Well Im Out Of Hospital

P

Proxy

New member
Usually my pft are about 50%, but when I declined to 44% then 40% they thought it was time I was admitted.I was in for 2 weeks but recovery seemed slow, I just wanted to get home and back to life where I thought I would recover faster after a 2 week tune-up. Before I was discharged I did a PFT test and left and today I got the results, turns out I am now 36%, my CF nurse told me I will have someone come here on Thursday and i'll wear a oxygen monitor overnight to see how low it drops then on Tuesday I will have a clinic so they can "decide what to do with me". I am very nervous and discouraged,have any of you had this problem of being worse coming out then when you went in?
Any advice would be most welcome.
Thankyou
 
P

Proxy

New member
Usually my pft are about 50%, but when I declined to 44% then 40% they thought it was time I was admitted.I was in for 2 weeks but recovery seemed slow, I just wanted to get home and back to life where I thought I would recover faster after a 2 week tune-up. Before I was discharged I did a PFT test and left and today I got the results, turns out I am now 36%, my CF nurse told me I will have someone come here on Thursday and i'll wear a oxygen monitor overnight to see how low it drops then on Tuesday I will have a clinic so they can "decide what to do with me". I am very nervous and discouraged,have any of you had this problem of being worse coming out then when you went in?
Any advice would be most welcome.
Thankyou
 
P

Proxy

New member
Usually my pft are about 50%, but when I declined to 44% then 40% they thought it was time I was admitted.I was in for 2 weeks but recovery seemed slow, I just wanted to get home and back to life where I thought I would recover faster after a 2 week tune-up. Before I was discharged I did a PFT test and left and today I got the results, turns out I am now 36%, my CF nurse told me I will have someone come here on Thursday and i'll wear a oxygen monitor overnight to see how low it drops then on Tuesday I will have a clinic so they can "decide what to do with me". I am very nervous and discouraged,have any of you had this problem of being worse coming out then when you went in?
<br />Any advice would be most welcome.
<br />Thankyou
 
C

colinmaydahl

New member
Sounds like You might need different IV's. I have only left the hospital once when my PFTs were down, and that was after 4 weeks of IVs and my body was needing a break. I took a break, got lots of exercise, and wound up getting better. Get out side if You can, walk, enjoy the sun.

Colin
 
C

colinmaydahl

New member
Sounds like You might need different IV's. I have only left the hospital once when my PFTs were down, and that was after 4 weeks of IVs and my body was needing a break. I took a break, got lots of exercise, and wound up getting better. Get out side if You can, walk, enjoy the sun.

Colin
 
C

colinmaydahl

New member
Sounds like You might need different IV's. I have only left the hospital once when my PFTs were down, and that was after 4 weeks of IVs and my body was needing a break. I took a break, got lots of exercise, and wound up getting better. Get out side if You can, walk, enjoy the sun.
<br />
<br />Colin
 
J

juliepie

New member
That happened to me once, and it turned out to be the wrong antibiotics. Turns out I had a slow-growing gram-positive AFB that they didn't originally find because they didn't let the culture grow out long enough. Found it a few months later when I REALLY went downhill... took another 8 weeks to identify it and get the antibiotic sensitivities done. Make sure they do a really thorough suptum culture, have them test for all kinds of stuff so they catch anything! Or, it could just be that your current colonies have developed a level of tolerance or resistance to the meds you were on. In any case, a thorough culture and probably an antibiotic switch is your best bet! Good luck! Try not to be discouraged... CF care most of the time falls under the "art" of medicine and not the "science" and there is an unfortunate amount of trial and error.
 
J

juliepie

New member
That happened to me once, and it turned out to be the wrong antibiotics. Turns out I had a slow-growing gram-positive AFB that they didn't originally find because they didn't let the culture grow out long enough. Found it a few months later when I REALLY went downhill... took another 8 weeks to identify it and get the antibiotic sensitivities done. Make sure they do a really thorough suptum culture, have them test for all kinds of stuff so they catch anything! Or, it could just be that your current colonies have developed a level of tolerance or resistance to the meds you were on. In any case, a thorough culture and probably an antibiotic switch is your best bet! Good luck! Try not to be discouraged... CF care most of the time falls under the "art" of medicine and not the "science" and there is an unfortunate amount of trial and error.
 
J

juliepie

New member
That happened to me once, and it turned out to be the wrong antibiotics. Turns out I had a slow-growing gram-positive AFB that they didn't originally find because they didn't let the culture grow out long enough. Found it a few months later when I REALLY went downhill... took another 8 weeks to identify it and get the antibiotic sensitivities done. Make sure they do a really thorough suptum culture, have them test for all kinds of stuff so they catch anything! Or, it could just be that your current colonies have developed a level of tolerance or resistance to the meds you were on. In any case, a thorough culture and probably an antibiotic switch is your best bet! Good luck! Try not to be discouraged... CF care most of the time falls under the "art" of medicine and not the "science" and there is an unfortunate amount of trial and error.
 
P

Proxy

New member
thankyou for your replies <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll do my best to get better and not get discouraged
 
P

Proxy

New member
thankyou for your replies <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll do my best to get better and not get discouraged
 
P

Proxy

New member
thankyou for your replies <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll do my best to get better and not get discouraged
 
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