i forget how sick I get

K

kgfrompa

Guest
<br>Hi Everyone I am getting better as the IV is kicking in I forget on how sick I get and tend to let my infections get out of control. Since my mutation is a rare one it seems like I get sick in waves then it hits me like a train weakness and junk in my lungs.Question do others feel this way? And I get to the point of am I ever going to shake this.Since I was 50 when i found out i had CF and I am now 55 I guess this contributes to the fear and questionsThanks and hope everyone has a Happy New Year and unwraps each day like a gift Cant wait to unwrap each day in 2012
 
K

kgfrompa

Guest
<br>Hi Everyone I am getting better as the IV is kicking in I forget on how sick I get and tend to let my infections get out of control. Since my mutation is a rare one it seems like I get sick in waves then it hits me like a train weakness and junk in my lungs.Question do others feel this way? And I get to the point of am I ever going to shake this.Since I was 50 when i found out i had CF and I am now 55 I guess this contributes to the fear and questionsThanks and hope everyone has a Happy New Year and unwraps each day like a gift Cant wait to unwrap each day in 2012
 
M

Melissa75

Administrator
I am sorry you are feeling badly and needing IVs.
For me, I'll operate below baseline for weeks--plugs-small collapses, a little achy and tired--only to have it morph over the course of a day into pneumonia with fever, violent chills, and extreme pleuritic chest pain. I really don't know what my deal is, as the biggest issue for me is the atelectasis/inflammation/pain/chills/aches. This doesn't seem typical for non-CF bronchiectasis or CF, but maybe everyone has a unique twist on exacerbations.
I hear you on how it is taking longer to feel better after an exacerbation even when I'm on the correct antibiotics.
 
M

Melissa75

Administrator
I am sorry you are feeling badly and needing IVs.
For me, I'll operate below baseline for weeks--plugs-small collapses, a little achy and tired--only to have it morph over the course of a day into pneumonia with fever, violent chills, and extreme pleuritic chest pain. I really don't know what my deal is, as the biggest issue for me is the atelectasis/inflammation/pain/chills/aches. This doesn't seem typical for non-CF bronchiectasis or CF, but maybe everyone has a unique twist on exacerbations.
I hear you on how it is taking longer to feel better after an exacerbation even when I'm on the correct antibiotics.
 
K

kgfrompa

Guest
<br>Thanks for the kind words!And understanding It is the only place I can cry out
 
K

kgfrompa

Guest
<br>Thanks for the kind words!And understanding It is the only place I can cry out
 
C

CysticlyFIT

New member
Hi !!
<br>
<br>I do know how you are feeling,- this is why with CF it is important to get those IV antibiotics every 6 months or when the dr says, -even if we're feeling pretty good .<br>
<br>Its not unusual to go in feeling good or 'ok at baseline' and then feel terrible on the antibiotics,. I usually get quite sick, lose my appetite , lose some weight, have some fevers, and cough up unbelievable amounts of gunk and over all terrible fatigue, -all while on drugs that are suppose to help me !!!
<br>
<br>I think the immune system goes in over drive, it has been keeping up with so much bacteria, that when they die, the body detects this and gets hyperactive.
<br>
<br>Anyway, my point is, -give the antibiotics time, -sometimes up to a month-, but once your finished, you should feel much better! In the mean time, let your body rest, go for some walks, try to eat, and drink plenty fluids, do plenty vest/ neb treatments with CPT, and -don't get stressed,- the work project can wait, the family can wait, and demands in or at home can wait to,--- think of it as your vacation time for your body!!!
<br>
<br>Hope you feel well, !!! Sending a hug to you !!!
<br>
<br>
 
C

CysticlyFIT

New member
Hi !!
<br>
<br>I do know how you are feeling,- this is why with CF it is important to get those IV antibiotics every 6 months or when the dr says, -even if we're feeling pretty good .<br>
<br>Its not unusual to go in feeling good or 'ok at baseline' and then feel terrible on the antibiotics,. I usually get quite sick, lose my appetite , lose some weight, have some fevers, and cough up unbelievable amounts of gunk and over all terrible fatigue, -all while on drugs that are suppose to help me !!!
<br>
<br>I think the immune system goes in over drive, it has been keeping up with so much bacteria, that when they die, the body detects this and gets hyperactive.
<br>
<br>Anyway, my point is, -give the antibiotics time, -sometimes up to a month-, but once your finished, you should feel much better! In the mean time, let your body rest, go for some walks, try to eat, and drink plenty fluids, do plenty vest/ neb treatments with CPT, and -don't get stressed,- the work project can wait, the family can wait, and demands in or at home can wait to,--- think of it as your vacation time for your body!!!
<br>
<br>Hope you feel well, !!! Sending a hug to you !!!
<br>
<br>
 
G

gunelle

Guest
I know how you feel, I have had a long run of feeling good, that I forget how sick I get and feel. I have started oral antibiotics two days ago, after being off them since September 2011, becuase I have been coughing up blood and coughing ugly gunk up and starting to feel SOB and tired. I suppose we have to enjoy the good moments and battle the bad ones...
 
G

gunelle

Guest
I know how you feel, I have had a long run of feeling good, that I forget how sick I get and feel. I have started oral antibiotics two days ago, after being off them since September 2011, becuase I have been coughing up blood and coughing ugly gunk up and starting to feel SOB and tired. I suppose we have to enjoy the good moments and battle the bad ones...
 
I

islandgrrl

New member
Hi!

I know pretty much exactly how you feel. I was diagnosed about 3 years ago - I'm 50 now. It seems like my infections sneak up on me - I don't feel crappy until I'm REALLY sick and then it hits me like a ton of bricks. I hope you're feeling better!
 
I

islandgrrl

New member
Hi!

I know pretty much exactly how you feel. I was diagnosed about 3 years ago - I'm 50 now. It seems like my infections sneak up on me - I don't feel crappy until I'm REALLY sick and then it hits me like a ton of bricks. I hope you're feeling better!
 
A

azdesertrat

New member
Sorry you're feeling poorly; I know just how it is.
Pre-trans I used to plug along for a couple of months, battling daily fevers and eating vicodin for pleuritic pain.
I soldiered on & went to work every day- unless it was just too bad in which case I could request an easy day or just stay home. 95% of the time I worked through it.
It's not pleasant; it is our lot & we have to just deal with it.
Know that you are not alone. There are plenty of us out here and I for one am praying for you.
Take care, feel better... 'Pat'.
 
A

azdesertrat

New member
Sorry you're feeling poorly; I know just how it is.
Pre-trans I used to plug along for a couple of months, battling daily fevers and eating vicodin for pleuritic pain.
I soldiered on & went to work every day- unless it was just too bad in which case I could request an easy day or just stay home. 95% of the time I worked through it.
It's not pleasant; it is our lot & we have to just deal with it.
Know that you are not alone. There are plenty of us out here and I for one am praying for you.
Take care, feel better... 'Pat'.
 
J

JPintheHouse

Guest
I was just wondering myself if I can still determine when I'm actually sick and when it's just CF acting up. I feel like I've been getting virus after virus and it's getting old! I'm on antibiotics now because my lungs were and still are filled with gunk. Clinic is in a couple weeks for me. Hope you are feeling better by now. Sometimes the weather changes are what fire things up...
 
J

JPintheHouse

Guest
I was just wondering myself if I can still determine when I'm actually sick and when it's just CF acting up. I feel like I've been getting virus after virus and it's getting old! I'm on antibiotics now because my lungs were and still are filled with gunk. Clinic is in a couple weeks for me. Hope you are feeling better by now. Sometimes the weather changes are what fire things up...
 
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