Resources

Survivors' Guide for Bone Marrow/Stem Cell Transplant
What to Expect and How to Get Through It

Practical Preparations

Choosing a Center
Choosing a center is complex, and your choice may have to do with a combination of factors including the track record of the center, where you feel most comfortable, your support network, your finances as well as other personal factors. One important factor to consider is the size of the transplant center, the number of transplants performed for people with your condition and age group, the survival rates, and the experience of the doctors and staff. There are distinct advantages to having the transplant at a large experienced center with an excellent track record. If you have such a center close to home, the choice of where to do the transplant will be easy. If, however, this is not the case and there is no center near your home or it has a poor track record or has performed fewer than ten transplants of the kind you need, the choice may be more difficult. Undergoing a transplant at a large transplant center with a good track record and a great deal of experience provides you with a sense of security that the physicians and staff will be able to handle unexpected complications if they arise. Bigger centers may, in some cases, also have the advantage of having access to large blood banks that can cater to the needs of transplant patients. However, large research centers may have the disadvantage of being more impersonal than small centers.

Having the transplant at a center close to home allows you to be close to family and friends and to have a stronger support system on hand. You will also save on travel expenses and will not have to deal with the hassle of moving to an unfamiliar place. Your life and the life of your caregiver will be less likely to be disrupted, and you may have the advantage of already being familiar with some of the doctors and staff.

Calling the National Marrow Donor Program (NMDP) to get a listing of transplant centers is an excellent way to get initial information about different centers. The NMDP guide 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. Contact the BMT Infonet for similar data.

In looking at these statistics, you need to be aware that the general statistics often include all categories of age groups and diseases and thus may be inapplicable to you. In order to really compare survival rates of different transplant units, you need to ask about the survival rate for your age group, your illness and the type of transplant you will undergo. Getting this information may be a difficult and frustrating process as some centers are reluctant to disclose this information. Since gathering this information can be stressful, you may consider recruiting friends or your doctor to help you with this task. Signing on to bone marrow transplant information bulletin boards or online support groups on the Internet can be another useful way to get information. Many transplant survivors read these boards daily, answer questions and share information about their experience. Information about signing onto the Internet can be found in the Resource Listing.

Calling different centers to ask questions can provide useful information and give you a better sense of the transplant center and its atmosphere. Things you may wish to inquire about include the following:

1. How many transplants has the center completed for people with your specific condition? (Ideally, you should undergo a transplant at a center that has done at least ten transplants of the type that you need).
2. Are you going to have the same staff treating you throughout the transplant? (Most transplant centers have doctors and physician assistants rotate on a regular basis).
3. Will you be allowed to go outside, walk in the halls, or will you be confined to your room?
4. Will you have access to an exercise machine? Will you be visited by a physical therapist?
5. Will you have access to a social worker or counselor during the transplant?
6. Can the hospital accommodate your dietary needs? Can you ask for food at any time of the day or do you have to order it a day in advance? Are you allowed to eat raw fruits and vegetables? (Having a flexible eating schedule can be helpful as you may be nauseated and may not want to eat during conventional mealtimes).
7. What is the average time that the nurses have worked in the BMT unit?
8. How experienced are the physicians at the center and are there specialists available to handle complications should they arise?
9. Is there a support group for patients or their families?
10. What is the survival rate for patients with your condition in your age group undergoing your type of transplant?
11. How does the staff feel about patients putting up “Do Not Disturb” or “Please Knock” signs on the door?
12. Could someone who has undergone a transplant at the center contact you to tell you about their experience?
13. What is the visitor policy? How flexible is it? (Having your caregiver stay at the hospital overnight can be very comforting).
14. What living arrangements can be made for you and your family if you need to move away from your home to the transplant center? What will the cost of the living expenses be?
15. Can the center provide any assistance to defray some of the family’s expenses?
16. Does the center have a long-term follow-up clinic that is easily accessible and will respond to questions once you leave the transplant center? (This is particularly important if your oncologist in your area of residence has very little experience with transplants).
17. Individuals undergoing a transplant from an unrelated donor should also inquire whether the center has a donor search coordinator and a quality tissue typing facility.

