keeping on top of meds

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bethylove

Guest
How do you keep ontop of reordering all your meds?

How do stay compliant? I have a hard time believing anyone is 100% compliant. And for those of you who claim you are- do you work? How do you schedule it around your working time and still have a "life?"

Thanks
 

JENNYC

New member
I see that you have G551D and was just wondering if you are on Kalydeco? I have heard that some are getting on Kalydeco and getting to slowly wean off of a few meds. That might help ease a little time off of your treatments. As far as reordering we use CF Services Pharmacy, which is convenient in that we just call it in when we start running low and you can use there automated system no matter what time of the day it is. Also I try to order all of her meds at the same time so I don't forget any. That helps us out a lot. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Ratatosk

Administrator
Staff member
I have a cupboard just for DS' meds. If I'm down to one box of albuterol or atrovent, I email the pharmacy. With his daily meds -- I have them in a pill container for the week, so last night I noticed a week from today, he'll be out of Actigall, so I emailed the pharmacist. If they can mail it to us, I'll get it the next day otherwise they deliver it to us before the weekend. Our pharmacy is a cousin, who lives about an hour from us; however, they get to town at least once a week so they drop it off.

Prior to using the pharmacy we use now, I would just call in to the pharmacy, punch in the prescription number and it would be ready for me the next day.
 

Kristen

New member
Most of my meds come in a three month supply through a mail order pharmacy, and I order them all at the same time, so that helps. The two that don't (pulmo and Cayston), I have to order through a specialty pharmacy and I mark it on my calendar.

As far as staying compliant, I am not 100% compliant because I don't do much chest PT (because I don't notice it helps and I exercise instead). But I do take all of my nebs. When I worked, I did them in the car on the way to/from work, or while doing my hair, or while cleaning the kitchen. If we go to a friend's house, I bring my neds with me and do them there. It's a huge pain, but I also haven't found it too hard to get them - EXCEPT when we have to catch an early morning flight. When I have to get up at 3:30 AM to catch a flight, I don't do my nebs that morning (unless I'm on Cayston, I never skip that).
 

beautifulsoul

Super Moderator
As far as organizing and remembering to take meds....I have a weekly pill container I fill up at the beginning of each week. I keep a note of which meds need to be refilled that day/week and e-mail my nurse when there are no refills remaining. ...Like Liza, I have an entire cupboard filled with my meds and other medical supplies.

Some of my meds are in liquid form which makes it harder to remember since they obviously can't be stored in the pill container. I set my cell phone alarm for when I take Bactrim because the dose is only MON, WED, & FRI.

It's overwhelming sometimes with scheduling appointments, ordering feeding tube supplies, ordering insulin pump supplies & checking for med refills. I'm thankful for my dad and grandma. They help me with some of this.
 

mamerth

New member
For super important meds that are time sensitive I set an alarm on my cell phone (my serevent is one of them).

Ordering med is harder to remember. I have a medicine room (an unused bathroom) and I keep most everything in there and check my supplies every so often. I also set an alarm on my phone and ICal to remind me to order my monthly meds. My hubby tries to get me extra diabetic supplies so that I hopefully never run out. Every month when I order drugs he picks more supplies as I need them. Wish they were at the same location.

Having two cupboard in the bathroom to put all of my medicines in and medical supplies helps greatly. I only keep one bottle of Zenpep and Advil in the kitchen. I have pics of my "medicine bathroom" on my blog. I just got my monthly supply of new drugs.... time to restock my cupboards. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Ratatosk

Administrator
Staff member
I should add, too that with the exception of Tobi and Pulmozyme, which I have to order each month, the rest of DS' meds are ordered for 3 months at a time.
 
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TonyaH

Guest
For the first time in Andrew's life I can say we are beginning to struggle with this. Unfortunately, it comes at the time when I am starting to help Andrew gain independence in calling in refills and keeping up with his own stock.
My biggest frustration comes from my mail order pharmacy. We ordered enzymes and prevacid two weeks ago and still don't have it. It takes forever!
We have also been switching Andrew's meds around quite a bit lately, so I have some at our local CVS that haven't gone maintenance yet, some through regular mail order, and some through specialty mail order. It is a lot to keep up with. Add to that hospitalizations when you use hospital supply for some of your meds and home supply for others, and your reorder schedule gets completely messed up.
I have been thinking about purchasing a weekly pill case...silly question, where do you find one big enough to fit the number of pills CFers need each day? Enzymes are space consuming enough without adding in all the others!
 

