You will need to keep track of a number of things as you adjust to your new liver 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.
Read below for a summary of how and when to keep track of your health so you have the best chance of success with your new liver.
Fluids
It is important to stay hydrated because tacrolimus (an anti-rejection medication) can put stress on your kidney.
Temperature
If you feel unwell, check your temperature.
If you have a fever and a central venous catheter (PICC, CVL) in place, contact your transplant team right away and go to your nearest emergency department. Fevers need to be taken seriously, as central venous lines place you at higher risk for serious blood stream infections.
A fever is not a medical emergency if you do not have a PICC or CVL. Often fevers are caused by factors such as colds and flu. Your family doctor can identify the cause of the fever and instruct you how to manage it.
Medication doses
Always have enough supply of medications – never run out. Make a note in your journal if you miss a dose of your medications. Tell your transplant team as soon as possible if you need a refill on your medications.
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 with flecks) and how quickly you need to get to the bathroom. Speak to your transplant team if the diarrhea or vomiting is becoming worse. Your transplant team can also remind you about what to do if you vomit soon after taking your immunosuppressants.
Always tell your transplant team immediately if:
- you see any blood, or any stool that looks like it could contain blood
- the stool is black.
Your transplant team will also want to know if you are experiencing constipation.
Appointments
Use a reminder device such as a calendar or your journal, phone, computer or tablet to record the date and time of each:
- blood work appointment
- transplant clinic appointment
- ultrasound or other scans.
Never miss your blood work. If you forget an appointment, call your transplant team and arrange to do it as soon as possible.
Remember that you will be followed by a hepatologist (liver specialist) 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.
Make a note of other regular appointments such as those with your dentist or ophthalmologist. The next section has more information about caring for your teeth and eyes.
