Interesting tidbits that are going on with me

Diane

New member
Heres some interesting tidbits about what has been going on with me lately.
I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On the 12th day i had to pull the one iv out because it was very painful and i was sick of feeling it. I had a car show the next day and called my nurse and told her where i was and asked if she could come there and re-insert another one. So she did and there we were in a bar ( non-smoking) in a corner booth and she was giving me an iv.( My home nurse is SO cool) I got a couple of the guys in my car club to stand around us and make it look like we were all talking. It worked out great ! By that night i knocked the iv out and said thats it ! I immediately started on oral antibiotics till i could talk to my Dr. when i saw him on Wed. 3 days later. When i was there i told him i actually felt better than i had in weeks and we did a sputum sample to see what i was sensitive to.
You may remember a while ago i made a post called "cautiously optimistic" because thru my ordeal of being in the hospital for 3 embolizations almost back to back and being on ivs for 4 months my sputum cultures were coming back cepacia negative, but they had a new bug called aceniobacter ( sp?). Well my Dr. called today to tell me <b>I am still cepacia free </b>and <b>acenobacter free as well</b>. <b>This means i have been cepacia free for at least 6-7 months</b>. I am still cautiously optimistic because i know how rare it is to get rid of cepacia fully. But believe me i am thrilled to have some good news <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am feeling a bit better finally and getting active which is the hardest part since i havent been able to be too active in the past few months. Its amazing how out of shape i got in , in just a few months. I am starting to walk again on my treadmill, i am going to car shows again and starting to live again but with limits. I take my O2 with me everywhere i go, and i am finally comfortable using it in front of people. I dont use it all the time but when i need it , i use it. I am eating more and i look forward to gaining back the weight i lost during my hospitalizations in Jan. - March.
Well thats my interesting tidbits for now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Heres some interesting tidbits about what has been going on with me lately.
I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On the 12th day i had to pull the one iv out because it was very painful and i was sick of feeling it. I had a car show the next day and called my nurse and told her where i was and asked if she could come there and re-insert another one. So she did and there we were in a bar ( non-smoking) in a corner booth and she was giving me an iv.( My home nurse is SO cool) I got a couple of the guys in my car club to stand around us and make it look like we were all talking. It worked out great ! By that night i knocked the iv out and said thats it ! I immediately started on oral antibiotics till i could talk to my Dr. when i saw him on Wed. 3 days later. When i was there i told him i actually felt better than i had in weeks and we did a sputum sample to see what i was sensitive to.
You may remember a while ago i made a post called "cautiously optimistic" because thru my ordeal of being in the hospital for 3 embolizations almost back to back and being on ivs for 4 months my sputum cultures were coming back cepacia negative, but they had a new bug called aceniobacter ( sp?). Well my Dr. called today to tell me <b>I am still cepacia free </b>and <b>acenobacter free as well</b>. <b>This means i have been cepacia free for at least 6-7 months</b>. I am still cautiously optimistic because i know how rare it is to get rid of cepacia fully. But believe me i am thrilled to have some good news <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am feeling a bit better finally and getting active which is the hardest part since i havent been able to be too active in the past few months. Its amazing how out of shape i got in , in just a few months. I am starting to walk again on my treadmill, i am going to car shows again and starting to live again but with limits. I take my O2 with me everywhere i go, and i am finally comfortable using it in front of people. I dont use it all the time but when i need it , i use it. I am eating more and i look forward to gaining back the weight i lost during my hospitalizations in Jan. - March.
Well thats my interesting tidbits for now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Heres some interesting tidbits about what has been going on with me lately.
I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On the 12th day i had to pull the one iv out because it was very painful and i was sick of feeling it. I had a car show the next day and called my nurse and told her where i was and asked if she could come there and re-insert another one. So she did and there we were in a bar ( non-smoking) in a corner booth and she was giving me an iv.( My home nurse is SO cool) I got a couple of the guys in my car club to stand around us and make it look like we were all talking. It worked out great ! By that night i knocked the iv out and said thats it ! I immediately started on oral antibiotics till i could talk to my Dr. when i saw him on Wed. 3 days later. When i was there i told him i actually felt better than i had in weeks and we did a sputum sample to see what i was sensitive to.