Ratatosk

Administrator
Staff member
I don't include enzymes in the pill case because DS is a snacker, so never quite sure how many he'll need each day. Nor to I put his vitamin in there 'cuz it's too big.

This is the one I use from the container store http://www.containerstore.com/shop/bath/medicationStorage?productId=10026874&N=71798
 

Jana

New member
As others mentioned, I have most of my meds together. My pills/inhalers are in a cabinet in the kitchen, and my apartment has a bar which is very convenient for a medical station since I don't drink. I have a little fridge back there, cabinets for my supplies of meds (as others mentioned, most of mine come in at least a month to three month supplies), and a counter for vest, nebulizer, sterilizer, and so forth.

When I take out the last inhaler or the last bottle of pills from my medical area, I put the empty box on my desk by my computer. With pills that just come in one large bottle (such as actigall), I pull it out of the kitchen cabinet and place it on my computer desk when it gets to a certain level. My meds are all ordered online (I'm with Kaiser) and are all mailed to me except for the refrigerated ones. Those I order online and have to go pick up at the Kaiser pharmacy. So, if I don't have time to re-order at that moment, I remember to do it when I see the empty bottles or boxes on my computer desk.

As far as compliance, I work full time as a teacher and also teach piano lessons after school, so really full time plus a little. Still, I am 100% compliant with meds and vest. One thing that really helps me is that my medical area also has a mirror and outlets, so I keep all of my hair and make-up stuff in the cabinets by my medicine and get ready in the morning while doing nebs and vesting. I also often grade papers on the bar during my evening treatments. As someone else mentioned, if I have to, I do nebs in the car or sometimes even after school at my desk. Recently, I flew to Indonesia and missed several treatments because of the loooong flight. I never skip treatments, so it felt scandalous, though, I must admit, also somewhat liberating =)

The one area where I struggle is exercise. I'm too exhausted by evening to do it, so the only way to get it done consistently is to get up early enough to do it in the morning. That's a tough one for me. At times, I walk a few miles on the treadmill every morning for months. Usually what messes me up is getting sick. Then I simply can't get up to do it in the morning and have enough energy to make it through the day, so I get out of the routine. Once off, I never seem to be disciplined to get right back to it, so there are major gaps in my exercise program.

I think the key to the whole thing is the determination to get it done. What made me become compliant was when I began to comprehend how it affects my quality of life. Yes, it's inconvenient and means I have to make choices. Yes, in the end it doesn't make sickness go away anyway. However, it does make a huge difference to my quality of life and is really the only power I have to control the state of my health to any degree. I've been told by nurses that they can generally tell right away when cf patients come in whether or not they're compliant--it makes that much difference.

So, I would say, it's a matter of choice. Can it be done? Absolutely. Is there a price to pay in order to achieve it? Absolutely. Certainly there are ways to make it work better with your life, but ultimately you have to ask yourself the question of whether it is important enough to you to make it happen. Years ago I made the choice that it is, and from a long term perspective, I don't regret that decision at all!

Sorry this is so long--hope it helps!
 

GrandmomBEV

New member
This is a hrad one for me to get into , but I do know how many feel. My granddaugther has Cf asmost of you know & she is near me & works with me. i have the CF Pharmacy in Florida. We started it because of her 27 years ago . I have gone thru so many stages trying to get plans, routine, containers, etc to help .It isnt easy for anyone. we sent our a questionaire a few years ago & we were told taht having a set time each month , to be called & verify all or which of the meds are needed-wanted to be sent, & then we send that day or next. Some have to be careful as Medicaids & insurance companies wont let you or early in a month ,& other things like that. Getting refills renewed by the clinic/doctors is another hold up .So its best for the patient to be sure at clinics that the doc/Rn put refills for at least 3-6 months.We call the docs at the filling of the last refill. COLD-freezer/refri items are not sent out on Fridays unless overnigthed for meds proctection. refill ORDERS can be sent on line on ourweb site too.
For my own , I do as many say. I fill a container on Sunday evening for the week ahead. That way I will know when I would be using the last so can get myrefills before that.
I love all the ideas you have given. I think I will try to get a suggested ./ideas & print for a handout at our CF ED day for our support group & families here in Orlando.send me any other ideas . Thanks This a great site
Love & hugs, GrandmoMBEV
 
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