- 6:00am - Wake up (If I'm on my Tobi that month -which is another antibiotic neb- then I get up at 5:45am to each day to fit it into my routine.)
- 6:05 - 6:50 - Morning Treatments:
- 30 minutes of Vest (3-ten minute sessions)
- Albuterol nebulizer (~7-8 minutes)
- Hypertonic Saline neb (~10 minutes) -- Both nebs are done during the Vest time
- Clean Albuterol and HTS nebs
- TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
- 1 puff of Advair
- Clean TOBI neb
 |
| This is what I look like when I do my treatments. Nebs and Vest going at the same time. |
- 6:50 - Make lunch for the day
- 6:55 - Get dressed
- 7:10 - Take allergy medicine, Zithromycin (MWF anti-biotic), Zyrtec, and 4 enzymes then eat breakfast - which usually is a big bowl of cereal or oatmeal with a glass of milk.
- 7:20 - Take the rest of my vitamins (~4-6) I can't take my vitamins before I eat otherwise I'll get nauseous
 |
| This is approximately how many pills I take each day. The left hand has all of my vitamins, anti-biotics, allergy med, and Zyrtec. My right hand has about the amount of digestive enzymes I take in one day. |
- 7:25 - Brush teeth & hair, make sure I took all of my meds and did my Advair puff
- 7:30/7:35 - Leave for work - need to be there by 7:45
- 7:45-3:30 - WORK! (Mondays and Thursdays I stay later at work, so it pushes my evening stuff back)
- 4:00 - Come home, change clothes, wash hands, empty out lunch box, get PM nebs prepared
- 4:10 - 5:00 - PM treatments:
- 30 minutes of Vest (3-ten minute sessions)
- Albuterol neb (~7-8 minutes)
- Pulmozyme neb (~7-8 minutes) -- Both nebs are done during the Vest time
- Clean Albuterol and Pulmozyme nebs
- TOBI - if 'on' that month (different neb cup & machine - Add 10 min to routine)
- 1 puff of Advair
- Clean TOBI neb
 |
| A = Albuterol, P = Pulmozyme |
- 5:00 - 5:45 on Tuesdays and Thursdays: Go to the Gym for at least 30 minutes of exercise.
- 5:45 - EAT (but not without taking my enzymes first!) I eat lunch at 10:30am at work, so by the time I'm done with all of my treatments after work, I'm starving. On days that I go to the gym, I usually eat a granola bar before I go to give myself a little energy boost.
- Shower - I usually take my showers after dinner (or when I get back from the gym) because I don't want to wake up any earlier in the morning, especially on TOBI months - 5:45 is early enough!
I really have found that if I do my second round of treatments right when I get home from work, I rarely skip them. It also motivates me to get them out of the way at that time, so I can spend the rest of the night hanging out with Tim.
Speaking of Tim, I've been strongly hinting towards him to write a post on his own, of what it's like to live with a wife with CF, or anything really that he can think of. If you'd be interested in reading a post (or two, or three, or however many I can convince him to) written from his perspective, please vote on the top right-hand side of my blog. Maybe if he sees that other people want/care to read it, then he'll do it. If you also have something you'd be interested in reading from his perspective, please feel free to leave a comment on this post and I'll make sure to relay the message to him. Thanks!
It's 5:00 and it's Tuesday = Time to go to the gym! This is my fourth week going and I've been going twice each week, yay!
Hi Colleen-I was reading your daily schedule and just have to smile because it is exactly like mine. However, have you ever tried the Eflow Trio nebulizer? I use pulmozyme and TOBI with it and it takes a max of 5 minutes each and is silent. I absolutely love it and believe that it has saved my life in the mornings, as I am not a morning person. The only main difference is that you have to order a special compounded TOBI but for me the price was the same and the time saved is priceless.
ReplyDeleteGood luck with your routine, I just added an exercise portion to my routine and hate it but have not had a sick day yet this year.
Wow, I can't believe you do all of your treatments, plus cleaning the nebs in 50 minutes. My nebs take me at least an hour, especially TOBI and HTS...they are 20 min each, I cannot seem to cut down the time on those, no matter what cups or compressor I use! My treatments themsevles are an hour, plus I do 30 extra minutes of Manual CPT each day. I only wash my nebs every other day because I have 4 neb cups, so I don't have to do it as often =).
ReplyDeleteYou go girl! Proud you're working out!
I agree with laura, I am impressed you do your treatments so fast. Which compressor do you use?
ReplyDeleteYou look so cute in your little chair. I usually sit on the floor and use the couch as a backrest (random, I know) and look a hot mess with all my cups and meds on the coffee table next to me.
JWags - I do use the Eflow trio with my TOBI. I get the compounded version through Foundation Care every other month. I said about ten minutes because of the set up and cleaning along with the actual intake of the medicine. I absolutely love the Eflow and would recommend it to anyone!
ReplyDeleteLaura - I should have been clearer, when I said cleaning, I really just rinse them under hot water after treatments. I need to get better about sterilizing them more often because I know I don't do it enough - that's so time consuming because I have 3-4 neb cups each month depending if I'm on TOBI or not. HTS is my longest neb, but I'm getting used to it. I can usually fit an albuterol and HTS into my 30mins of Vest and still have 5-10 minutes with nothing. Thanks for the compliments! :)
Inhaling Hope - I use an Invacare Stratos Compact?? I don't know anything about it, but I really like it. I've had it for probably 4 or 5 years and never had a problem with it. I also use the PARI LC PLUS neb cups.
Usually I don't just sit in the middle of the room and do my treatments, haha. I usually sit at my desk in front of my computer, but my husband did a photography project on me and my CF, so that's where the black and white pictures came from.
Thanks everyone for the kind words and encouragement! And for the comments!
Now for those of you who voted 'yes' to the poll - what are some things you'd like to read about from Tim's perspective?
Thank you so much for sharing, and I LOVE the addition of the pictures! It is SO hard to get everything done in the morning before school. The days that I sub are a nightmare with treatments. I'm sure there are days where you don't feel like doing anything in the morning! Congratulations on your dedication and compliance! :)
ReplyDeleteI also can't wait to read Tim's post. I have no suggestions, but think it would be neat for him to include his FAVORITE thing about having a wife with CF. I think often times it's easy for us, having the disease, to focus on the negatives our significant others have to deal with. I'll be eagerly waiting :)
Thanks! It's usually harder to get out of bed in the morning than it is to do my treatments. It's become so routine for me that once I get out of bed, I go straight to fill up my nebs. My morning treatments seems to take much longer than my evening treatment, but I think part of that is because I'm still so tired.
ReplyDeleteTim has read everyone's questions and comments, so it's only just a matter of time before he posts. I'm going to quit bugging him and let him do it when he wants, so keep checking back. Thanks for commenting. :-)