Frustrated, scared, alone....

coltsfan715

New member
I hate to say it but I do know how you are feeling. I got this way alot the few years before my transplant - meaning I just didn't understand WHY the things I was doing - that had worked in the past - were not working anymore.

As for calling the doc I think that is a good idea. You may have sensitivities to the meds in labs results but in actual usage they may not be as effective for you and maybe they can give you something else.

As for how long it takes to get over or start feeling better once starting IVs. For me it varied. I went for years and would feel better within 24 hours. Then as I entered adulthood it normally took a few days. In the 2 years before my transplant it would take weeks. The last hospital stay I had before my transplant I actually told my mom I guess the IVs just aren't working like they used too. I had spent 3 weeks on IVs and had regained about 3% of the 9% that I had declined when getting sick. I still felt crappy for the most part and was just coming out of the "funk" at the end of the 3 weeks of meds.

I am not trying to scare you by relating this issue to the time of my transplant - but for me I think it is important. After my transplant they did extensive cultures on my lungs and discovered 2 types of bacteria that I had never cultured in basic hospital cultures before. I personally think that I started culturing those bacteria around the time I started to decline and that is why I was having such a hard time recovering even while on IVs. They were treating what they knew I had but the two things that were there but unidentified were going untreated.

Also something to consider which I know happened to me off and on growing up - sometimes the abx would wear me out. I would start feeling better then after a few weeks I would be just drained from the effects of the meds on my body. I would normally still be reouping for about a week after being off of IVs. That may just have been me though.

I hope you start feeling better and that you get some answers from your doc tomorrow.

Take Care,
Lindsey
 

coltsfan715

New member
I hate to say it but I do know how you are feeling. I got this way alot the few years before my transplant - meaning I just didn't understand WHY the things I was doing - that had worked in the past - were not working anymore.

As for calling the doc I think that is a good idea. You may have sensitivities to the meds in labs results but in actual usage they may not be as effective for you and maybe they can give you something else.

As for how long it takes to get over or start feeling better once starting IVs. For me it varied. I went for years and would feel better within 24 hours. Then as I entered adulthood it normally took a few days. In the 2 years before my transplant it would take weeks. The last hospital stay I had before my transplant I actually told my mom I guess the IVs just aren't working like they used too. I had spent 3 weeks on IVs and had regained about 3% of the 9% that I had declined when getting sick. I still felt crappy for the most part and was just coming out of the "funk" at the end of the 3 weeks of meds.

I am not trying to scare you by relating this issue to the time of my transplant - but for me I think it is important. After my transplant they did extensive cultures on my lungs and discovered 2 types of bacteria that I had never cultured in basic hospital cultures before. I personally think that I started culturing those bacteria around the time I started to decline and that is why I was having such a hard time recovering even while on IVs. They were treating what they knew I had but the two things that were there but unidentified were going untreated.

Also something to consider which I know happened to me off and on growing up - sometimes the abx would wear me out. I would start feeling better then after a few weeks I would be just drained from the effects of the meds on my body. I would normally still be reouping for about a week after being off of IVs. That may just have been me though.

I hope you start feeling better and that you get some answers from your doc tomorrow.

Take Care,
Lindsey
 

coltsfan715

New member
I hate to say it but I do know how you are feeling. I got this way alot the few years before my transplant - meaning I just didn't understand WHY the things I was doing - that had worked in the past - were not working anymore.

As for calling the doc I think that is a good idea. You may have sensitivities to the meds in labs results but in actual usage they may not be as effective for you and maybe they can give you something else.

As for how long it takes to get over or start feeling better once starting IVs. For me it varied. I went for years and would feel better within 24 hours. Then as I entered adulthood it normally took a few days. In the 2 years before my transplant it would take weeks. The last hospital stay I had before my transplant I actually told my mom I guess the IVs just aren't working like they used too. I had spent 3 weeks on IVs and had regained about 3% of the 9% that I had declined when getting sick. I still felt crappy for the most part and was just coming out of the "funk" at the end of the 3 weeks of meds.

