I read the news today, oh boy

I think that probably 90% of my blog readership is from other cystics. But, I know there are a few friends who have stumbled upon it and I get tons of people from various foreign countries who pass through when my blog is the "next blog" on the blogger reader list (or however that works?) - so, in light on what I've seen on some other people's blogs, because it is Cystic Fibrosis Awareness month, AND because my husband and I are TOYING around with the idea of SSDI (more on that later), I thought I would present my CF day. It is not as rigorous as a lot of folks out there, but certainly my time is compromised by el diseaso.

Here is a weekday schedule:


take azithromycin (MWF) prophylactic


Vest. 20 minutes with simlutaneous nebulized hypertonic saline and albuterol. Generally the nebs take longer than the Vest and so this routine takes about 30 min.

Treadmill. I run apprx 20-25 min, somewhere between 1 -1.5 miles. On a good day I run the whole time and cough minimally. On a bad day I run/walk, and cough so much I have to hold my crotch so I don't pee my pants when I cough but I usually do anyway and this is why I do not run in a gym. I run 3x/week.

inhaled colsitn in the eflow nebulizer. This thing is supposed to be fast, but mine for some reason isn't, so this takes about 15 minutes to inhale (while holding the handset which means if I do anything, I do it one handed)

after this it is important to immediately clean the elfow parts. I do this in two steps, first the metal head piece, then the plastic parts.

lastly I inhale my advair, 50/500 - sometimes I do this before the colistin, but a lot of times I forget.

eat. I take 4-6 Creon per meal to help with digestion and absorption of my food. I also take 2 ADEK vitamins and one Vitamin D with calcium. Due to osteopoenia I am on 2800 IU of vitamin D/ day. We hope this will work to raise my vitmin levels and keep further bone weakening at bay.

Saline nasal wash with my neti pot. I use Neil med packets if I have them or just regular old sea salt (from my friendly natural grocery store).

squirt of Omnicef into the schanz to help keep sinuses open.

now it is somewhere around ten. If I need to shower, I do it, otherwise I get dressed and then gets all kids I have ready and my day has begun! I am pretty free to do what I want unless I have some sort of doctor appointment (CF clinic, ENT, rheumatologist, etc).

The only real reminders of CF throughout the day at this point are my cough and the enzymes I take EVERY SINGLE TIME I EAT!

After dinner and kids go to bed, routine starts up again:

vest/hypersal/albuterol - 30 minutes
eflow colsitin and cleaning routine
inhaled advair 500/50

this is the part where I should tell you I boil my nebs everyday, but the truth is I don't. But today I will - so add another 20 min or so for boiling nebs.

If I think I am getting sick I will do another nasal wash before bed.

other randomly added meds that i use when need be and can, in some way, be related to CF:

ativan
ambien
advil
narcotic pain killers
mucinex
zantac/tums
miralax
metamucil
acidophilous


None of this includes what I do if I am sick - this is a healthy day at 70% lung function. No, it isn't horrible, but it is demanding. It does require some discipline to do treatments (and exercize) when I REALLY don't want to.