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.
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