Your Routine

[anonymous]

Hey Guys
Im a med student from the UK and i'm currently studying CF and have to write a report on how how CF affects a persons life and family and there's only so much you can get from a text book so I would be really grateful if you guys could give me some "inside" info. Just a quick account of your daily routine and how you and your family feel about the conditions, how you motivate yourself and support availabe to you.

Many thanks

 

[julie]

If you use the search feature and use words like research project, CF routine, doing a paper, you will find about 25 other topics where people have listed daily CF activities. I would recommend you check those things out first, and then come back with questions from reading that information.

 

[anonymous]

I dont mean to be awkward but was hoping to keep all the responses in the one place. It would make it alot easier for me, I know it might get bit repeative for some of you but it would really help me out.

Thanks
Med Student from Belfast (N.I.)

 

[Kay]

I will help you out, my routine may not be as intricate as some but I hope it helps. Research papers are not fun and I know finding information can be even harder.

I am 21 a senior in college (living there)

Morning~ Check blood sugars, take nebulizer treatment and morning medicines (if you need those let me know) also as meaningless as this seems to some people I HAVE to eat breakfast to maintain stable blood sugars and administer inlulin and also due to the fact that I have lost a significant amount of weight the last few months. Also 2 hours after eating sugar levels must be checked again.

Afternoon~ Chest Physical Therapy, nebulizer treatment, check sugars before lunch, eat lunch and administer insulin based on how many carbs were eaten, and then check sugars again 2 hours after eating.

Evening~ Check blood sugar levels again before dinner and then 2 hours after and administer insulin as needed. Take my night medication (again if you need all let me know), and nebulizer treatment.

This is just a broad summary...if you need medications or anything let me know I am happy to help you out.

*Every week I have to make sure my pill box is full with the correct medication-this makes it easier to take medication and know you are taking the correct ones. I also have to take an enzyme every time I eat.*

 

[JustDucky]

You will definitely see variations here....I guess it depends on what is going on with that particular person. So....in light of that, here is my routine:

Early AM: Take my nebs, sometimes it is Xopenex alone then chest PT with the Vest system. If I happen to be on TOBI, I take that after my chest PT
Then it is off to take my meds...I take Pancrease MT 20 prior to any food with fat, eat my breakfast. I don't have any insulin issues, but they are monitored.
Around noonish, more meds and then lunch
Dinnertime at 6'ish and more meds
Nebs and chest PT all over again.
Nightime meds and then hopefully I am in la la land

I also have muscular dystrophy and live on a vent, so the routine is a little different as far as physical therapy and occupational therapy goes. I also use a wheelchair, I can still "toddle" a little bit, but tire easily. Showering is interesting. But...I do what I can to keep myself in as good as condition I can be in. The above does not include when I am on antibioitics, IV's at home...the routine changes a bit then depending on what the schedule is. I actually set my alarm for night infusions via my port. All just part of the routine LOL! I do get out, but with plannning...I don't like to consiider myself totally homebound, any chance I get and my health is permitting as well as the weather, I go in my chair, into my van and out. I hope I have helped you...Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

here is my routine; again, another variation. Mine varies day to day.

Morning; some kind of physical therapy, either Chest PT or the vest; take medicine and vitamins, eat breakfast, and, as of late a gigantic shake to gain weight. Then I do albuteral inhalor and inhaled cephtaz neb. Chest pt + neb can take anywhere from 1/2 and hour to an hour depending on how much time i spend on chest pt

Late afternoon- sometimes do an extra chest pt, if I am planning on going out later, etc...want to feel good...otherwise i wait until the evening

Evening/Night- try to do some more physical therapy/chest pt of some kind. Drink a nightime shake; albuteral and cephtaz neb. The cephtaz helps with airway clearance so sometimes less chest pt is needed depending on the day.

I take enzymes with all food, and the course of my day is also of course, spent eating things other than shakes. Mostly healthy food. I do not have blood sugar problems (knock wood) I go to school full time and live on my own in an apartment with my dog Henry and a boyfriend who is there a lot. My family lives half an hour away and I go home alot to get treatments from my mom, like on sundays, etc. and eat there. I used to have a part time job but quit because this semester I had to focus on school.

