Here we go again

Diane

New member
Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI.

3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day. Then next day same thing and so on. 3 days before i called her i started having some shortness of breath. She called back and said the Dr. wanted me to stop the AZLI and come in the next day so i did. I only did one PFT. because he didnt want to irritate my lungs anymore. They were horrible <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He asked if i wanted iv's and i said yes right away. Although i dont really <b>feel</b> sick, my numbers are terrible and i am short of breath, and the last time my numbers were this low i was sicker than sick and had to go in the hospital and be on oxygen. I told him since i dont actually feel sick i'd rather start the iv's now before it gets any worse. I <b>surely</b> want to avoid going in the hospital. He had me walk up and down the hallway with a pulse ox on to see what my numbers would do. I started out at 94% and when i was done.... 88%, he then said iv's were a good idea ( even though he agreed to do them already). I was also told to stop the AZLI for now.
What scares me most is my last iv's were only 2 and a half months ago. And before that 3 months before. It seems the need for them is coming closer and closer and i feel i am in a bad spiral and cant seem to get out of it for long. Any good vibes , advice , encouragement or prayers are so very much appreciated. I am really trying to get my health back to normal, and keep my sanity while doing it. LOL
 

Diane

New member
Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI.

3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day. Then next day same thing and so on. 3 days before i called her i started having some shortness of breath. She called back and said the Dr. wanted me to stop the AZLI and come in the next day so i did. I only did one PFT. because he didnt want to irritate my lungs anymore. They were horrible <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He asked if i wanted iv's and i said yes right away. Although i dont really <b>feel</b> sick, my numbers are terrible and i am short of breath, and the last time my numbers were this low i was sicker than sick and had to go in the hospital and be on oxygen. I told him since i dont actually feel sick i'd rather start the iv's now before it gets any worse. I <b>surely</b> want to avoid going in the hospital. He had me walk up and down the hallway with a pulse ox on to see what my numbers would do. I started out at 94% and when i was done.... 88%, he then said iv's were a good idea ( even though he agreed to do them already). I was also told to stop the AZLI for now.
What scares me most is my last iv's were only 2 and a half months ago. And before that 3 months before. It seems the need for them is coming closer and closer and i feel i am in a bad spiral and cant seem to get out of it for long. Any good vibes , advice , encouragement or prayers are so very much appreciated. I am really trying to get my health back to normal, and keep my sanity while doing it. LOL
 

Diane

New member
Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI.

3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day. Then next day same thing and so on. 3 days before i called her i started having some shortness of breath. She called back and said the Dr. wanted me to stop the AZLI and come in the next day so i did. I only did one PFT. because he didnt want to irritate my lungs anymore. They were horrible <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He asked if i wanted iv's and i said yes right away. Although i dont really <b>feel</b> sick, my numbers are terrible and i am short of breath, and the last time my numbers were this low i was sicker than sick and had to go in the hospital and be on oxygen. I told him since i dont actually feel sick i'd rather start the iv's now before it gets any worse. I <b>surely</b> want to avoid going in the hospital. He had me walk up and down the hallway with a pulse ox on to see what my numbers would do. I started out at 94% and when i was done.... 88%, he then said iv's were a good idea ( even though he agreed to do them already). I was also told to stop the AZLI for now.
What scares me most is my last iv's were only 2 and a half months ago. And before that 3 months before. It seems the need for them is coming closer and closer and i feel i am in a bad spiral and cant seem to get out of it for long. Any good vibes , advice , encouragement or prayers are so very much appreciated. I am really trying to get my health back to normal, and keep my sanity while doing it. LOL
 

Diane

New member
Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI.

