Your CF Success Packet

When was the last time your nurse asked you a question, and you could not remember the answer?

When you keep a CF Success Packet, you will have the information that you need at your fingertips for all your doctor appointments.

Options for where to keep the information: (use whatever works for you)
* Mobile phone notepads
* On index cards held together by a binder clip (index card dividers to separate categories come in handy)
* 3 ring binder with pages punched and dividers to divide categories

Contents of your CF Success Packet:
1. Medical Contact Directory
2. CF Treatments List
3. Prescription Refills Reminders
4. Medical Data Calendar
5. Weekly Weigh-In Chart
6. Annual Visit Checklist
7. Vaccine Records
8. Glucose Charts
9. Q & A
10. Lab slips for pre-visit blood work

1. MEDICAL CONTACT DIRECTORY:
Practitioners, pharmacies, health insurance providers, reimbursement programs, and medical equipment suppliers.

2. CF TREATMENTS LIST
List of prescriptions, supplements, and equipment.

3. PRESCRIPTION REFILLS REMINDER
Make sure your pharmacy has enough prescription refills left for every one of your medications and supplies. This reminds you to ask your doctor for a prescription with more refills at your next appointment.

4. MEDICAL DATA CALENDAR
During each appointment you must be prepared to answer questions asked by your CF Center team members. In order to do so you may need to record certain information in between CF visits.
Here are some sample questions:
• Are you on Tobi? When do/did you finish your rotation?
• Have you had any unusual symptoms? When?
• Are you on your menstrual period? When was the last day?

Instead of trying to remember all of this data on your own, I suggest you write it down between visits in a separate calendar that you reserve for your medical data. Make sure to keep the calendar in your CF Success Packet and bring it to your visits.

EASY WAY TO REMEMBER TOBI ROTATIONS: Start Tobi on the 1st day of the month and end on the 28th. Make sure your CF Team approves of this before you proceed.

5. WEEKLY WEIGH-IN LOG
The habits of weighing yourself weekly and recording the weight reminds you to keep eating frequent, nutritious meals or to include more snacks in your meal plan.

6. ANNUAL CHECKLIST
This is a list of annual tasks that occur during your annual CF visit.

7. VACCINE RECORDS PAGE
Make sure you get your annual vaccines as well as keep record of all vaccines previously administered. Add to it each year.

8. Q&A
Write a list of any questions you have for your doctor before each CF appointment so that during your visit you can write down the answers below them. Also record ideas, results from tests, any changes in dosage, etc.

9. GLUCOSE CHARTS
Patients with CFRD must keep detailed records of their glucose levels to show to their CF specialist and endocrinologist.

Take things bit by bit. You may just start by filling out the most essential parts of the chart. Select the level that works for you:

Beginner Meal Chart
• Glucose levels before meal
• 2 hours after meal
• Insulin dosage

Advanced Meal Chart
• Glucose levels before meal
• 2 hours after meal
• Insulin
• Foods eaten
• Time of meal

Whatever information you record, your doctor will be pleased to see consistent effort. In my experience the most important thing to keep track of is the blood sugar reading 2 hours after the meal. If it is high, you must increase the dosage of insulin the next time you eat that meal. If the reading is too low, you must decrease the insulin dosage.

10. LAB SLIPS
If your doctor asks you to come in a week early for pre-visit blood work, keep the prescription in a pocket of your CF Success Packet. Bring it with you to the lab, as they cannot do the test without it!