How many hours do you put into treatments and taking care of yourself?

LouLou

New member
A lot! Raw treatments alone are 21 hrs. This does not include nor does your list include cleaning nebs, ordering meds, organizing meds, insurance phone calls, making appts, paying bills, picking up meds at pharmacy, meal preparations as well as shopping for high calorie diet....
<br />
<br />When I applied for SSDI in 2007 they wanted to know about my day this is how I responded:
<br />My Day
<br />7:00am wake up,
<br />
<br />On the way to the bathroom a coughing fit usually requires me to catch my breath and rest.
<br />
<br />7:00am - 7:15am - prepare a high caloric shake since many of my AM meds are to be taken with food yet eating a breakfast consisting of solids will result in vomiting during my AM physical therapy session.
<br />
<br />Take 6 pills.
<br />
<br />7:15am - 7:30am - assemble nebulizers and insert medication.
<br />
<br />7:30am - 7:50am - inhale albuterol (bronchial dilator) via nebulizer.
<br />
<br />7:50am - 8:35am - inhale hypertonic saline via nebulizer.
<br />
<br />Often times at this point I've coughed so much that I must change my underpants due to incontinence so I stop to get dressed for the day.
<br />
<br />8:35am - 8:50am - get dressed, brush hair.
<br />
<br />9:00am - 9:45am - Strap on The Vest for physical therapy to help loosen mucus in
<br />my lungs. The session stops every 5 minutes to allow me to cough and spit the loosened mucus.
<br />
<br />9:45am - 10:05am - inhale Pulmozyme via nebulizer.
<br />
<br />10:05am - 10:35am - inhale Tobi antibiotic via nebulizer.
<br />
<br />10:35am - prepare and eat breakfast of cereal with fruit and milk. Take pancreatic enzymes x3.
<br />
<br />10:45am - Inhale Advair steroid, wash mouth out to prevent oral thrush (yeast
<br />infection). Brush teeth.
<br />
<br />11:00am - 11:40am (Cleaning process takes 15 minutes of my active participation)
<br />
<br />Disassemble all 4 used nebulizers. Clean nebulizers using warm soapy water then sterilize them by leaving them in a bath of hydrogen peroxide for 30 minutes. Create sterile water by boiling for 15 minutes.
<br />
<br />Put a load of laundry in the washer.
<br />
<br />Drain hydrogen peroxide and rinse parts with sterile water. Put parts aside for use when they are dry.
<br />
<br />11:45am - 12:30pm - place phone calls regarding scheduling medical appointments, paying medical bills or clearing up health insurance coverage issues.
<br />
<br />12:30pm - 1:00pm - prepare and eat lunch consisting of leftover's, a sandwich or a frozen entrée. Take pancreatic enzymes x 3 and noon pills (4 total)
<br />
<br />1:00pm - 1:15pm - clean breakfast and lunch dishes.
<br />
<br />1:30pm -3:30pm - nap
<br />
<br />3:30pm - eat a snack (yogurt or granola bar)
<br />
<br />3:45pm - 4:15pm - Exercise lungs using Acapella handheld device to help loosen mucus in my lungs.
<br />
<br />4:00pm - 5:00pm - Run an errand in the car (such as go to pharmacy to pick up prescriptions, make a deposit at the bank, etc.)
<br />
<br />5:15pm - Husband and son return home from work/daycare. I watch son while husband prepares dinner.
<br />
<br />6:00pm - Eat dinner with pancreatic enzymes x 3 and evening pills (4 total)
<br />7:00pm - Put son to bed.
<br />
<br />8:00pm -8:15pm - assemble nebulizers and insert medication.
<br />
<br />8:15pm - 8:35pm - inhale albuterol (bronchial dilator) via nebulizer.
<br />
<br />8:35pm - 9:20pm - inhale hypertonic saline via nebulizer.
<br />
<br />Often times at this point I've coughed so much that I must change my underpants due to incontinence so I stop to get dressed for the night.
<br />
<br />9:30pm - 10:15pm - Strap on The Vest for physical therapy to help loosen mucus in my lungs. The session stops every 5 minutes to allow me to cough and spit the loosened mucus.
<br />
<br />10:15pm - 10:45pm - inhale Tobi antibiotic via nebulizer.
<br />
<br />10:45 - eat a quick snack, take bedtime pills (4 total) and brush teeth.
<br />
<br />11:00pm - go to bed.
<br />
<br />3:00am - coughing attack wakes me.
 

LouLou

New member
And here's a graphical representation that was presented at conference based on my day.
Kind of puts it into perspective - it's a miracle I accomplish anything else :) I look at this when I'm having a bad day and realize I do damn good for myself.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=57635&catid=175">http://blogs.cysticfibrosis.co...readid=57635&catid=175</a>
 

LouLou

New member
And here's a graphical representation that was presented at conference based on my day.
Kind of puts it into perspective - it's a miracle I accomplish anything else :) I look at this when I'm having a bad day and realize I do damn good for myself.
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=57635&catid=175">http://blogs.cysticfibrosis.co...readid=57635&catid=175</a>
 