3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day. Then next day same thing and so on. 3 days before i called her i started having some shortness of breath. She called back and said the Dr. wanted me to stop the AZLI and come in the next day so i did. I only did one PFT. because he didnt want to irritate my lungs anymore. They were horrible <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He asked if i wanted iv's and i said yes right away. Although i dont really <b>feel</b> sick, my numbers are terrible and i am short of breath, and the last time my numbers were this low i was sicker than sick and had to go in the hospital and be on oxygen. I told him since i dont actually feel sick i'd rather start the iv's now before it gets any worse. I <b>surely</b> want to avoid going in the hospital. He had me walk up and down the hallway with a pulse ox on to see what my numbers would do. I started out at 94% and when i was done.... 88%, he then said iv's were a good idea ( even though he agreed to do them already). I was also told to stop the AZLI for now.
What scares me most is my last iv's were only 2 and a half months ago. And before that 3 months before. It seems the need for them is coming closer and closer and i feel i am in a bad spiral and cant seem to get out of it for long. Any good vibes , advice , encouragement or prayers are so very much appreciated. I am really trying to get my health back to normal, and keep my sanity while doing it. LOL
 

Diane

New member
Well i went to my Dr.'s yesterday ( was supposed to go today, be he didnt want to wait) I called my Nurse on Monday and told her what was going on with my having hemoptysis since i started using the AZLI.
<br />
<br />3 Days after i strated using it, i had hemoptysis and streaks for the rest of the day. Then next day same thing and so on. 3 days before i called her i started having some shortness of breath. She called back and said the Dr. wanted me to stop the AZLI and come in the next day so i did. I only did one PFT. because he didnt want to irritate my lungs anymore. They were horrible <img src="i/expressions/face-icon-small-sad.gif" border="0"> . He asked if i wanted iv's and i said yes right away. Although i dont really <b>feel</b> sick, my numbers are terrible and i am short of breath, and the last time my numbers were this low i was sicker than sick and had to go in the hospital and be on oxygen. I told him since i dont actually feel sick i'd rather start the iv's now before it gets any worse. I <b>surely</b> want to avoid going in the hospital. He had me walk up and down the hallway with a pulse ox on to see what my numbers would do. I started out at 94% and when i was done.... 88%, he then said iv's were a good idea ( even though he agreed to do them already). I was also told to stop the AZLI for now.
<br /> What scares me most is my last iv's were only 2 and a half months ago. And before that 3 months before. It seems the need for them is coming closer and closer and i feel i am in a bad spiral and cant seem to get out of it for long. Any good vibes , advice , encouragement or prayers are so very much appreciated. I am really trying to get my health back to normal, and keep my sanity while doing it. LOL
 

SarahJean1976

New member
Diane, I will for sure keep you in my prayers... Though I want you to know that it isn't THAT uncommon I think, though it surprises me they didn't have you do a test runat the hospital before they prescribed it... My doctors were going to prescribe me something (can't remember wht it was)and they had me do it at the hopital and then do a PFT which it dropped me almost 15 points!!! I started crying and then they explained to me that some of our medications are Constrictirs and then they had me do albuterol and they returned to normal... I hate coughingup any blood!!! It ia one of my biggest fears, though I know it kind of comes with the territory... it used to be I would get really panicked and then it would take way to long to stop, so now I do a form of meditation when it happens... I know it sounds silly , but it wourks for me...
God Bless you Diane and know you are in my thoughts!!
xoxo
Sarah
 

SarahJean1976

New member
Diane, I will for sure keep you in my prayers... Though I want you to know that it isn't THAT uncommon I think, though it surprises me they didn't have you do a test runat the hospital before they prescribed it... My doctors were going to prescribe me something (can't remember wht it was)and they had me do it at the hopital and then do a PFT which it dropped me almost 15 points!!! I started crying and then they explained to me that some of our medications are Constrictirs and then they had me do albuterol and they returned to normal... I hate coughingup any blood!!! It ia one of my biggest fears, though I know it kind of comes with the territory... it used to be I would get really panicked and then it would take way to long to stop, so now I do a form of meditation when it happens... I know it sounds silly , but it wourks for me...
God Bless you Diane and know you are in my thoughts!!
xoxo
Sarah
 

