what to do?

J

jaimers

Super Moderator
so i'm on day 13 in the hospital doing IV antibiotics and when i came in my pfts were at 56% after a month of cayston and today when i did pfts again they were only at 58% and my small airways were actually worse. it took me about 5 blows to get a 58%, the others were a little lower.
I usually only do 2 weeks of IVs but I've always had much better response to the meds and my pfts have bounced back to at least 60-61%. i'm not coughing stuff up really and do feel better but when i do feel like i have to cough it's like the mucus is stuck and won't come up. even after nebs.

i'm supposed to go home tomorrow but the docs are kind of leaving it up to me if i want to stay longer. i don't really know what to do. i'm disappointed that my pfts didn't bounce back, but i do feel more clear which is a good sign. <sigh>

what are your thoughts?
 
J

jaimers

Super Moderator
so i'm on day 13 in the hospital doing IV antibiotics and when i came in my pfts were at 56% after a month of cayston and today when i did pfts again they were only at 58% and my small airways were actually worse. it took me about 5 blows to get a 58%, the others were a little lower.
I usually only do 2 weeks of IVs but I've always had much better response to the meds and my pfts have bounced back to at least 60-61%. i'm not coughing stuff up really and do feel better but when i do feel like i have to cough it's like the mucus is stuck and won't come up. even after nebs.

i'm supposed to go home tomorrow but the docs are kind of leaving it up to me if i want to stay longer. i don't really know what to do. i'm disappointed that my pfts didn't bounce back, but i do feel more clear which is a good sign. <sigh>

what are your thoughts?
 
J

jaimers

Super Moderator
so i'm on day 13 in the hospital doing IV antibiotics and when i came in my pfts were at 56% after a month of cayston and today when i did pfts again they were only at 58% and my small airways were actually worse. it took me about 5 blows to get a 58%, the others were a little lower.
<br /> I usually only do 2 weeks of IVs but I've always had much better response to the meds and my pfts have bounced back to at least 60-61%. i'm not coughing stuff up really and do feel better but when i do feel like i have to cough it's like the mucus is stuck and won't come up. even after nebs.
<br />
<br />i'm supposed to go home tomorrow but the docs are kind of leaving it up to me if i want to stay longer. i don't really know what to do. i'm disappointed that my pfts didn't bounce back, but i do feel more clear which is a good sign. <sigh>
<br />
<br />what are your thoughts?
 
K

kgfrompa

Guest
You sure hit home to how I feel I was in the hospital 12 days got home Monday I went in for a pneumothorax in my left lung.But since I have been home I am not coughing up any thing I feel tight in my chest and sooo much pain in My right lung.Doctors will repeat I cat scan On monday if I dont inprove But I am feeling very sick and weak and I was on IV for Six weeks every 8 hours. So reading your post made me think how much I am feeling the same thank you hope you get better soon.
 
K

kgfrompa

Guest
You sure hit home to how I feel I was in the hospital 12 days got home Monday I went in for a pneumothorax in my left lung.But since I have been home I am not coughing up any thing I feel tight in my chest and sooo much pain in My right lung.Doctors will repeat I cat scan On monday if I dont inprove But I am feeling very sick and weak and I was on IV for Six weeks every 8 hours. So reading your post made me think how much I am feeling the same thank you hope you get better soon.
 
K

kgfrompa

Guest
You sure hit home to how I feel I was in the hospital 12 days got home Monday I went in for a pneumothorax in my left lung.But since I have been home I am not coughing up any thing I feel tight in my chest and sooo much pain in My right lung.Doctors will repeat I cat scan On monday if I dont inprove But I am feeling very sick and weak and I was on IV for Six weeks every 8 hours. So reading your post made me think how much I am feeling the same thank you hope you get better soon.
 
M

my65roses4me

New member
I know its difficult to not have the same results as the last hospitalization. But for me if I am feeling better than I was went I went in and my numbers are decent I always chalk it up to just being in bed too long and the IV meds making me feel bad. When I feel like you do now I usually make the decision to go home. After being home for awhile and get more active and into my routine I usually bounce back the rest of the way. Especially when the meds are finally out of my system. They can make me feel bad and I will think I am still sick and its just the meds.
I joke around and say its "chemo" for cf.
Hope you are able to come to a decision and be ok with what you decide!!
Good Luck and keep us posted!!
 