With the nebs and the chest pt i like to give myself two hours between waking up and being out the door, simply so i dont have to rush...but i can do it all and be showered and ready in an hour if I must!

-hope this helps, and again, you will see SO much variation. Even this routine is way different from my own one year ago, which was different from 3 years ago, 5, 10 15 years ago...you get the picture. Its always changing.

I have b.cepacia too, which is why i do the inhaled cephtaz

Caitlin

 

[anonymous]

Thanks Guys its been a REAL help!!

 

[anonymous]

Hey Kay
Hows your routine fit in with going to college. I'm a fresher and its been really hard going (although some of my room mates find it easier going). How does your family feel about you staying at college, cos i know there are some adults who still live with their parents due to the severity of their condition. Do you suffer from delta F508? If you wouldnt mind could you give just a small paragraph on how college was at the start!!

Thanks
Ciaran (med student)

 

[Kay]

Hi Ciaran

Any info you need I am glad to share. I do have Delta F508.

My first year at school wasn't all that bad (actually it was my easiest year with CF). I decided to go to a small school close to home...that for me was huge so I could deal with going to school. I think that made it easier on my parents, they were all for me living at school. I have 3 older brothers and an older sister and they all got to live away at school so it was only fair. I am not in such a serious situation that I can't live away from home so they weren't too worried...they only worried that I wouldn't let them know when I was feeling sick. I got roomed with someone I didn't know, so telling them was probably one of the hardest things I had to deal with, but come to find out she knew a little bit about CF and was really cool about everything. She actually made sure I took my meds and was facinated by therapy so she always stuck around for that. The only tough thing about school that year was my classes, health wise I was still doing well. I did the total normal college thing, went to parties and hung out with friends it was like I was pretty normal for once.

If you really want to know it was my soph. and jr. year that were the toughest. I found out that I had cepcia and since then my health has been on a steady decline from previous years. I ended up commuting to school for the next 2 years and I still ended up in the hospital more than my usual routine. I usually only go in twice a year, Christmas break and then again over my summer break, but I have actually been in for a clean out 4 times this year. I know for some that isn't a lot but when you are used to going in once or twice a year it is a HUGE shock and something that can really bring your spirits down. My PFT's just never came back up and my doctor kept putting me on more medications so my daily routine became more complex and harder to fit in extra things I wanted to do into it. I still stayed up at school on the weekends and actually ended up joining a sorority on campus. I tried to do everything I would do if I lived on campus, I just had to be sure that I was home for Chest PT and home to take meds.

This year being back on campus hasn't been so bad, my physical therapist still sees me at school, I joined a volleyball league with my brother that meets once a week for like 4-5 hours. I am still taking on a full course load at school which isn't that easy since I am a Bioloby major and that is some major work! I live with my freshman roommate and 2 other girls, so it is tons of fun. I don't have the cleanest of living situations so some medical issues have come up like my IGE level sky rocketed, and as I said I just recently have been diagnosed with CFRD, and I have lost tons of weight (over 20 pounds). However I have lots of people looking out for me. It seems like I have too many moms on campus, it can get kind of scary. I feel more normal this year now that I get to live on campus and I can manage all my meds and stuff by myself...hopefully this will prepare me if and when I move out on my own. You probably don't care to hear this but I also have a boyfriend who has been nothing short of amazing. We have been together a little over a year and a half and I can't believe how much he is there for me. He comes to appointments, visits me in the hospital, and is the first one to know when I am getting sick. He is my parent's spy, he tells them when I am getting sick and thinks I should see my doc (I am super stubborn and need someone like this around).

Ok now that I have gone on for more than a short paragraph that you wanted and probably about nothing you wanted to know. If you need anything else just let me know. Hope this helps and didn't bore you too much!

Kay


Hey Kay
Hows your routine fit in with going to college. I'm a fresher and its been really hard going (although some of my room mates find it easier going). How does your family feel about you staying at college, cos i know there are some adults who still live with their parents due to the severity of their condition. Do you suffer from delta F508? If you wouldnt mind could you give just a small paragraph on how college was at the start!!

 

[anonymous]

Thanks to all you guys, I really appreciate for the time you've taken to talk to me about CF. I have more than enough info here to write my report.

Hope all goes well in the future.
Thanks again
Ciaran