SarahJean1976

New member
Diane, I will for sure keep you in my prayers... Though I want you to know that it isn't THAT uncommon I think, though it surprises me they didn't have you do a test runat the hospital before they prescribed it... My doctors were going to prescribe me something (can't remember wht it was)and they had me do it at the hopital and then do a PFT which it dropped me almost 15 points!!! I started crying and then they explained to me that some of our medications are Constrictirs and then they had me do albuterol and they returned to normal... I hate coughingup any blood!!! It ia one of my biggest fears, though I know it kind of comes with the territory... it used to be I would get really panicked and then it would take way to long to stop, so now I do a form of meditation when it happens... I know it sounds silly , but it wourks for me...
God Bless you Diane and know you are in my thoughts!!
xoxo
Sarah
 

SarahJean1976

New member
Diane, I will for sure keep you in my prayers... Though I want you to know that it isn't THAT uncommon I think, though it surprises me they didn't have you do a test runat the hospital before they prescribed it... My doctors were going to prescribe me something (can't remember wht it was)and they had me do it at the hopital and then do a PFT which it dropped me almost 15 points!!! I started crying and then they explained to me that some of our medications are Constrictirs and then they had me do albuterol and they returned to normal... I hate coughingup any blood!!! It ia one of my biggest fears, though I know it kind of comes with the territory... it used to be I would get really panicked and then it would take way to long to stop, so now I do a form of meditation when it happens... I know it sounds silly , but it wourks for me...
God Bless you Diane and know you are in my thoughts!!
xoxo
Sarah
 

SarahJean1976

New member
Diane, I will for sure keep you in my prayers... Though I want you to know that it isn't THAT uncommon I think, though it surprises me they didn't have you do a test runat the hospital before they prescribed it... My doctors were going to prescribe me something (can't remember wht it was)and they had me do it at the hopital and then do a PFT which it dropped me almost 15 points!!! I started crying and then they explained to me that some of our medications are Constrictirs and then they had me do albuterol and they returned to normal... I hate coughingup any blood!!! It ia one of my biggest fears, though I know it kind of comes with the territory... it used to be I would get really panicked and then it would take way to long to stop, so now I do a form of meditation when it happens... I know it sounds silly , but it wourks for me...
<br />God Bless you Diane and know you are in my thoughts!!
<br />xoxo
<br />Sarah
 

NYCLawGirl

New member
Diane, I am so sorry to hear you're not doing well right now. I know how frustrating it is to have infection after infection - believe me. The good news is it sounds as though this flare up was caught early and you have a good chance of knocking it out quickly and maybe even regaining some ground. And remember that while increased infections can definitely be a cause for concern in CF, there is also just the "dumb luck" factor sometimes. I know some of my infections happen just b/c i get a tiny virus or have something else weird happening in my body that is not CF related, and it's not so much of a true exacerbation as just the bacteria gaining a little ground while my body is otherwise distracted. Here's hoping that this clears up FAST and that you get a little break now. You deserve one for sure!

On another note, in my entirely unprofessional opinion, AzLi might not be the drug for you. Colistin does horrific things to my lungs, and I know others who don't tolerate TOBI. Not all antibiotis are created equal for all of us.
 

NYCLawGirl

New member
Diane, I am so sorry to hear you're not doing well right now. I know how frustrating it is to have infection after infection - believe me. The good news is it sounds as though this flare up was caught early and you have a good chance of knocking it out quickly and maybe even regaining some ground. And remember that while increased infections can definitely be a cause for concern in CF, there is also just the "dumb luck" factor sometimes. I know some of my infections happen just b/c i get a tiny virus or have something else weird happening in my body that is not CF related, and it's not so much of a true exacerbation as just the bacteria gaining a little ground while my body is otherwise distracted. Here's hoping that this clears up FAST and that you get a little break now. You deserve one for sure!

