wanna scream!!! Hang in there!!!!
<br />
<br />Jennifer 38 with CF and CFRD
 
C

cf4life

New member
I had a bad stretch a several years ago now. I was on IV's for about 5 weeks, along with IV steroids. It finally just came a time to stop, and I was still feeling really run down and any muscle I had was just wasted away. I think there comes a time where the IV's were probably more harm on my body then good. They probably did there job, but I was just so run down that I needed to recover and build myself back up. You may be in a similar spot.

I think the best thing that helped me get going was starting pulmonary rehab and slowly increasing my exercise to start building myself back up. It started slow and every week I was doing more and more on the treadmill/bike/rowing machine and eventually elliptical.
If you have never done pulmonary rehab I would recommend giving it a try and a chance. They will help you exercise with your oxygen. After a couple months I think you could see a huge difference.

How is your weight and nutrition? That can make a big difference in helping you recover. When I had my bad spell, my weight also suffered. Once I started the pulmonary rehab and exercising I started eating more and put the weight back on.

You need to reverse the downward spiral. I think you have a good list, I'd just add exercise and nutrition.
 
C

cf4life

New member
I had a bad stretch a several years ago now. I was on IV's for about 5 weeks, along with IV steroids. It finally just came a time to stop, and I was still feeling really run down and any muscle I had was just wasted away. I think there comes a time where the IV's were probably more harm on my body then good. They probably did there job, but I was just so run down that I needed to recover and build myself back up. You may be in a similar spot.

I think the best thing that helped me get going was starting pulmonary rehab and slowly increasing my exercise to start building myself back up. It started slow and every week I was doing more and more on the treadmill/bike/rowing machine and eventually elliptical.
If you have never done pulmonary rehab I would recommend giving it a try and a chance. They will help you exercise with your oxygen. After a couple months I think you could see a huge difference.

How is your weight and nutrition? That can make a big difference in helping you recover. When I had my bad spell, my weight also suffered. Once I started the pulmonary rehab and exercising I started eating more and put the weight back on.

You need to reverse the downward spiral. I think you have a good list, I'd just add exercise and nutrition.
 
C

cf4life

New member
I had a bad stretch a several years ago now. I was on IV's for about 5 weeks, along with IV steroids. It finally just came a time to stop, and I was still feeling really run down and any muscle I had was just wasted away. I think there comes a time where the IV's were probably more harm on my body then good. They probably did there job, but I was just so run down that I needed to recover and build myself back up. You may be in a similar spot.
<br />
<br />I think the best thing that helped me get going was starting pulmonary rehab and slowly increasing my exercise to start building myself back up. It started slow and every week I was doing more and more on the treadmill/bike/rowing machine and eventually elliptical.
<br />If you have never done pulmonary rehab I would recommend giving it a try and a chance. They will help you exercise with your oxygen. After a couple months I think you could see a huge difference.
<br />
<br />How is your weight and nutrition? That can make a big difference in helping you recover. When I had my bad spell, my weight also suffered. Once I started the pulmonary rehab and exercising I started eating more and put the weight back on.
<br />
<br />You need to reverse the downward spiral. I think you have a good list, I'd just add exercise and nutrition.
 
B

Bridge76

Guest
I was in a similar spot last year. After 4 weeks of IVs and a month in hospital in November, the docs decided to send me home on increased antibiotic nebs, but no IVs. I resisted at first (despite being so desperte to leave the hosp), as I was still feeling quite rubbish. However, getting off the IVs and out of hospital increased my movement, calorie intake and stress levels. I've been off IVs ever since. I wouldn't say that I'm a picture of health right now, but lung function has remained constant (at my usual level for 10 years), and I don't get temperatures. I do get really tired though. I think you've sometimes just got to give your body a brek from all the antibiotics, and try as much phyio and whatever exercise you can (even if it's just a walk every day).

Good luck x
 
B

Bridge76

Guest
I was in a similar spot last year. After 4 weeks of IVs and a month in hospital in November, the docs decided to send me home on increased antibiotic nebs, but no IVs. I resisted at first (despite being so desperte to leave the hosp), as I was still feeling quite rubbish. However, getting off the IVs and out of hospital increased my movement, calorie intake and stress levels. I've been off IVs ever since. I wouldn't say that I'm a picture of health right now, but lung function has remained constant (at my usual level for 10 years), and I don't get temperatures. I do get really tired though. I think you've sometimes just got to give your body a brek from all the antibiotics, and try as much phyio and whatever exercise you can (even if it's just a walk every day).

Good luck x
 
B

Bridge76

Guest
I was in a similar spot last year. After 4 weeks of IVs and a month in hospital in November, the docs decided to send me home on increased antibiotic nebs, but no IVs. I resisted at first (despite being so desperte to leave the hosp), as I was still feeling quite rubbish. However, getting off the IVs and out of hospital increased my movement, calorie intake and stress levels. I've been off IVs ever since. I wouldn't say that I'm a picture of health right now, but lung function has remained constant (at my usual level for 10 years), and I don't get temperatures. I do get really tired though. I think you've sometimes just got to give your body a brek from all the antibiotics, and try as much phyio and whatever exercise you can (even if it's just a walk every day).
<br />
<br />Good luck x
 
T

tcystic

New member
I can relate to what your going thru but im not there just yet and to say the least u should sue that hospital they cant just release u because they dont know what else to do and get another doctor cause its just plain to see that he doesnt have your best interest at heart. My doctor would never let me leave i would literally have to walk out if that happened.
Good luck!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
T

tcystic

New member
I can relate to what your going thru but im not there just yet and to say the least u should sue that hospital they cant just release u because they dont know what else to do and get another doctor cause its just plain to see that he doesnt have your best interest at heart. My doctor would never let me leave i would literally have to walk out if that happened.
Good luck!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
T

tcystic

New member
I can relate to what your going thru but im not there just yet and to say the least u should sue that hospital they cant just release u because they dont know what else to do and get another doctor cause its just plain to see that he doesnt have your best interest at heart. My doctor would never let me leave i would literally have to walk out if that happened.
<br />Good luck!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
M

mom2lillian

New member
have your doctor look into fungal infection or reaction and try anti-fungals. They are either not treating you with teh right drugs or its not based in infection. Look at inflammation triggers as well such as allergies.
 
M

mom2lillian

New member
have your doctor look into fungal infection or reaction and try anti-fungals. They are either not treating you with teh right drugs or its not based in infection. Look at inflammation triggers as well such as allergies.
 
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