I am not trying to scare you by relating this issue to the time of my transplant - but for me I think it is important. After my transplant they did extensive cultures on my lungs and discovered 2 types of bacteria that I had never cultured in basic hospital cultures before. I personally think that I started culturing those bacteria around the time I started to decline and that is why I was having such a hard time recovering even while on IVs. They were treating what they knew I had but the two things that were there but unidentified were going untreated.

Also something to consider which I know happened to me off and on growing up - sometimes the abx would wear me out. I would start feeling better then after a few weeks I would be just drained from the effects of the meds on my body. I would normally still be reouping for about a week after being off of IVs. That may just have been me though.

I hope you start feeling better and that you get some answers from your doc tomorrow.

Take Care,
Lindsey
 

coltsfan715

New member
I hate to say it but I do know how you are feeling. I got this way alot the few years before my transplant - meaning I just didn't understand WHY the things I was doing - that had worked in the past - were not working anymore.

As for calling the doc I think that is a good idea. You may have sensitivities to the meds in labs results but in actual usage they may not be as effective for you and maybe they can give you something else.

As for how long it takes to get over or start feeling better once starting IVs. For me it varied. I went for years and would feel better within 24 hours. Then as I entered adulthood it normally took a few days. In the 2 years before my transplant it would take weeks. The last hospital stay I had before my transplant I actually told my mom I guess the IVs just aren't working like they used too. I had spent 3 weeks on IVs and had regained about 3% of the 9% that I had declined when getting sick. I still felt crappy for the most part and was just coming out of the "funk" at the end of the 3 weeks of meds.

I am not trying to scare you by relating this issue to the time of my transplant - but for me I think it is important. After my transplant they did extensive cultures on my lungs and discovered 2 types of bacteria that I had never cultured in basic hospital cultures before. I personally think that I started culturing those bacteria around the time I started to decline and that is why I was having such a hard time recovering even while on IVs. They were treating what they knew I had but the two things that were there but unidentified were going untreated.

Also something to consider which I know happened to me off and on growing up - sometimes the abx would wear me out. I would start feeling better then after a few weeks I would be just drained from the effects of the meds on my body. I would normally still be reouping for about a week after being off of IVs. That may just have been me though.

I hope you start feeling better and that you get some answers from your doc tomorrow.

Take Care,
Lindsey
 

coltsfan715

New member
I hate to say it but I do know how you are feeling. I got this way alot the few years before my transplant - meaning I just didn't understand WHY the things I was doing - that had worked in the past - were not working anymore.
<br />
<br />As for calling the doc I think that is a good idea. You may have sensitivities to the meds in labs results but in actual usage they may not be as effective for you and maybe they can give you something else.
<br />
<br />As for how long it takes to get over or start feeling better once starting IVs. For me it varied. I went for years and would feel better within 24 hours. Then as I entered adulthood it normally took a few days. In the 2 years before my transplant it would take weeks. The last hospital stay I had before my transplant I actually told my mom I guess the IVs just aren't working like they used too. I had spent 3 weeks on IVs and had regained about 3% of the 9% that I had declined when getting sick. I still felt crappy for the most part and was just coming out of the "funk" at the end of the 3 weeks of meds.
<br />
<br />I am not trying to scare you by relating this issue to the time of my transplant - but for me I think it is important. After my transplant they did extensive cultures on my lungs and discovered 2 types of bacteria that I had never cultured in basic hospital cultures before. I personally think that I started culturing those bacteria around the time I started to decline and that is why I was having such a hard time recovering even while on IVs. They were treating what they knew I had but the two things that were there but unidentified were going untreated.
<br />
<br />Also something to consider which I know happened to me off and on growing up - sometimes the abx would wear me out. I would start feeling better then after a few weeks I would be just drained from the effects of the meds on my body. I would normally still be reouping for about a week after being off of IVs. That may just have been me though.
<br />
<br />I hope you start feeling better and that you get some answers from your doc tomorrow.
<br />
<br />Take Care,
<br />Lindsey
 

cf4life

New member
Have your sputum checked again. Things change, pseudo is a nasty bugger.