LouLou

New member
And here's a graphical representation that was presented at conference based on my day.
<br />Kind of puts it into perspective - it's a miracle I accomplish anything else :) I look at this when I'm having a bad day and realize I do damn good for myself.
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=57635&catid=175">http://blogs.cysticfibrosis.co...readid=57635&catid=175</a>
 

KingJames

Member
If I really rush it, 30-40 minutes maximum (Daily). I do two nebulizers a day, before I go out if possible (First the Albuterol/Cromolyn, then the DNase (Back-to-back))), and that's it. I take Creon as necessary, but sometimes I've found that I can actually get by without it. I still take it on a normal basis just to prevent any possible stomach aches, though (Greasy food doesn't always agree with me). Zithromax is a daily pill (I usually take it in the evening), and if need be I take an Allegra during the day (Seasonal allergies). I take a Ranitidine every morning, although I've made do without it when necessary. Vitamins are optional too, and over the counter. I have a vest, but since I've been running and working out a lot, I haven't needed it (Except when I get really sick from a virus or bacterial infections, it helps out).

Btw, I'm not much of a morning person, and when I was still in high school, I had to literally drag myself out of bed some mornings (I even had water poured on my face a few times LOL :p ). The nebulizer time, sometimes would frustrate me in having to get up earlier for it.

Oh, and I also have a huge appetite, HA! I had 12 blueberry pancakes and about a half-dozen pieces of bacon for breakfast this past Tuesday, then I had potatoes, salad, and a roast for dinner that evening. For desert I had a full coffee cup of Rocky Road. I always end up being the last person left at the table, and I get mugged by the dogs for food lol. It takes me a while to eat all of my food, and I joke with my family that if I ever get sent to Afghanistan, the village I'm in will probably have to search wide-and-far for enough livestock to feed me haha. I can make do with little food when absolutely called for, but I've found that I can consume what two or three average people would normally eat at any given time. I told my folks that if I didn't have CF, I'd probably weigh 300-400 lbs. right about now lol.
 

KingJames

Member
If I really rush it, 30-40 minutes maximum (Daily). I do two nebulizers a day, before I go out if possible (First the Albuterol/Cromolyn, then the DNase (Back-to-back))), and that's it. I take Creon as necessary, but sometimes I've found that I can actually get by without it. I still take it on a normal basis just to prevent any possible stomach aches, though (Greasy food doesn't always agree with me). Zithromax is a daily pill (I usually take it in the evening), and if need be I take an Allegra during the day (Seasonal allergies). I take a Ranitidine every morning, although I've made do without it when necessary. Vitamins are optional too, and over the counter. I have a vest, but since I've been running and working out a lot, I haven't needed it (Except when I get really sick from a virus or bacterial infections, it helps out).

Btw, I'm not much of a morning person, and when I was still in high school, I had to literally drag myself out of bed some mornings (I even had water poured on my face a few times LOL :p ). The nebulizer time, sometimes would frustrate me in having to get up earlier for it.

Oh, and I also have a huge appetite, HA! I had 12 blueberry pancakes and about a half-dozen pieces of bacon for breakfast this past Tuesday, then I had potatoes, salad, and a roast for dinner that evening. For desert I had a full coffee cup of Rocky Road. I always end up being the last person left at the table, and I get mugged by the dogs for food lol. It takes me a while to eat all of my food, and I joke with my family that if I ever get sent to Afghanistan, the village I'm in will probably have to search wide-and-far for enough livestock to feed me haha. I can make do with little food when absolutely called for, but I've found that I can consume what two or three average people would normally eat at any given time. I told my folks that if I didn't have CF, I'd probably weigh 300-400 lbs. right about now lol.
 

KingJames

Member
If I really rush it, 30-40 minutes maximum (Daily). I do two nebulizers a day, before I go out if possible (First the Albuterol/Cromolyn, then the DNase (Back-to-back))), and that's it. I take Creon as necessary, but sometimes I've found that I can actually get by without it. I still take it on a normal basis just to prevent any possible stomach aches, though (Greasy food doesn't always agree with me). Zithromax is a daily pill (I usually take it in the evening), and if need be I take an Allegra during the day (Seasonal allergies). I take a Ranitidine every morning, although I've made do without it when necessary. Vitamins are optional too, and over the counter. I have a vest, but since I've been running and working out a lot, I haven't needed it (Except when I get really sick from a virus or bacterial infections, it helps out).
<br />
<br />Btw, I'm not much of a morning person, and when I was still in high school, I had to literally drag myself out of bed some mornings (I even had water poured on my face a few times LOL :p ). The nebulizer time, sometimes would frustrate me in having to get up earlier for it.
<br />
<br />Oh, and I also have a huge appetite, HA! I had 12 blueberry pancakes and about a half-dozen pieces of bacon for breakfast this past Tuesday, then I had potatoes, salad, and a roast for dinner that evening. For desert I had a full coffee cup of Rocky Road. I always end up being the last person left at the table, and I get mugged by the dogs for food lol. It takes me a while to eat all of my food, and I joke with my family that if I ever get sent to Afghanistan, the village I'm in will probably have to search wide-and-far for enough livestock to feed me haha. I can make do with little food when absolutely called for, but I've found that I can consume what two or three average people would normally eat at any given time. I told my folks that if I didn't have CF, I'd probably weigh 300-400 lbs. right about now lol.
 
Top