3rd hospitalization in EIGHT months!!!

[Jane]

Oh UGH Caitlin! I am so sorry to read you are going back on IVs. It is so frustrating when things start to change from your norm. This year the boys have been "in" more than usual, so the doctors have been trying different combos with them to try to find the right one.
<br />
<br />Josh loves his port (except for the bump on his skinny chest <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is so much easier!
<br />Good luck tomorrow. Keep us posted.

 

[bethylove]

Hi Caitlin,

I used to go in the hospital once a year, or once every year an a half. I only started going in when I was 15. Then when I moved I found myself going in every 2-3 months. I would come out feeling great, only to feel like crap 4 days later. The next two months were spent doing oral antibiotics and feeling crappy. After 4 stays I finally left feeling good. One thing that helped was starting insulin. Turns out my sugars had been whacky all that time I was sick which led to even more weight loss, fatigue, etc. As I got better I needed less and less insulin. I now only check my sugars.

Another thing that helped me stay out of the hospital was a schedule. I started a nanny job which I had set hours each week and I was able to maintain my lung function for over 8 months! no fluctuation. Unheard of for me!! Especially after having that year of going in every 3 months, it was amazing. I felt awesome the whole time.

I learned a lot about my CF that year. Things that seem to help me keep my health under control are little things I never really thought of but make sense.
-Going to bed the same time each night, and waking up the same time each morning --CRUCIAL for me!!
- sticking to a morning routine for my meds (pulmo. tobi/cayston & 30 minutes vest) -- I actually felt sick on the days I didn't do this!--
- eating around the same time every day. (Nannying was great because it forced me to have more regular eating hours. Eat at 6 am, snack with girls when they eat at 8, snack at 10:30, lunch a 12:30, snack at 4 then home to dinner) I was even able to gain some weight!
- Keeping my stress level down. Working and being on such a routine I didn't have a lot of opportunity for stressful situations to arise. And if they did, I always had a constant in my life (working m-th) As soon as I finished working, started the process of moving, traveling to visit family, making new appts with new clinics, etc.... I became sick!! Lo and behold I've been IV's each month for the past 3 months. =(

I'm working to get back to my schedule as that's really what I truly believe kept me so healthy last year!
Best of luck to you! I hope you feel better.

 

[bethylove]

Hi Caitlin,

I used to go in the hospital once a year, or once every year an a half. I only started going in when I was 15. Then when I moved I found myself going in every 2-3 months. I would come out feeling great, only to feel like crap 4 days later. The next two months were spent doing oral antibiotics and feeling crappy. After 4 stays I finally left feeling good. One thing that helped was starting insulin. Turns out my sugars had been whacky all that time I was sick which led to even more weight loss, fatigue, etc. As I got better I needed less and less insulin. I now only check my sugars.

Another thing that helped me stay out of the hospital was a schedule. I started a nanny job which I had set hours each week and I was able to maintain my lung function for over 8 months! no fluctuation. Unheard of for me!! Especially after having that year of going in every 3 months, it was amazing. I felt awesome the whole time.

I learned a lot about my CF that year. Things that seem to help me keep my health under control are little things I never really thought of but make sense.
-Going to bed the same time each night, and waking up the same time each morning --CRUCIAL for me!!
- sticking to a morning routine for my meds (pulmo. tobi/cayston & 30 minutes vest) -- I actually felt sick on the days I didn't do this!--
- eating around the same time every day. (Nannying was great because it forced me to have more regular eating hours. Eat at 6 am, snack with girls when they eat at 8, snack at 10:30, lunch a 12:30, snack at 4 then home to dinner) I was even able to gain some weight!
- Keeping my stress level down. Working and being on such a routine I didn't have a lot of opportunity for stressful situations to arise. And if they did, I always had a constant in my life (working m-th) As soon as I finished working, started the process of moving, traveling to visit family, making new appts with new clinics, etc.... I became sick!! Lo and behold I've been IV's each month for the past 3 months. =(

I'm working to get back to my schedule as that's really what I truly believe kept me so healthy last year!
Best of luck to you! I hope you feel better.

 

[bethylove]

Hi Caitlin,
<br />
<br />I used to go in the hospital once a year, or once every year an a half. I only started going in when I was 15. Then when I moved I found myself going in every 2-3 months. I would come out feeling great, only to feel like crap 4 days later. The next two months were spent doing oral antibiotics and feeling crappy. After 4 stays I finally left feeling good. One thing that helped was starting insulin. Turns out my sugars had been whacky all that time I was sick which led to even more weight loss, fatigue, etc. As I got better I needed less and less insulin. I now only check my sugars.
<br />
<br />Another thing that helped me stay out of the hospital was a schedule. I started a nanny job which I had set hours each week and I was able to maintain my lung function for over 8 months! no fluctuation. Unheard of for me!! Especially after having that year of going in every 3 months, it was amazing. I felt awesome the whole time.
<br />
<br />I learned a lot about my CF that year. Things that seem to help me keep my health under control are little things I never really thought of but make sense.
<br />-Going to bed the same time each night, and waking up the same time each morning --CRUCIAL for me!!
<br />- sticking to a morning routine for my meds (pulmo. tobi/cayston & 30 minutes vest) -- I actually felt sick on the days I didn't do this!--
<br />- eating around the same time every day. (Nannying was great because it forced me to have more regular eating hours. Eat at 6 am, snack with girls when they eat at 8, snack at 10:30, lunch a 12:30, snack at 4 then home to dinner) I was even able to gain some weight!
<br />- Keeping my stress level down. Working and being on such a routine I didn't have a lot of opportunity for stressful situations to arise. And if they did, I always had a constant in my life (working m-th) As soon as I finished working, started the process of moving, traveling to visit family, making new appts with new clinics, etc.... I became sick!! Lo and behold I've been IV's each month for the past 3 months. =(
<br />
<br />I'm working to get back to my schedule as that's really what I truly believe kept me so healthy last year!
<br />Best of luck to you! I hope you feel better.

 

[MCGrad2006]

Updated in original post.

 

[MCGrad2006]

Updated in original post.

 

[MCGrad2006]

<BR>Updated in original post.

 

[JORDYSMOM]

<P>I'm sorry you are stuck until at least Friday.  Hope your levels are good, and you can go home then.  </P>
<P> </P>
<P>Stacey</P>

 

[JORDYSMOM]

<P>I'm sorry you are stuck until at least Friday. Hope your levels are good, and you can go home then. </P>
<P></P>
<P>Stacey</P>

 

[JORDYSMOM]

<P><BR>I'm sorry you are stuck until at least Friday. Hope your levels are good, and you can go home then. </P>
<P></P>
<P>Stacey</P>

 

[MCGrad2006]

Thank you all for your thoughts! It is frustrating but I am hopeful for this to work. BTW updated in original post!

 

[MCGrad2006]

Thank you all for your thoughts! It is frustrating but I am hopeful for this to work. BTW updated in original post!

 

[MCGrad2006]

Thank you all for your thoughts! It is frustrating but I am hopeful for this to work. BTW updated in original post!