Being regular with follow-up tests and visits to the transplant team are most important to make transplant a success.
- Donors need follow-up every 5 – 7 days for the first 1 month, after which they will have to get tests and review at 3 months and 1 year.
- Recipients need life-long follow-up, very frequently initially, and less often later, as per the schedule given at discharge. Once the reports become stable and medicines well adjusted, patients can travel, e-mail their reports to us and visit the clinic once in every 3 – 6 months.
- Transplant clinics are held in selected cities of the country every month so that it is convenient for patients / their families to attend. Please contact the post-transplant coordinator to know the schedule for your city.
- In case of problems, please call the transplant team. Please identify a local physician and gastroenterologist for an urgent situation.
- Routine monitoring of blood pressure, blood sugar, diet intake, exercise, insulin administration and other parameters as advised at discharge. Post-transplant coordinators will teach the patient and the donors the same and this should preferably be done by one of the family members. Maintain a file and keep charts of all the lab reports in chronological order and the dose of immunosuppressant taken and bring this file during clinic visits.
- In case patients need dressing changes, physiotherapy or administration of injections at home, family should make arrangements for a nurse or physiotherapist. Our coordinators will help in identifying qualified people familiar with the needs of transplant patients.
- It is important that one follows our team’s instructions about any problems before they become serious. This enables the treatment to start early, and courses to be shorter and milder.
Medications
At the time of discharge, patients are generally prescribed 10 – 15 medicines, some of these may be injections. As they make progress, the numbers of drugs are reduced, and at about 1 year, most patients are on
1 – 2 anti-rejection medicines and those for pre-existing illnesses. Patients and their families should familiarize themselves with the medicines prescribed-
- Anti-rejection (immunosuppressant) drugs lower the immune response, thus prevent rejection of the liver, and have to be taken life-long, because the liver always retains its original identity. Failure to take these medicines may lead to rejection even many years after transplant.
- Drugs to prevent complications and side-effects: antacids, antibiotics, anti-fungals & blood thinning medicines.
- Supplements: Vitamins, Calcium, Magnesium.
- Drugs for pre-existing illnesses (e.g. anti-asthmatic, anti-diabetic, anti-hypertensive).
- Medications should be taken at fixed times and their doses, frequency or duration changes should never be changed unless advised by the transplant team. Also, whether the medicine should be taken before or after meals or before going to sleep at night is mentioned in the discharge summary.
- Drug levels of anti-rejection medicines (Tacrolimus, Cyclosporine, Sirolimus) should be drawn before taking the medicine in the morning, this is to ensure desired results and avoid any side effects.
- Missed medication doses should not be double dosed; it should be resumed at the normal dose.
- Failure to take prescribed medicines is dangerous and is the most common reason for rejection and even failure of transplanted liver.
- Patients should not self-medicate, even with over-the-counter medicines, for small problems such as cough, cold, loose motions or fever because they might not be aware of the interactions of these medicines with their transplant medicines. They should consult a specialist doctor and speak to the transplant team before starting treatment, including the ones prescribed by other doctors.
- Patients should always check with their transplant doctors before having any immunization or vaccines.
- Patients should try to discuss and learn side effects of various medicines and inform the transplant team if they are experiencing any problems after taking them.
- Detailed updated medication record should be maintained including doses given
- Most importantly, one of the family members or the patient himself should take charge and responsibility for medication administration.
Guide for medication frequency
OD : Once a day (at 24 hrs. gap)
BD : Twice a day (at 12 hrs. gap)
TDS : Thrice a day (at 8 hrs. gap)
QID : Four time a day (at 6 hrs. gap)
BBF : Before breakfast
HS : At night before going to sleep
A/D : Every alternate day
SOS : Whenever needed
Blood sugars / Insulin
- Please check blood sugars as instructed by the transplant coordinator, generally it should be checked 4 times daily
- Before breakfast : 7 am
- Before lunch : 12 noon
- Before dinner : 7 pm
- 2 hours after dinner : 9 pm
- Insulin should be taken only after checking blood sugar and before a meal.
- If blood sugar is less than 100, please skip the dose however, regular meal can be taken.
- If blood sugar is less than 80, eat some glucose rich food such as sugar, chocolate, etc, skip insulin dose, have a regular meal and re-check blood sugar.
- If blood sugar is more than 400, please take prescribed insulin, have meal and speak to the endocrinologist / transplant team.
- Follow doctors advise
Danger and warning signs
At home, some of the warning signs to watch are:
- Fever greater than 100˚C
- Shortness of breath
- Cough with yellow / green sputum
- Nausea / vomiting / loose motions
- Drainage / redness / swelling at incision site
- Persistent or worsening abdominal pain
- Burning sensation while passing urine
If donor / patient experience any of these symptoms, please contact the transplant helpline. One of the doctors from the transplant team is always available in the hospital to take care of urgent problems. If the problem appears serious, patient should go to the emergency department and will be seen by a doctor from the transplant team who would be able to conduct tests, give IV medicines or even re-admit, if required.