Leaving the hospital

Taking your medicines

Returning home


Leaving the hospital
Your health care team will work with you to determine when it is time for you to leave the hospital. Many factors will impact the timing of your discharge, including:

• Side effects or complications that may occur during hospitalization
• Availability of a caregiver to help in the outpatient setting
• Type of transplant

Even after you leave the hospital, you will need to come to the BMT outpatient clinic often for continued care. You will have BMT clinic appointments three to seven days per week in the inital period after discharge from the hospital. If you do not live near the hospital, you will have to stay somewhere in the Twin Cities for two to three months after you leave the hospital. A clinical social worker can help you make arrangements for temporary housing before your transplant.

In general, people who have an autologous stem cell transplant can leave the hospital more quickly than those who receive an allogeneic transplant. Many people who have an autologous transplant can leave the hospital the day after receiving their cells. Adults undergoing an allogeneic transplant may be in the hospital for four to six weeks after the transplant.

Before you leave the hospital, we will coordinate a number of services for you. You may need:

• home nursing care
• medicines
• nutritional guidance or support
• social services
• physical or occupational therapy

Your health care team will explain what you and and your caregiver(s) need to know before you leave the hospital. You will learn about your medicines, for example. You will also learn how to properly care for your central venous catheter.

After discharge from the hospital, you may experience fatigue and weakness. It is important to have one or more caregivers available to assist you. Caregivers will keep track of your medicines, appointments, and other concerns. Caregivers may also need to provide you with transportation to and from your clinic appointments. If your family has housing near the hospital, a shuttle service may be available.

The first few days out of the hospital may be especially difficult. In the hospital, you will have been used to round-the-clock care from experienced medical caregivers. Leaving that behind may make you anxious. Many people find that the transition from hospital to outpatient care is harder than expected. However, with time and support, your comfort and confidence increases.

If your home is far from the hospital, try to make your temporary living situation as "homey" as possible. Stay in touch with loved ones by phone, letters, and e-mail. Also, take advantage of support groups organized by the hospital.

After you leave the hospital you will feel tired. You may experience changes in your vision and have difficulty concentrating. Remember that you may need a period of adjustment to life after a transplant. You may want to do everything you did before the transplant, but this may not be possible at first. It takes time to recover from a transplant.

Recovery is different for everyone. Some people recover soon after a BMT. They go back to work and start participating in their regular activities within a few months. Others recover more slowly, experience setbacks, and may return to the hospital. Some never fully return to their former health and activity level.

Getting back into a normal routine takes time and patience. Consider a part-time schedule when returning to work, household chores, and hobbies. It is important for you to pace yourself and set limits when reconnecting with loved ones. But don’t isolate yourself by avoiding friends and family. Improvement occurs gradually as strength and endurance return.

Taking your medicines
You may need to take a lot of medicines when you get out of the hospital. It is very important to take your medicines as prescribed. Before you leave the hospital, nurses will give you written instructions and a schedule for taking medicines. Medicines should not be stopped without checking with your doctor.

Consider these tips for dealing with medicines:

• Learn the names of your medicines, their appearance, and the reason for taking them.
• Keep a list of known allergies and current medicines with you in your wallet or purse.
• Get prescriptions refilled five to seven days before running out of a medicine. However, be sure to ask your medical team if any of your medicines will be discontinued soon. That way, you won't get refills for medicines that you are about to stop taking.
• Store medicines in their original containers in a cool, dry place away from bright light.
• If you have trouble remembering when to take your medicines, a doctor or nurse can offer ideas on the best way to schedule them. A pill box with different compartments for different times of the day, for example, may help. A medicine schedule or chart is also useful.
• It is important to tell your health care team about any medicines you take, including over-the-counter medicines, vitamins, and herbal remedies. Do not take herbal remedies without first asking your physician. Some herbal remedies contain substances that can cause infection.
• Always bring a list of your medicines to your clinic appointments.

Your return home after transplant
When you arrive home from the hospital after a blood and marrow transplant it is usually a happy time. Everybody is glad you are coming home. Even so, you will need a lot of care.

Planning for your return
Leaving the constant care you had in the hospital can be frightening. By planning ahead, you may feel more confident about handling questions and emergencies. It is important to know what symptoms to watch for. We will help answer any question you might have about your medical care.

Your plans for your return from the hospital may include:

• Preparing your home and making changes in your household routines to avoid infection risks.
• Returning to your doctor for follow-up health care.
• Supporting your recovery by encouraging healthy practices, such as washing hands to avoid infections, eating healthy foods, and getting exercise.
• Planning a routine for taking your medicines, and for self-care, work and play.
• Posting a schedule that includes a clear timetable for taking your medicines can make it easier to share caregiving.

If you have children, think about how the new routine will affect them and how they can be part of it.

Healing at home
You may expect to feel well as soon as you get home. But the healing process can take a long time. It may be weeks or months before you have your energy back. You will still need medical care, such as help taking your medicines at the right times and caring for your central line. We encourage you to play an active role in self-care, depending on your confidence and your energy level.

You will also have frequent visits to the hospital or clinic to check your progress. For about the first 100 days after transplant, you will be cared for by our transplant doctors. In time, you will most likely return to the doctor who treated you before transplant. It will be important for your regular doctor to stay in close contact with the transplant doctor. You will receive the best care when you and your regular doctor and the transplant doctor work as a team.

Returning to normal
Family life has changed while you were in the hospital. For many months, your health was the focus of attention. Now your family can return to more balance and address other needs. It may take some time and effort for everyone to adjust. Things will never be exactly the same as they were. This is your family's chance to create a new "normal."

You will adjust and gradually return to activities as well. At first there will be limits on what you can do because of infection or bleeding risks. In time these risks grow smaller and you can relax these limits. Regaining independence is an important part of your recovery. Try not to protect yourself more than is really needed. Give yourself the independence you are ready to handle.