You may remember a while ago i made a post called "cautiously optimistic" because thru my ordeal of being in the hospital for 3 embolizations almost back to back and being on ivs for 4 months my sputum cultures were coming back cepacia negative, but they had a new bug called aceniobacter ( sp?). Well my Dr. called today to tell me <b>I am still cepacia free </b>and <b>acenobacter free as well</b>. <b>This means i have been cepacia free for at least 6-7 months</b>. I am still cautiously optimistic because i know how rare it is to get rid of cepacia fully. But believe me i am thrilled to have some good news <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am feeling a bit better finally and getting active which is the hardest part since i havent been able to be too active in the past few months. Its amazing how out of shape i got in , in just a few months. I am starting to walk again on my treadmill, i am going to car shows again and starting to live again but with limits. I take my O2 with me everywhere i go, and i am finally comfortable using it in front of people. I dont use it all the time but when i need it , i use it. I am eating more and i look forward to gaining back the weight i lost during my hospitalizations in Jan. - March.
Well thats my interesting tidbits for now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Heres some interesting tidbits about what has been going on with me lately.
I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On the 12th day i had to pull the one iv out because it was very painful and i was sick of feeling it. I had a car show the next day and called my nurse and told her where i was and asked if she could come there and re-insert another one. So she did and there we were in a bar ( non-smoking) in a corner booth and she was giving me an iv.( My home nurse is SO cool) I got a couple of the guys in my car club to stand around us and make it look like we were all talking. It worked out great ! By that night i knocked the iv out and said thats it ! I immediately started on oral antibiotics till i could talk to my Dr. when i saw him on Wed. 3 days later. When i was there i told him i actually felt better than i had in weeks and we did a sputum sample to see what i was sensitive to.
You may remember a while ago i made a post called "cautiously optimistic" because thru my ordeal of being in the hospital for 3 embolizations almost back to back and being on ivs for 4 months my sputum cultures were coming back cepacia negative, but they had a new bug called aceniobacter ( sp?). Well my Dr. called today to tell me <b>I am still cepacia free </b>and <b>acenobacter free as well</b>. <b>This means i have been cepacia free for at least 6-7 months</b>. I am still cautiously optimistic because i know how rare it is to get rid of cepacia fully. But believe me i am thrilled to have some good news <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am feeling a bit better finally and getting active which is the hardest part since i havent been able to be too active in the past few months. Its amazing how out of shape i got in , in just a few months. I am starting to walk again on my treadmill, i am going to car shows again and starting to live again but with limits. I take my O2 with me everywhere i go, and i am finally comfortable using it in front of people. I dont use it all the time but when i need it , i use it. I am eating more and i look forward to gaining back the weight i lost during my hospitalizations in Jan. - March.
Well thats my interesting tidbits for now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Heres some interesting tidbits about what has been going on with me lately.
<br />I decided to go back on iv's 2 weeks ago ( peripherally) i wasnt feeling particularly sick or anytjhing but i was running some low grade fevers 99.3 - 100.) every day twice a day and thought iv's might help with it. On the 12th day i had to pull the one iv out because it was very painful and i was sick of feeling it. I had a car show the next day and called my nurse and told her where i was and asked if she could come there and re-insert another one. So she did and there we were in a bar ( non-smoking) in a corner booth and she was giving me an iv.( My home nurse is SO cool) I got a couple of the guys in my car club to stand around us and make it look like we were all talking. It worked out great ! By that night i knocked the iv out and said thats it ! I immediately started on oral antibiotics till i could talk to my Dr. when i saw him on Wed. 3 days later. When i was there i told him i actually felt better than i had in weeks and we did a sputum sample to see what i was sensitive to.
<br />You may remember a while ago i made a post called "cautiously optimistic" because thru my ordeal of being in the hospital for 3 embolizations almost back to back and being on ivs for 4 months my sputum cultures were coming back cepacia negative, but they had a new bug called aceniobacter ( sp?). Well my Dr. called today to tell me <b>I am still cepacia free </b>and <b>acenobacter free as well</b>. <b>This means i have been cepacia free for at least 6-7 months</b>. I am still cautiously optimistic because i know how rare it is to get rid of cepacia fully. But believe me i am thrilled to have some good news <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am feeling a bit better finally and getting active which is the hardest part since i havent been able to be too active in the past few months. Its amazing how out of shape i got in , in just a few months. I am starting to walk again on my treadmill, i am going to car shows again and starting to live again but with limits. I take my O2 with me everywhere i go, and i am finally comfortable using it in front of people. I dont use it all the time but when i need it , i use it. I am eating more and i look forward to gaining back the weight i lost during my hospitalizations in Jan. - March.
<br />Well thats my interesting tidbits for now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jeana