Pseudo is overpowering. When we have an exacerbation, one pseudo stain my be growing out of control not allowing others to show up in your culture. When you start killing off that one stain, another one that is not a good match for your antibiotics, may start growing and taking over. This is how resistant strains start taking over and becoming the more predominant stains.

I aways ask to have cultures redone throughout my IV treatments now to make sure things don't change after this happened to me. I also request to switch up my antibiotics each exacerbation.
 

cf4life

New member
Have your sputum checked again. Things change, pseudo is a nasty bugger.

Pseudo is overpowering. When we have an exacerbation, one pseudo stain my be growing out of control not allowing others to show up in your culture. When you start killing off that one stain, another one that is not a good match for your antibiotics, may start growing and taking over. This is how resistant strains start taking over and becoming the more predominant stains.

I aways ask to have cultures redone throughout my IV treatments now to make sure things don't change after this happened to me. I also request to switch up my antibiotics each exacerbation.
 

cf4life

New member
Have your sputum checked again. Things change, pseudo is a nasty bugger.

Pseudo is overpowering. When we have an exacerbation, one pseudo stain my be growing out of control not allowing others to show up in your culture. When you start killing off that one stain, another one that is not a good match for your antibiotics, may start growing and taking over. This is how resistant strains start taking over and becoming the more predominant stains.

I aways ask to have cultures redone throughout my IV treatments now to make sure things don't change after this happened to me. I also request to switch up my antibiotics each exacerbation.
 

cf4life

New member
Have your sputum checked again. Things change, pseudo is a nasty bugger.

Pseudo is overpowering. When we have an exacerbation, one pseudo stain my be growing out of control not allowing others to show up in your culture. When you start killing off that one stain, another one that is not a good match for your antibiotics, may start growing and taking over. This is how resistant strains start taking over and becoming the more predominant stains.

I aways ask to have cultures redone throughout my IV treatments now to make sure things don't change after this happened to me. I also request to switch up my antibiotics each exacerbation.
 

cf4life

New member
Have your sputum checked again. Things change, pseudo is a nasty bugger.
<br />
<br />Pseudo is overpowering. When we have an exacerbation, one pseudo stain my be growing out of control not allowing others to show up in your culture. When you start killing off that one stain, another one that is not a good match for your antibiotics, may start growing and taking over. This is how resistant strains start taking over and becoming the more predominant stains.
<br />
<br />I aways ask to have cultures redone throughout my IV treatments now to make sure things don't change after this happened to me. I also request to switch up my antibiotics each exacerbation.
 

JennifersHope

New member
I am sorry .. I totally know the feeling, and I understand it so well... I just wish I could make it right for you...
<br />
<br />Jennifer
 

kayleesgrandma

New member
I'm sorry you are feeling so bad. I can't relate, since Kaylee is so young--but I just want you to know that I care, and I am saying a prayer for you. It's not much--but I am so glad that you came to us and know that we are here for you. I hate feeling so helpless to help you...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 

kayleesgrandma

New member
I'm sorry you are feeling so bad. I can't relate, since Kaylee is so young--but I just want you to know that I care, and I am saying a prayer for you. It's not much--but I am so glad that you came to us and know that we are here for you. I hate feeling so helpless to help you...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 

kayleesgrandma

New member
I'm sorry you are feeling so bad. I can't relate, since Kaylee is so young--but I just want you to know that I care, and I am saying a prayer for you. It's not much--but I am so glad that you came to us and know that we are here for you. I hate feeling so helpless to help you...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 

kayleesgrandma

New member
I'm sorry you are feeling so bad. I can't relate, since Kaylee is so young--but I just want you to know that I care, and I am saying a prayer for you. It's not much--but I am so glad that you came to us and know that we are here for you. I hate feeling so helpless to help you...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 

kayleesgrandma

New member
I'm sorry you are feeling so bad. I can't relate, since Kaylee is so young--but I just want you to know that I care, and I am saying a prayer for you. It's not much--but I am so glad that you came to us and know that we are here for you. I hate feeling so helpless to help you...<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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