Saturday, April 26, 2014

How Meds Fit Into My Day.

 COMPLIANCE:

This is a huge topic in the CF community. Lots of people (including myself) keep track of how long they have been 100% compliant (days without skipping a single pill, treatment or vest). Its such a difficult topic. Lots of studies have been done showing low numbers for compliance. I just read one the other day that a fellow CFers posted on Facebook and it got me thinking about how difficult compiance is for me. And I bet there are other CFers are there with just as difficult situations too. I'm going to give my two sense about the whole topic! A lot goes into doing meds, my daily routine, etc, so I'll fill you in.

Compliance: is it important?  Why Keep Track?
Um, yes. Of course it is. You are prescribed those meds
and nebulizers for a reason. Try to find something to help keep you on track. I now for lots of people this is keeping record of how many days in a row they have been compliant. I know I keep track as motivation to get me to do all of my meds. It gives me another goal to work towards. It would be really neat to say I've been 100% compliant for a whole year (and that is great not to miss the meds). So if a secondary motivation helps, then do it! Keep track! It's something to be proud of too. It means you take care of yourself, your health is imporant, and you don't put it on the back burner.

Now, let's make it personal...
yeah, its sad to not be compliant and bad to miss treatments and meds. But people forget pills or meds sometimes while traveling, or the pharmacy doesn't get it refilled in time. For me there are some obstacles that happen that get in the way of my being 100% compliant that I can't always help.

1. Traveling. My vest weighs more than me (Its an old, huge hunk of a model). I can't take it with me everytime I go to visit my parents for a weekend). I do try to do CPT or something though.

2. The pharmacy and insurance. My insurance is touchy sometimes, but they pay it. But, I have to wait until practically the day before my med runs out before they refill and they don't allow automatic refills. I have over 20 prescriptions. If a refill runs out and I don't realize it before I call to refill. It can 2 days to get a new script sent and filled. And depending on my hours working, or if I'm gone for the weekend. I can miss getting the meds. 

3. Accidentally sleeping in (oops, no time for meds before work now).

4. Working late ( I have no control when I get to leave work). If payroll says we are busy enough I have to stay, then I have to stay, even if not scheduled.

5. If I get off work at 11pm or midnight and I went into work before 5pm. I still have to do night meds before I go to sleep. Some people can do hypertonic and can go to sleep afterwards. I cannot. I need to give myself an hour after doing it so that I can fall asleep and not stay up all night coughing. Which means doing nights meds as late as 1-2am.


I'm not compaining, I'm just trying to explain to everyone that not every CFer's situation is the same and research doesn't explain that part.

 The number of treatments a patient does, the type of job they have, distance commuting from work, etc.. These all play a major role in compliance. And I think studies, clinics, docs, etc need to take this into consideration. Yrah, I've never been 100% for a year, but I do as many as I can. I don't just choose not to do them.

For example: My Life:
  I do at least 9 breathing treatments a day and thats when I'm healthy. I've talked to Doc about the number and to be honest the lil puffer (inhalers) don't get far enough into my lungs, so 9 treatments on Cayston Months and 8 on Tobi months. 4 in the morning, 3 at night, and depending on the month 1 or 2 in the afternoon. I do half hour of vest with my morn nebs and try to have Andrew do Manual CPT at night sometimes when he gets off from work at 11pm (cuz vest doesnt work as well for me). I've been complaint 100% since November (for a clinical trial I'm in). And not gonna lie its really hard.

My life is wake up 6am , eat, nebs,get ready, leave house by 8am, work 9am-6pm, get home by 7pm, nebs, eat. wait the 4 hours to do next set of nebs at 11pm, sleep 12 am to 6am, repeat (and be dead tired only sleeping 6 hours)

Once this trial is over, I'll try to keep up with it, but if I have to miss my 3rd albuteral or 2nd hypertonic (late night meds) in order to get more sleep I will.

When I'm on Tobi months and don't have an antibiotic in the "afternoon" (or 6pm for me). I skip my afternoon albuteral too. So I can do my night meds that month earlier and sleep more that month. That way I don't have to wait the 4 hours and do the night meds at 11pm. I can do them at 7pm and get a good night's sleep. Also where I work we work random hours. It could be 9am-6pm, or noon- 9pm, or 3pm- midnight. Sometimes having a mix-up, changing schedule makes it difficult too. Where I work, we don't get "actual breaks" because we only have one person in the video store working at a time, so we aren't allowed to leave the counter. We can eat at the front counter, but I can't do my meds I have trouble eating at work too. Most people just nibble on snacks throughout, but I don't have time to take a few pills every time I want a bite and I don't get a chunk of time somedays in order to eat my meal all at once.. I'm not complaining, I have been trying to make it work and I don't mind it being tough for now. Since (once school is done) I'll have a better /steady hours type job/career- yay!! I'll probably stay with Family Video even then, but only work 2 (4 hours) shifts a week. But my main career/job will make my doing meds so much easier!

Doing meds is very important and I wish I was always 100%, but I'm just being honest that is too tough sometimes. Main point is to not get upset about it, you can't control everything. I try not to be too hard on myself about missing meds. But it's tough, when you see so many other CFers that are 100% compliant, it makes me wonder if I'm not trying hard enough. Do you wonder if you're doing enough to get meds done? Well, if you are doing everything possible, but sometimes it still doesn't work out. CF can make my life a little more challenging, but I just try to make mornings and evening routines and keep everything as organized as possible. It makes it a little easier with compliance. And just give it your best. Start your goal small: one week, one month, 6 months, 1 year!!! If I ever reach a full year I will throw the biggest party!!!! Whoot whoot!

So Bottom Line...




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