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Cystic Fibrosis
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Posted 7/29/2008 1:38 AM (GMT 0)
Hi, I am Jessie 23 with CF. I was just wondering if anyone does a daily routine the do to help then get through everyday. For example: how many treatment a day, exerise, medications and so on. I want to know if anyone is doing anything different and if it is working. Please let me know so I can get some ideas.

 

  Thank you,

         Jessie

Posted 7/29/2008 5:13 PM (GMT 0)
Hi there Jessie,

I don't really have much of a routine at the minute, due too my life just been spread out all over the place. Still getting used too having something too do.

Usually it's handfull of meds with breakfast-if I remember breakfast or, aslong as I'm not doing anything that starts early morning. If not then my breakfast dose moves too dinner time. If I'm on antibiotics and need 3 doses in a day, my second dose will be either dinner or tea time, my 3rd dose will be tea time or before I go too bed.
I always have my mirtazapine, just before I go too bed.
Physio I do once or twice a day-only 3 times a week if I'm well, and am busy. Increased too more in hopsital (Get PEP out whenever I'm bored, so like 10 times a day.)

I dread them ever finding a neb too suit me again. The 2 antib's they use in neb-I'm allergic too now. I'd never fit it in if they did find something though. I couldnt' fit it into the way I currently do things-that's for sure.

Excercise-I go too physio every week-2weeks and they work me hard. Other than that, I really on the little walks too and from places, like too the shops. As I have a muscle condition aswell, I can't do too much or I feel it for the next 3 days. I also tire out really quickly.
Posted 8/17/2008 11:54 PM (GMT 0)
Hi Jessie. My name is Megan and I'm a 21 year old with CF. My current routine is a little different than normal but I shall include both normal and the currently crazy one :-).

I had sinus surgery on August 1, and due to the high levels of MRSA and pseudomonas (which I can never spell) I was put on a picc line and am currently receiving 5 hours of IV antibiotics a day, so that makes my usual schedule a little messed up. It's all preventative to try and get rid of it, thankfully but it still stinks to be home-bound because of it.

My normal routine depends on the month. I am on inhaled TOBI on 28 days, off 28 days so if I'm on TOBI it adds some time to my routine.

I usually get up around the same time everyday due to school or work. I then check my blood sugar (as I have been diagnosed with cystic fibrosis related diabetes) and then I eat breakfast with my enzymes and a supplement of accedopholus ( again I can't spell, I'm sorry lol) which helps to put good bacteria back in my body due to the constant strain from antibiotics.

From there I do my morning nebs. I do albuterol with my thAIRapy vest or accopella. I then do TOBI if it is one of my on months

From there I make sure to check my blood sugar two hours after breakfast and I always keep something like a granola bar with me for any lows

After that comes a large lunch to try and keep my calorie intake up. I usually try to eat 4-5 good meals a day to ensure a high calorie intake.

From there I am usually in class or at work and the next time I get is dinner time where again, checking of sugar and then trying to add a huge amount of calories.

At night, I do the thAIRapy vest again with albuterol, pulmozyme, and then TOBI if I'm on it for that month. With my nighttime snack (usually a pretty large snack, more like a meal) I take my azithromyacin every MWF to help reduce levels of either MRSA or psuedomonas in my body (i'm not sure which it is for). I also try my best to remember to incorporate vitamins but sometimes I forget. I have bought a pill case, but it's so hard for me to remember.

After dinner, I try to bike ride, run, or take a walk at least to ensure SOME excercise. With the PICC line, I haven't been allowed out of the house, but I normally try to involve some excercise. If you have ANY questions please don't hesitate to respond and ask.

Good luck and my prayers and thoughts are with you!

Meg
Posted 8/27/2008 10:41 AM (GMT 0)
Hi jessie. my name is hazel I dont have cf ,my six year old daughter has so i'll give you a quick run down of her day . IN the morning she takes her nebs thats ventolin then she has an accapella thats what she does her physio with its working well wityh her, then she takes another neb its eather tobi 1 month and colomycin the other month. Up untill a little while ago she was on Polmozyme she had to take that an hour and a half before her other nebs .( i dont think im makin much sence to you let alone myself right now :) ) and she repeats all that in the evening . I try and give her the first lot before she goes to school , and in the evening we sit down and watch the telly while she does that lot then its coco pops and off to bed .
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