The Other Side by DH (organization-part 4)

Here are a couple points for making life on IVs easier.

1. Become as independent as you can from the home health care company.  I learned to access and de-access Tiffany’s port early on.  In fact Tiffany de-access’ her port by herself often and has even accessed it by herself once -- she is pretty brave! This allows you to be on your own schedule and not theirs and also keeps bugs from other people away from your port.
2. Organize your supplies -- see previous post -- trust me this really does help in making life easier but it also gets it out of your living space so your house doesn’t look like a hospital.
3. Get a basket that fits on the base of your pump pole wheels.  I stock this from my organized supply and since we put it on the base of the pole, it is always there with whatever is needed.  I usually have to stock it every other day for some things and only once a week for others.  See the picture below. A longer, skinnier basket works well that sits right on top of the wheels of the pole base. In the basket we place the heprin, saline, tube caps, alcohol wipes, hand sanitizer. the caps, wipes, and sanitizer we put in a little box on one end and then the syringes we put in going different directions to make it easy to keep them separate.  You will always go through more saline then heprin.
4. Get a good pump and learn how to use it without help. We do every medication through the pump even when it is not required.  This is especially important to us when Tiffany is doing them alone.  It gives you much more control especially if you have reactions to the drugs. For example, Vanco is not a very nice drug and Tiffany cannot run it at the speed for which it is prescribed.  We have to slow it way down in order for her not to get Redman’s. No matter how many times we do IVs we have to expressly ask the home health to send the pump and to fill the meds to be used with a pump.
5. Remember that your body needs time to recover so schedule your drugs with sleep in mind.
6. Become friends with your nurse -- she can save you a load of trouble and help you out of a tight pinch.
7. It is ok to let your friends and family help.  If they ask if they can help, see if they can bring over a dinner for you.  We have found that we only want about 3 dinners a week from others because of all of the left overs. Maybe they can come over and help clean your house or apartment.  Once when Tiffany was in the hospital, we had a group of friends come over and clean the entire house and sanitize everything -- they probably worked for four hours and there were around five of them.  It was great to bring Tiffany home to a clean and sterile environment. (thanks guys)
8. Soft blankets are wonderful -- our best are homemade fleece blankets -- you can email Tiffany for instructions on how to make them.
9. Put a towel below the IV pole and on the arm of the recliner (or whatever comfortable chair you sit in) to protect them from drips and such. Some of the drugs do stain carpet.
10. One I haven’t done yet but plan to do next time, with a small wire or ribbon, tie your little basket to the pole.  Inevitably either my dog or my foot will knock the basket over a couple times in a week.
11. Combine other treatments with IVs such as do your breathings and CPT while you are hooked up.
12. Showers with picc lines and ports are interesting.  For picc lines -- cut both ends of a ziplock back off  so as to make a sleeve of the plastic that can go over your arm where most piccs are inserted.  Cover the the bandaging with a washcloth with the bag on top and then tape off both ends. Unfortunately, we have not found a tape that works good every time and we have tried them all from waterproof to basic tape.  We now just use the one inch wide tape that comes from home-health. For a port, use the heavy plastic bags that your supplies are delivered in or a zip lock bag and cut it just a little bit larger than the bandage over your port and needle.  Cut a wash cloth to the size of your bandage and place it on the bandage and then the plastic can be taped on. Do the top first and then the bottom and then the sides.  For some reason, the tape seems to stick better if you stretch it tight as you put it on.  When you get out of the shower have a paper towel ready as water will always get through the tape but hopefully the washcloth will soak most of it up.  Tear off the tape (every way we found still hurts) and then dry off the dressing with the paper towel.
13. We normally have one of those big shower heads that feels like you are standing under a waterfall but we change out the shower head while Tiffany is on IVs for one those shower heads that is on a hose.  We then place it lower for Tiffany so that the water does hit her head but below the port and then she can wash her hair with the shower head because of the extended hose. The five minutes to change out the shower head is worth it!
14. Keep a trash can handy with good plastic bags. You will have lots of trash and plenty of liquids from tubing and left over drugs in bags. You don’t want that leaking out all over. We used to use grocery bags but too many of them had holes and we would get stuff all over.

