Tuesday, July 6, 2010

The Other Side by DH

One of the things that Tiffany and I have worked hard at with CF is to be as independent as possible so that we can lead a life that is not constantly interrupted by health care personnel.  That gives us more control over our everyday life and schedule and also protects Tiffany from being exposed to the many bugs that health care providers carry around from other patients that they see.  Therefore we almost always do I.V.s at home and not in the hospital. Over the years we have learned a couple things about I.V.s -- in this post I want to share how we organize our I.V.  life.

  1. Remember that it is your life and your schedule - take the time to figure out a schedule that will be convenient for you to get healthy the quickest.  The biggest consideration of this is what time will you do your I.V.s.  Depending on what cocktail of drugs you are on you usually are either doing drugs every 8 or every 12 hours.  Every 12 hours is much more preferable as it gives you more sleep time, but sometimes you need the every 8 because of the type of drug or because the dr. wants to do more of a specific drug.  We have found with Vanco that smaller doses more often get good results.  If we are doing every 12 we will usually do it on 9 a.m. and 9 p.m. which allows you to sleep in a little and allows you get your evening duties in such as dinner before you start at night.  The other consideration is that it gives a good morning time for nurses to come by if you have to do blood draws. It is no fun to have visitors in your home too early in the morning or too late at night. If we are doing every 8 hours then we usually go with a 6 a.m., 2p.m., 10 p.m. The afternoon time is good for any medical visitors and then the early morning start allows Tiffany to sleep through the meds and I change everything out for her.  It also gives us the option of doing the evening dose (or part of it) in bed.  
  2. The other thing to remember in your schedule is what we like to call hospital time.  The basic rule that I understand the medical profession to follow is that doses must be given within 1 hour of the specified time.  So what we do many times is that we will move that morning does back an hour  so that Tiffany gets an extra hour of sleep (or that I get an extra hour of sleep).
  3. Schedule in all of your other meds as well that you are doing orally.  Some have to be done with meals others may be affected by your IV drugs.  For example, Tiffany takes Bio K which is a probiotic to get the good bacteria back in her -- one serving is almost like eating a thousand yogurts.  Anyway, she normally drinks this right before bed but when when she is on I.V.s we don’t do it then because doing it during the IV or right after the IV basically kills all the little bacteria immediately which makes it of no effect.  So Tiffany takes it at a different time when it will have a greater chance to be effective.  
  4. Schedule eating time and exercise -- this is the one we don’t do very well on, but it is also very important.  When you are at the hospital they just brink you the food and you eat without thinking about it.  At home, you have to take the time to make your meal and eat.  If you don’t do it in a schedule, you will find yourself skipping meals and not getting the nutrition that is needed on a regular basis.  Exercise is the same way -- if it isn’t planned it won’t get done, and many times doesn’t get done when it is planned.  
  5. Schedule breathings and poundings. It is best to schedule these while she is doing the IV. it will help you take advantage of the time better because of how much time the IVs do take. We attempt to do the CPT (pounding) at the end of her IV doses.
  6. Once you have your schedule, write it out. We don’t always do this but when we do it is very helpful for me because I have a tendency to forget some of the things that should be done, and when someone is on IVs they usually aren’t feeling very well and don’t remember everything either.  I don’t know what my excuse is for not remembering.  

OK - this post is much longer than I anticipated and I am not even close to being done.  We will have to split up the organization according to different categories so we can get it all here.  So I guess this part one of I.V. organization -- make a schedule and good luck at keeping it!

2 Response to The Other Side by DH

July 15, 2010 at 7:16 PM

I'm not familiar with the BioK...sounds like a GOOD addition to the CF regimen.

July 15, 2010 at 11:38 PM

It is great...definitely a lifesaver when on so many maintenance meds. I can find it at our Whole Foods.