Visiting the transplant center before the transplant to familiarize yourself with the transplant setting and some of the staff is often comforting. While you are there, you might inquire if you can speak to patients undergoing transplants at the center to get their impressions, feedback and tips. One woman who did this, writes:

I remember visiting the BMT floor shortly before my transplant and being introduced to a woman who was on day 7 post-transplant. She was sitting on the bed, laughing profusely with two good friends. To me she looked like the picture of health. When I spoke to her, she assured me that she was feeling a lot better than she had expected. My visit to her did a lot to alleviate my fears.

If you need to travel to your transplant center, you may save money by contacting companies that provide discounts for medically necessary travel. Most of the major national cancer organizations will have information about these companies. Sometimes airlines will also provide discounted fares for patients and their caregivers. Organizations, such as The Leukemia & Lymphoma Society and Cancer Care will also often reimburse some travel expenses to and from medical centers. Please check the Resource Listing for more information.

Caregiving Arrangements
During the transplant, you will need at least one family member or a friend who can provide you with emotional and physical support. This person is often referred to as a caregiver. In many cases, it will only be possible for you to have one caregiver with you. If this is the case, you may consider arranging occasional visits by other family members or friends who can provide additional support during weekends so that the caregiving task does not fall on just one person. Ideally, however, you will be able to arrange to have more than one caregiver as the role can be very demanding. One woman who only had her mother as her primary caregiver while her husband continued to work and do household tasks commented:

In retrospect, I think both my mother and my husband were taxed beyond their limits. Though they didn’t complain, I think it was a Herculean task they each assumed. I’m not sure what we could have done to improve the situation—it might just have been another one of those “tunnel situations” where one just has to keep putting one foot in front of the other to get through that tunnel.

Another man writes:

I did not like the fact that all of the burdens were on my wife. I worried about her as much as I worried about myself. All the extra worry, work and travel to and from the hospital each day was wearing her down… This made me fight harder to get well faster so I could take over my part of our life together.

Even though many people successfully make it through the transplant with only one caregiver, having two or more caregivers is a real plus. When there are two or more caregivers, each one can have time to rest and can return to the hospital more refreshed. Having more than one caregiver is also helpful as it allows you to share your feelings and experiences with more than one person. Since caregivers often experience a high degree of anxiety, sharing the responsibility of caring for you can serve to alleviate some of the tension. Finally, having more than one caregiver provides a safeguard in the event that a caregiver gets sick and is unable to visit.

In organizing caregiving arrangements, think about the number of caregivers you would like to have. Some patients feel comfortable with many people, drawing support from visits of friends and relatives, whereas others prefer to see only few close relatives. One patient described her caregiving arrangement as follows:

I had four caregivers--my parents, my boyfriend and my cousin. One of my parents or my cousin would generally spend part of the morning and early afternoon with me and then my boyfriend would arrive in the early evening and spend the night in the room on a folding camping cot he bought to use in the hospital. He would generally stay until the doctors finished their rounds in the morning. Having him there during the morning rounds was very helpful because he would bring up issues and questions that I would forget to ask. Also it gave me the opportunity to discuss the medical issues with him and make sure that we both heard the same things. This system worked very well as it meant that no one caregiver was overburdened. Having different people was also great because I got a different kind of support from each of them. At times, though, having four caregivers was a little excessive as I felt pressured to see them all and give each of them equal time and attention.

Another patient writes:

There were several instances when one of my caregivers thought they might have a cold. Knowing that there were other people there to take their place was comforting for all of us.

