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Resource Guide for Bone Marrow/Stem Cell Transplant
Preparations for the Transplant
Once the decision has been made to have a stem cell transplant, lots of preparation is needed. On an emotional level, preparing for a transplant may entail spending time with friends and family or taking time out to be alone to experience one’s feelings about the transplant. On a physical level, this may mean eating a healthful diet, getting good dental care, and maintaining an exercise routine. On a practical level, it may mean choosing a transplant center, organizing caregiving arrangements and obtaining items for a hospital stay.
As indicated, selecting a transplant center will be a big decision. Talk to your doctor and check with the insurance company to learn about your options. Family factors may influence your choice of centers. Foremost, choose a center that has a good amount of experience with your type of disease and in performing transplants. Do your research and ask questions. If possible, visit the medical center before your transplant.
There are distinct advantages to having the transplant at an experienced medical center with an excellent track record. If, however, there is no center near your home, you have concerns about the center’s reported outcomes, or the center has performed too few of the kind of transplant you need, then the choice may be more difficult. Calling the National Marrow Donor Program (NMDP) to get a listing of centers performing unrelated stem cell transplants is an excellent way to get initial information. The NMDP Transplant Center Access Directory contains phone numbers and addresses of most transplant centers with information about the number and type of transplants performed at each center as well as some statistics about survival rates at each center. Additionally, BMT InfoNet offers a comprehensive listing of transplant centers on its website (see Resource Listing).
Other important considerations may include insurance coverage, proximity to family, follow-up care, and living arrangements should you select a center away from home. Signing on to stem cell transplant bulletin boards or newsgroups on the Internet can be another useful way to get information. It may be helpful to get personal accounts and recommendations, but beware that this can also result in “misinformation.” Your health care team should be relied upon for the most accurate medical advice.
Help get yourself and your family prepared to meet the transplant challenge. Put together a notebook or binder to record information from your doctor visits and/or take a tape recorder along with you. Take a family member or friend with you during discussions with your medical team. They’ll provide backup support in understanding what was said. Don’t hesitate to voice concerns.
Aside from the physical examinations and testing that you’ll undergo, family and “support team” readiness is very important. Planning and discussions between hospital staff and family will be helpful. Questions about finances, employment, delegating responsibilities, and more should be addressed within a family setting. Prepare children (as patients themselves or as children of patients) to cope with the transplant. This is done through education and simple (not scary) discussions about the procedure. Frequently offer children a chance to ask questions about the transplant. Request age-appropriate material from your health care team to help children understand. Attend information or educational sessions at the transplant center to learn about what you can expect before and after transplant.
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