New member
Fantastic! I was rid of PA for about a year and a half, after culturing it for 10 years. It gives me hope that I can get rid of it again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jeana

New member
Fantastic! I was rid of PA for about a year and a half, after culturing it for 10 years. It gives me hope that I can get rid of it again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jeana

New member
Fantastic! I was rid of PA for about a year and a half, after culturing it for 10 years. It gives me hope that I can get rid of it again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jeana

New member
Fantastic! I was rid of PA for about a year and a half, after culturing it for 10 years. It gives me hope that I can get rid of it again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Jeana

New member
Fantastic! I was rid of PA for about a year and a half, after culturing it for 10 years. It gives me hope that I can get rid of it again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
Ah, Diane! This is GREAT news!!! I know that cautiously optimistic feeling too, but it is certainly great you were able to get rid of it, if even just for a year or two... so be it! It just gives your lungs that much time to be a little more clear and cepacia-free, which has to be a relief to them!

I hope you start feeling better and can get a PICC or something so you don't have to do another peripheral iv! I loved your story about the bar... Very cool. Makes me look at CF as a more "everyday-managable" disease... I know its not always this way, but things like that make me smile and think we can do this!!!

All my best...
 

ladybug

New member
Ah, Diane! This is GREAT news!!! I know that cautiously optimistic feeling too, but it is certainly great you were able to get rid of it, if even just for a year or two... so be it! It just gives your lungs that much time to be a little more clear and cepacia-free, which has to be a relief to them!

I hope you start feeling better and can get a PICC or something so you don't have to do another peripheral iv! I loved your story about the bar... Very cool. Makes me look at CF as a more "everyday-managable" disease... I know its not always this way, but things like that make me smile and think we can do this!!!

All my best...
 

ladybug

New member
Ah, Diane! This is GREAT news!!! I know that cautiously optimistic feeling too, but it is certainly great you were able to get rid of it, if even just for a year or two... so be it! It just gives your lungs that much time to be a little more clear and cepacia-free, which has to be a relief to them!

I hope you start feeling better and can get a PICC or something so you don't have to do another peripheral iv! I loved your story about the bar... Very cool. Makes me look at CF as a more "everyday-managable" disease... I know its not always this way, but things like that make me smile and think we can do this!!!

All my best...
 

ladybug

New member
Ah, Diane! This is GREAT news!!! I know that cautiously optimistic feeling too, but it is certainly great you were able to get rid of it, if even just for a year or two... so be it! It just gives your lungs that much time to be a little more clear and cepacia-free, which has to be a relief to them!

I hope you start feeling better and can get a PICC or something so you don't have to do another peripheral iv! I loved your story about the bar... Very cool. Makes me look at CF as a more "everyday-managable" disease... I know its not always this way, but things like that make me smile and think we can do this!!!

All my best...
 

ladybug

New member
Ah, Diane! This is GREAT news!!! I know that cautiously optimistic feeling too, but it is certainly great you were able to get rid of it, if even just for a year or two... so be it! It just gives your lungs that much time to be a little more clear and cepacia-free, which has to be a relief to them!
<br />
<br />I hope you start feeling better and can get a PICC or something so you don't have to do another peripheral iv! I loved your story about the bar... Very cool. Makes me look at CF as a more "everyday-managable" disease... I know its not always this way, but things like that make me smile and think we can do this!!!
<br />
<br />All my best...
 
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