Home from the Hospital
Our case manager will work with you and your family to plan your discharge from the hospital. Some patients may need to spend some time in an inpatient rehabilitation facility, or a skilled nursing facility, to regain their strength before they are able to head home. Some patients may leave our inpatient unit on Farr 10 and go directly home, with the help of visiting nurses in their community. But in most instances, your family will be able to provide the help you need after discharge. Your caregivers and case manager will help you decide which option is right for you, and make any necessary arrangements.
Home at Last!
When you have recovered enough to be at home safely, have learned how to care for yourself, and your new liver function is stable, you will be ready to head home! Remember, you have traveled a long, sometimes rough road to reach this point. You may feel anxious, frightened and overwhelmed. It will take some time for your energy level to get back to normal and for you to get used to the routines you need to follow to stay well.
Call your transplant team if you have any questions or concerns. And refer frequently to the written material we gave you at discharge and to the information on this web site.
One Day at a Time
Although other people may assume you are "fine" now that the surgery is over, remember that you need to be patient during this recovery phase and follow the advice of your doctors and nurses. You will feel better as time goes on, but it will take a while. You may have some setbacks and feel discouraged. Share your feelings with your family, others who are close to you, and your doctors and nurses. If you are concerned about what you are feeling, talk to the transplant social worker or psychologist. They will help you work through these feelings.
The transplant team has made sure you are well prepared to be at home. If you have any questions or concerns, never hesitate to call us - your doctor, nurse coordinator or social worker. You have a lot of information to learn and understand, and we always are here to help.
Before you leave the hospital, we will schedule a follow-up appointment for you with your transplant surgeon and hepatologist. It is very important to keep this appointment and future appointments so that we can check your progress, review your medications, and do certain laboratory tests to be sure you and your new organ are doing well. You will need to have blood tests performed twice weekly at home or at your local laboratory near home, between visits as well. We may order other tests, such as X-rays or a biopsy, at certain times, too. Patients who have hepatitis C virus before transplant must undergo liver biopsies at three, six and 12 months after transplant and yearly thereafter. Liver biopsies may also be done at any time if your blood tests are elevated to help determine the cause of the elevated liver blood tests.
Your visits at the Transplant Institute will generally follow this schedule:
- Once a week for the first 12 weeks.
- Once every other week for the next 12 weeks.
- Monthly for the next six months.
The frequency of your outpatient visits to the center decreases depending on your progress and condition, and how closely you are followed by your (referring) primary care physician and/or gastroenterologist in your hometown or community.
If you still have a T-tube in place following your transplant surgery, doctors perform a cholangiogram at six weeks and again at four months. During surgery, just before transplanting your donor liver, the surgeon removes your diseased liver and your gallbladder, and inserts a T-tube, a drainage tube to help the area heal. A cholangiogram is a special X-ray, using dye injected through the T-tube, so doctors can check to be sure your bile ducts and liver are healthy. If the cholangiogram is normal at four months, doctors will remove the T-tube.
Medicines and Your Medication Card
You left the hospital with a medication card that describes the names of the medicines you are taking, what dose to take, and when to take them. At your follow-up visits, your doctor and transplant nurse coordinator will review your medications and discuss any concerns you have, including side effects. Because medications are sometimes adjusted to achieve the best results with the fewest side effects, please bring you medication card to your follow-up appointments to record any changes.
Here are some important things to remember about taking your medication:
- Keep your follow-up appointments and complete any lab work or additional tests your transplant team schedules.
- Take your medications exactly as instructed.
- Make every effort to take your anti-rejection medications, as well as your other medications, at the same time every day.
- If you missed or threw up a dose of your anti-rejection medicine and do not know what to do, call your transplant team.
- Do not use any over-the-counter medicines without checking first with your doctor or nurse.
- Do not use alcohol, cocaine, heroin or marijuana, as they WILL put your transplanted organ at risk.
- Call the transplant team if you have any concerns about your medicines. Call if you have the slightest change in your condition, even if it is just a question. The earlier you call, the sooner we can address any evolving medical situation.
- Telephone 617-632-9700, Monday through Friday, from 8 a.m. to 5 p.m. Call the same number after hours if you have an urgent question and the operator will connect you to the transplant coordinator on call.
- As a courtesy to our transplant nurse coordinators, please call for non-urgent issues during regular business hours. They will respond promptly, but please do be patient because they may be attending to other emergencies. For URGENT issues feel free to call anytime and a transplant nurse coordinator will call you back promptly and can contact the transplant physician or surgeon immediately if necessary.
- For any prescription refills, please call only during regular business hours.
- Bring your medication card with you to all of your follow-up appointments.
- For more tips about taking your medications, including organizing your medications and traveling with medicine,
More about Medication after your Transplant
It is important for you to learn as much as you can about your medications. To help you, we have developed a number of patient information sheets describing the medications commonly prescribed after transplant surgery, and a "test" you can take to review your knowledge. The patient information sheets listed below include, among other details, how to take the medication and common side effects:
Your Daily Record
The transplant team will give you a chart to take home with you. Write down information about your:
- Incision and tube site
- Tube drainage
- Blood sugars (if applicable)
The nurses on the transplant unit taught you how to take these vital signs while you were in the hospital. It is important to keep an accurate record. It will help you identify early signs if there is a problem, and allow your doctors and nurses to monitor your progress.
In order to fill in the information on your daily record sheet consistently and accurately you must:
- Take your temperature once a day at the same time of day
- Weigh yourself at the same time every day on the same scale wearing the same amount of clothing
- Check the color of your urine
- Check your incision and tube site for an increase in redness and unusual drainage
- Measure the amount of fluid draining from your tube site if you have one
- Test your blood sugar two times a day: in the morning (this is called a fasting blood sugar) and in the late afternoon
Be sure to write down all of this information every day. And bring your daily record to your follow-up appointments at the Transplant Institute.