The Other Side by DH (part 3 of organization)

When we first started doing IVs at home we would have bags all over the living room with tubing, drugs, needles and other paraphernalia left in the paper bags that they were delivered with everything all mixed together. Our refrigerator became filled with differing drugs added onto the other maintenance drugs such as TOBI and Pulmozyme that already took up the bottom portion of our fridge. As time went we then got a two drawer clear storage bin that you can see in the left part of the picture below. We stuffed everything in it that we could organizing everything in the plastic bags that the supplies were delivered in.  This was a step in the right direction as we separated everything out and put everything that was the same in the same bag from multiple deliveries and multiple times on IVs. Finally we got even more organized to a system that I would suggest to anyone who will regularly be on IVs such as a CFer whose disease is progressing and needs to be on IVs 1-4 times a year in order to fight down the infections. 

In the picture below you see a 10 drawer organizer that is on wheels. This holds all of our IV supplies besides the heprin and saline syringes (which we left in the 2 drawer organizer because of all of the space).  We bought the 10 drawer organizer at Sam’s club and it is the perfect size.  Not too big that it takes up a lot of space but big enough to put all of the extra supplies in that we have collected over time.  It is always good to keep your old stuff (please do throw away anything that has expired -- better safe than sorry) because the home health agencies do not always deliver the right amount of something and it is a bummer to run out of something and realize it at 10 p.m. when it is impossible to get something delivered for your dose that night.  We also keep our extra stuff on hand because you never know what is going to go wrong with health insurance especially right now with all that is happening in our country.  Already in AZ we are starting to see the rationing of major health services like transplants being eliminated from state run programs. In light of these types of issues we try to keep a healthy stash on hand but not so much that it takes over or that we have out of date medical supplies.  It is hard to throw that stuff away, but it is not worth endangering Tiffany’s health because something does not work properly because of its age.  

Anyway, we labeled each drawer with what is in it and now it is very easy to put our supplies away and to find what is needed. Whether it is to flush a port or draw blood, I now no longer have to go through bags trying to find the right supplies but have it at my fingertips in just seconds which saves time and frustration. I then leave this supply organizer in the back of our closet out of the way and where it is not in the middle of our everyday life. From this I then supply our IV basket which I will show you in the next post. This last step of getting an organizer with small compartments that holds everything in different drawers has made it so much easier to stay on top of what we have and what we need.  When I get new supplies I put them in the back of the drawer and bring forward the older supplies. i.e. the tubing that start using at the beginning of an IV treatment is usually from the last time that we did IVs so that what we keep is from the current run of IVs. That allows us to usually use up anything before it expires depending on how often Tiffany goes on IVs. Taking time to organize it all with each delivery saves so much time and frustration.  Take the time to do it -- it is worth it!

The Other Side by DH (part 2 of organization)

The second area of organization is managing your health care providers.  One thing we learned a long time ago is that medical personnel do not always communicate well.  In fact, usually they don’t communicate well.  Although this is frustrating and you would expect them to, we have found that it is best to expect them not to and to over-communicate with the different providers. Some of them are great like our CF nurses -- they respond to phone calls and emails quickly and do what they say they will do and find information quickly.  This is not the norm.

Even though the CF clinic submits orders to home health, we always call home health to verify they have everything we need and go over the orders as they were told us in the dr.’s office.  We also call them right away so that they start acting on it and that we can start the IVs right away. It is ok for you to questions your care -- in fact, I would say it is your responsibility to question your care. Don’t do things that you don’t understand or when some nurse or dr. who doesn’t know you tries to start making decisions that don’t line up with the CF doc feel free to question them.  We have actually refused service in a hospital while Tiff was on IVs until they contacted Tiffany’s CF doc. Once we had nine docs in one day and they all have the answer especially if they are doing their residency .  We get really nervous when some psychiatrist is trying to put in orders on Tiffany’s treatment.  Few dr.’s today have a broad knowledge of medicine -- they are specialists and know their field but beyond that they can get you in trouble.  

If you are using home health, know who you can talk with in the office that will get action.  The reality is just like at your workplace, some people get things done and some people are just there. It is ok to ask for a specific person when you need something. We now have a couple people with our home health company that we won’t talk with because things fail to happen when we talk with them.  We have found that sometimes we even need to communicate with the home health office and with the home health nurse to make sure things get done in a timely manner.  As in most places, getting to know your nurse and being on their good side is vital to any successful treatment whether it is through home health or the hospital.

We ask the home health pharmacy to call us each time before they fill a supply order -- we know what we have and need - they don’t.  They are just following what is on the computer but they don’t see the extra piles of supplies in your living room. I think CFers are a bit of pack rats when it comes to supplies because we never know what will happen or if we will lose our coverage for some unknown reason. Please remember, there is a point when you have plenty of needles for your port and plenty of tubing for the pump. That leads to my next post -- organizing your drugs and supplies while on IVs.