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Caring for Your Loved One after Transplant

The day someone you love comes home after a bone marrow or cord blood transplant (also called a BMT) is usually a happy one. Everyone is glad to be coming home. However, it can also be frightening to leave the constant care the transplant team provided in the hospital. The transplant patient may still need a lot of help from you. Many caregivers find they have more to do now than during the hospital stay. You may feel ready for your lives to be more normal, but the patient's recovery can take a long time.

Caring for the patient's health

You may find the return home is the first time you need to provide care for the patient on your own. In the hospital, most likely the nurses cared for the patient. Now, the patient may be able to take care of himself or herself, or much of that care may fall to you. Each patient's needs will be different. For a list of some of the health care tasks you could have, see Becoming a Member of the Health Care Team.

For some possible side effects, such as an infection or graft-versus-host disease, it is important that a patient be treated quickly. It can help to plan ahead how you will handle questions and emergencies. Be sure you know what symptoms to watch for. Ask your transplant center and/or the doctor who is caring for the patient what you should do when you have questions or the patient needs help. Find out the phone numbers to call during office hours, at night and on the weekends, and keep the numbers handy.

Managing financial issues

Returning to work

If you took time away from your job to care for the transplant patient, you may need or want to return to work now. In some cases, your loved one still cannot be left alone. Perhaps other family members, friends or volunteers can help so you are able to return to work. Keep in touch with your employer about how long you can be away from work. Also continue to talk with your employer about your health insurance and other benefits to be sure you do not lose them during your absence.

Managing ongoing medical bills

You may be helping to work with the patient's health insurance and managing the medical bills. The costs of a transplant continue during the patient's recovery. For example, there may be co-pays for the many doctor visits and medications needed after the transplant.

It is important that the patient's health insurance coverage does not lapse during this time. If the patient loses coverage, it can be hard to get new insurance. If the patient faces losing insurance coverage through his or her employer because of the long absence from work, look into:

Adding the patient to your own insurance policy, if you are the patient's spouse.
Continuing insurance benefits through COBRA (the Consolidated Omnibus Budget Reconciliation Act). COBRA gives people the right to keep their health plan for a certain amount of time after leaving a job. COBRA payments may seem high, but the cost of losing insurance would be higher.
Joining a state risk pool program. Some states have risk pools that serve people who have trouble getting insurance because of a pre-existing health condition or other reasons.

You may also need to find other resources to help with the costs:

The National Marrow Donor Program (NMDP) and its partner The Marrow Foundation^® offer some financial assistance for post-transplant costs.
Other organizations may also offer resources.
Many families need to start or continue fund raising to help cover the bills.

The NMDP can answer your questions and help you find resources to manage post-transplant costs. To contact the National Marrow Donor Program Office of Patient Advocacy: Inside the United States, call 1 (888) 999-6743. This call is toll-free in the United States. Outside the United States, call 1 (612) 627-8140. This call may have long-distance or international charges. NMDP OPA staff are available Monday - Friday, 8 a.m. to 5 p.m. Central time. You can also send an e-mail message to patientinfo@nmdp.org.

Coping with emotional challenges

For some people, the return home brings unexpected emotions. Sometimes the patient does not feel better as quickly as expected. Medications or feeling ill and tired can affect the patient's moods. You may both feel frustrated if the patient is not able to do many activities, help with household tasks or simply be more like his or her old self yet. This all takes time. And things may never be quite the way they were before.

Adjusting to what is often called the "new normal" of life after transplant takes time. Turning to a support group or talking to a professional counselor may help. For more about managing these post-transplant challenges, see:

Reaching out to family and friends

When the patient returns home, family and friends may assume you no longer need help. Don't be afraid to let them know you still need their help. Many people will be glad to keep giving you their support if they know it is needed.

If your loved one is feeling ill or depressed, you may need to help him or her keep in contact with family and friends. Sometimes they do not know what the transplant patient wants from them now. You can help let people know how to act. Does your loved one:

Want to see visitors or prefer some time alone?
Want to talk about what he or she has been through or prefer to talk about other things?
Want to hear about other people's successes and complaints, or will they seem trivial after facing a life-threatening disease?

You can also explain how they can help protect your loved one from infection. You can make sure people who are sick do not visit and all visitors wash their hands when they enter your home. For more information, see Preparing Your Home for Your Recovery.