On another note, in my entirely unprofessional opinion, AzLi might not be the drug for you. Colistin does horrific things to my lungs, and I know others who don't tolerate TOBI. Not all antibiotis are created equal for all of us.
 

NYCLawGirl

New member
Diane, I am so sorry to hear you're not doing well right now. I know how frustrating it is to have infection after infection - believe me. The good news is it sounds as though this flare up was caught early and you have a good chance of knocking it out quickly and maybe even regaining some ground. And remember that while increased infections can definitely be a cause for concern in CF, there is also just the "dumb luck" factor sometimes. I know some of my infections happen just b/c i get a tiny virus or have something else weird happening in my body that is not CF related, and it's not so much of a true exacerbation as just the bacteria gaining a little ground while my body is otherwise distracted. Here's hoping that this clears up FAST and that you get a little break now. You deserve one for sure!

On another note, in my entirely unprofessional opinion, AzLi might not be the drug for you. Colistin does horrific things to my lungs, and I know others who don't tolerate TOBI. Not all antibiotis are created equal for all of us.
 

NYCLawGirl

New member
Diane, I am so sorry to hear you're not doing well right now. I know how frustrating it is to have infection after infection - believe me. The good news is it sounds as though this flare up was caught early and you have a good chance of knocking it out quickly and maybe even regaining some ground. And remember that while increased infections can definitely be a cause for concern in CF, there is also just the "dumb luck" factor sometimes. I know some of my infections happen just b/c i get a tiny virus or have something else weird happening in my body that is not CF related, and it's not so much of a true exacerbation as just the bacteria gaining a little ground while my body is otherwise distracted. Here's hoping that this clears up FAST and that you get a little break now. You deserve one for sure!

On another note, in my entirely unprofessional opinion, AzLi might not be the drug for you. Colistin does horrific things to my lungs, and I know others who don't tolerate TOBI. Not all antibiotis are created equal for all of us.
 

NYCLawGirl

New member
Diane, I am so sorry to hear you're not doing well right now. I know how frustrating it is to have infection after infection - believe me. The good news is it sounds as though this flare up was caught early and you have a good chance of knocking it out quickly and maybe even regaining some ground. And remember that while increased infections can definitely be a cause for concern in CF, there is also just the "dumb luck" factor sometimes. I know some of my infections happen just b/c i get a tiny virus or have something else weird happening in my body that is not CF related, and it's not so much of a true exacerbation as just the bacteria gaining a little ground while my body is otherwise distracted. Here's hoping that this clears up FAST and that you get a little break now. You deserve one for sure!
<br />
<br />On another note, in my entirely unprofessional opinion, AzLi might not be the drug for you. Colistin does horrific things to my lungs, and I know others who don't tolerate TOBI. Not all antibiotis are created equal for all of us.
 

kayleesgrandma

New member
Just wanted you to know that you are in my prayers! Like the others said, maybe you caught this early and will recover sooner, and maybe this isn't the drug for you! I hope you bouce back feelin better.<img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Just wanted you to know that you are in my prayers! Like the others said, maybe you caught this early and will recover sooner, and maybe this isn't the drug for you! I hope you bouce back feelin better.<img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Just wanted you to know that you are in my prayers! Like the others said, maybe you caught this early and will recover sooner, and maybe this isn't the drug for you! I hope you bouce back feelin better.<img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Just wanted you to know that you are in my prayers! Like the others said, maybe you caught this early and will recover sooner, and maybe this isn't the drug for you! I hope you bouce back feelin better.<img src="i/expressions/heart.gif" border="0">
 

kayleesgrandma

New member
Just wanted you to know that you are in my prayers! Like the others said, maybe you caught this early and will recover sooner, and maybe this isn't the drug for you! I hope you bouce back feelin better.<img src="i/expressions/heart.gif" border="0">
 
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