M

my65roses4me

New member
I know its difficult to not have the same results as the last hospitalization. But for me if I am feeling better than I was went I went in and my numbers are decent I always chalk it up to just being in bed too long and the IV meds making me feel bad. When I feel like you do now I usually make the decision to go home. After being home for awhile and get more active and into my routine I usually bounce back the rest of the way. Especially when the meds are finally out of my system. They can make me feel bad and I will think I am still sick and its just the meds.
I joke around and say its "chemo" for cf.
Hope you are able to come to a decision and be ok with what you decide!!
Good Luck and keep us posted!!
 
M

my65roses4me

New member
I know its difficult to not have the same results as the last hospitalization. But for me if I am feeling better than I was went I went in and my numbers are decent I always chalk it up to just being in bed too long and the IV meds making me feel bad. When I feel like you do now I usually make the decision to go home. After being home for awhile and get more active and into my routine I usually bounce back the rest of the way. Especially when the meds are finally out of my system. They can make me feel bad and I will think I am still sick and its just the meds.
<br />I joke around and say its "chemo" for cf.
<br />Hope you are able to come to a decision and be ok with what you decide!!
<br />Good Luck and keep us posted!!
 
C

colinmaydahl

New member
Maybe different antibiotics? If I don't start to bounce back in a few days I will change drugs. Sorry You have been in for 2 weeks, maybe new drugs and home IV's?

Colin
28m/ CF
 
C

colinmaydahl

New member
Maybe different antibiotics? If I don't start to bounce back in a few days I will change drugs. Sorry You have been in for 2 weeks, maybe new drugs and home IV's?

Colin
28m/ CF
 
C

colinmaydahl

New member
Maybe different antibiotics? If I don't start to bounce back in a few days I will change drugs. Sorry You have been in for 2 weeks, maybe new drugs and home IV's?
<br />
<br />Colin
<br />28m/ CF
 
S

sunflower

New member
I normally decide on how I am feeling. If u are walking more around the hospital or do they have treadmill u can use it n see how you are feeling. Ask yourself are they the same meds as last time? You will know yourself if you are feeling way better when then when you where admitted
Mind yourself.


Sunflower,
40yrs old, ABPA, Multi resistant, Asthma, Bronchi, PA for the last two years.
Fiancé a carrier df508
Gene type Df508/P67L
 
S

sunflower

New member
I normally decide on how I am feeling. If u are walking more around the hospital or do they have treadmill u can use it n see how you are feeling. Ask yourself are they the same meds as last time? You will know yourself if you are feeling way better when then when you where admitted
Mind yourself.


Sunflower,
40yrs old, ABPA, Multi resistant, Asthma, Bronchi, PA for the last two years.
Fiancé a carrier df508
Gene type Df508/P67L
 
S

sunflower

New member
I normally decide on how I am feeling. If u are walking more around the hospital or do they have treadmill u can use it n see how you are feeling. Ask yourself are they the same meds as last time? You will know yourself if you are feeling way better when then when you where admitted
<br />Mind yourself.
<br />
<br />
<br />Sunflower,
<br />40yrs old, ABPA, Multi resistant, Asthma, Bronchi, PA for the last two years.
<br />Fiancé a carrier df508
<br />Gene type Df508/P67L
 
P

Proxy

New member
Ive been in hospital 13 days now,when I was admitted my pft's were 40 and they havent budged.They gave me the decision on if I want to go home tommorow or stay another week.Personally I chose to go home,It takes me longer and longer to recover from infection and I find just getting out fo bed and going back to life helps more then another week in hospital.
I wish you the best and good luck in whatever you choose
 
P

Proxy

New member
Ive been in hospital 13 days now,when I was admitted my pft's were 40 and they havent budged.They gave me the decision on if I want to go home tommorow or stay another week.Personally I chose to go home,It takes me longer and longer to recover from infection and I find just getting out fo bed and going back to life helps more then another week in hospital.
I wish you the best and good luck in whatever you choose
 
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