Considerations in Selecting a Caregiver
The most important consideration in selecting a caregiver is to make sure that your primary caregiver is someone who cares deeply for you and is someone you feel comfortable with. Other things you may wish to consider include whether or not the caregiver will feel comfortable in the hospital environment. It may be useful to think of caregivers with complementary skills. One caregiver may be better at listening and giving emotional support whereas another may be good at assisting in organizational tasks and helping with medical care. Do not be concerned if your caregiver is unfamiliar with some of the tasks he or she will be required to do. Most transplant units have workshops to train caregivers in necessary skills and are also able to provide additional help with certain tasks for those who need it.

Likely Responsibilities of a Caregiver During and Post Transplant
The responsibilities of the caregiver may include the following:

• Providing emotional support
• Providing physical care during and post-hospitalization
  • care of the central line
  • helping the patient with the administration of oral medications
  • recording the medications taken
  • giving intravenous fluids and medications using a pump device
  • identifying changes in the patient’s condition
  • obtaining medical care if needed
  • reporting symptoms to health care staff
• Gathering information
• Keeping family members and friends up-to-date about the patient’s condition
• Monitoring the number of visitors
• Maintaining a clean home environment after hospitalization
• Preparing food
• Providing transportation to and from the hospital for follow-up care

What to Take With You To The Hospital
Bring whatever comes to mind, taking into consideration your hobbies and activities. Keep in mind that you will generally have less energy than usual, and it may, at times, be difficult to concentrate on doing all your usual activities. The following section provides a list of items that various patients have recommended to bring to the hospital.

• Answering machine--Having an answering machine is extremely useful as it allows you to screen calls while resting. It also enables you to leave a daily message with an update of your condition for concerned friends and relatives who call in.
• An extra phone for caregivers and guests--During the time that your counts are low and you are vulnerable to infection it is nice to use your own personal phone and have guests use a separate one. In this way you are secure in the knowledge that the phone you are using is always clean.
• Address book and telephone numbers
• Favorite pictures and photographs to make the room feel comfortable and familiar
• Comfortable shirts and sweat pants--It is good to get materials that can be easily washed and put in the dryer. Also make sure to bring some warm button-down overshirts as it is fairly common to feel cold during the period of immuno-suppression even when the environment is warm. Button-down shirts will provide easy access to your central line, which is a small flexible tube in your chest that will be used to administer blood products and medications.
• Front buttoning pajamas (rather than nightgowns), as they allow you more modesty and provide easier access to your central line
• Comfortable walking shoes (Birkenstocks are great!) or slippers
• Many warm comfortable socks
• Portable PC computer to communicate with relatives, friends or work associates. Check with your transplant center to see if portable computers are permitted in the hospital room.
• Art materials (paints, needlework, knitting)
• Puzzles and games (scrabble, backgammon, crossword puzzles)
• Hats, scarves, wigs, turbans--even if you end up loving your bald head, it is nice to have some cozy warm covering.
• Something to make you laugh, such as a funny book or wig
• A tape deck or CD player with music or relaxation tapes you enjoy
• Good books or magazines--Books that can be read aloud by a caregiver are fun. Magazines and poetry books are also good options as they can be read at various intervals and do not require much concentration and long term memory.
• Paper, cards and pens to write letters
• A notebook--to jot down your feelings and experiences. Or use the notebook as a place to write notes to your family, taking it back and forth between the hospital and home as a place to exchange messages.
• Pre-addressed stamped envelopes to send home, particularly if you have small children
• A musical instrument for those who like to play music
• A camera

One survivor prepared for her transplant by creating a “chain of love” in the following manner:

In preparing for my hospital stay for my bone marrow transplant, I was concerned that there would be people that visited me that I would not remember had come. Also I knew that it would be helpful to me to have a constant reminder of all those who were praying for me and thinking of me. So, before my admission, I precut strips of multi-colored construction paper and got together a basket of markers. I set this in my room under a poster that instructed my visitors to write me a little note on a strip of construction paper, sign it, date it and staple it onto my growing chain of links. As my chain of support and love grew each day, so did my stem cells. On discharge day, my chain almost circled my entire room. Today, my links are carefully cut apart and compiled in a book which serves as a memoir of the beginning of my life as a cancer survivor.

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