I created a "kidney binder" that I carry with me to all of hubby's appointments. I have found it really comes in handy, like today when the Dr didn't have the current blood work and I was able to pull it out of my binder and allow them to copy it. Saved hubby from having to get more blood drawn today and saved us money since getting blood drawn at the hospital costs us more.
What do I keep in the binder?
When I open my binder there is a manilla page divider. It is labeled "notes" and written on it are important phone numbers, like the doctor, the social worker, the dialysis nurse, the insurance company, and all the current medicines my husband is taking. Every appointment we have had, they have asked about medication, so it is really important to have that in an easy to find place.
Next is a bunch of loose leaf paper where I take notes. At every appointment I start a new page and write the date, who we saw, his weight and blood pressure, and almost everything we are told at the visit. It is great to have as a reference.
The next page divider is labeled "test orders". This is where I keep future blood work slips and other medical order slips. Hubby was part of a test study and we were given 4 months of blood work slips on one day, they were stored here and easily found when needed.
The next tab is labeled "information". This is where I keep sheets that we were given with information. One sheet is on a medicine that hubby was going to start taking, another is on PD dialysis (peritoneal dialysis), and any other information sheets we are given will go in that section.
Next is "appointments". This eventually can be cleaned out, but every time hubby has an appointment we are sent a reminder sheet in the mail, I put them all in here so we can reference them if we are unsure about an appointment time. There are lots of appointments, with a lot of different people and departments. It can become very overwhelming, so this does help, even if just a little.
The final section I have labeled is "blood work". Hubby always requests a copy be sent to our home, so we have all the blood work from the last few years. This really comes in handy!
Finally there is a section I haven't labeled yet. It will be labeled, "consent forms". As we are preparing for his surgery, he has been asked to sign a lot of papers. We have started asking for copies of everything he signs. Sadly today we were a little overwhelmed and forgot to get copies. I will call them Monday and ask that they send us copies. This is really important to try and remember, but it is totally understandable when it is forgotten.
Something I haven't done, but now see the need for is to make a checklist for every appointment and include asking for copies on there! When I create my checklist I will share it here in case you would like to print it out and use it.