You will need to keep track of a number of things as you adjust to your new kidney after surgery. Use the long or short version of your health journal (depending on whether you also use MyHealth Passport) to record the information outlined below. Over time, the record of this information will help you to spot any patterns or changes in your symptoms.
Review the summary below of how and when to keep track of your health so you have the best chance of success with your transplant organ.
Fluids
Keep track of the fluids you drink. Your transplant team will tell you how much they expect you to drink each day. Remember this is your total fluid intake (TFI). At first, you may need to write this down. It is important use your journal to note any days where you have not had the amount of fluid recommended by your team.
Temperature
If you feel unwell, check your temperature and write it in your journal. Visit your doctor if you have a fever and are feeling unwell.
Medication doses
Always have enough supply of medications – never run out. Make a note in your journal if you miss a dose of your immunosuppressant medications.
Blood pressure, if needed
If you have high blood pressure and your team has asked you to take your blood pressure (BP) at home, note the result in your journal.
Diarrhea and vomiting
If you develop diarrhea or vomiting, keep track of the number of times each of these happens. Note the amount and what it looks like (for example watery vomit with flecks) and how quickly you need to get to the bathroom. Speak to your transplant team if the diarrhea or vomiting becomes worse.
Swollen legs or ankles
Check your legs and ankles at the end of the day and note in your journal if they are swollen.
Other medicine side effects
If you are experiencing minor problems or other medicine side effects, such as acne, upset stomach or tremors, note them in your journal and remind yourself to ask your team about them at your next appointment.
In summary, use your journal to record:
- when you have missed medications or not drunk all of your fluid
- your blood pressure readings
- any symptoms or side effects and when they occur
- what makes your symptoms or side effects better or worse
- how your symptoms or side effects affect your day-to-day activities.
Appointments
Use a reminder device such as a calendar or your journal, phone or laptop to record the date and time of each:
- bloodwork appointment
- transplant clinic appointment.
Never miss your bloodwork. If you forget an appointment, call your transplant team and arrange to do it as soon as possible.
Remember that you will be monitored by a transplant team for as long as you have your kidney, even when you move to an adult hospital. Regular appointments are essential because they allow the team to detect and treat any problems such as rejection or infection as quickly as possible.
Note down other regular appointments such as those with your dentist or ophthalmologist. The next section has more information about caring for your teeth and eyes.