Hospital stays can be long and stressful for bone marrow, stem cell, and cord blood transplant patients and their families. According to Seattle Children’s Hospital, patients are often there “for months at a time and far from the comforts of home” and “to make matters worse, these patients often need to be in isolation due to their compromised immune systems, cutting them off from the social support that can be a lifeline during a long course of treatment.”
But sometimes, caring staff at transplant centers around the country are able to bring a little joy during long courses of treatment. Seattle Children’s Hospital and Emory University Hospital are two recent examples. In Seattle, the staff called on Facebook fans to help bring a world of cats to a young transplant patient separated from her own pet for more than a month. At Emory, the staff, patients, and families are feeling the Olympic spirit as they participate in games such as “hula hoop contests, bedpan shuffleboard and wheelchair races.”
As Dr. Amelia Langston, Medical Director of the Emory Bone Marrow and Stem Cell Transplant Center, puts it, “people come in here and they are very sick and they stay for a long time. If we can lighten things up a little bit, if we can make it a little more fun for them, if we can make it a little more fun for the staff who take care of these people, day after day, sometimes for weeks or months at a time, then it’s a good thing.”
Check out Seattle’s “Cat Immersion Project” and read more about it here.
Check out Emory’s Hoola Hoop Competitions and read more about it here.
When we reported to work today, we followed the regular routine which includes checking the voice mail. This morning, we had a message from a transplant center coordinator reaching out for help on behalf of one of her patients.
We have a patient who…basically, we have put his transplant on hold for a few of weeks because we have been trying to find housing for him. He cannot afford it. He does not have any money and his insurance does not have a travel and lodging benefit, and we don’t have any means for any kind of free housing here for him. So I called [another organization]. They don’t have any grants that would be available for me to apply for him now to help with post-transplant housing, but they referred me to you. They said that The Bone Marrow Foundation has grants up to $1,000 that patients can get if approved. And that would be…[sigh]…that would actually enable him to be able to get his transplant, otherwise he won’t be able to do that.
After a bone marrow or stem cell transplant, doctors must carefully monitor the patient, often requiring weekly follow-up appointments. The prevention of post-transplant infection is a major concern as the patient’s immune system needs to regain functionality. (In the case of allogeneic transplant, the immune system has been suppressed in order to reduce the risk that the donated cells will be rejected.) The cost of weeks or months of clean housing near the transplant center can be a stumbling block that prevents a patient from receiving the procedure needed to save his or her life.
Assistance with housing expenses is one of the most common requests made of The Bone Marrow Foundation’s Patient Aid Program. You can help the Foundation assist more patients in need of assistance with housing and other transplant related expenses by clicking here.
Ask the Expert is The Bone Marrow Foundation’s question and answer service which allows patients and their families to privately, via e-mail, ask questions of medical professionals about bone marrow or stem cell transplantation (BMT/SCT).
One of the most common requests submitted to Ask the Expert is for help choosing “the best” transplant center. According to one expert, “there is no one answer to this question.” Another medical professional stated, “there is no ‘best’ center,” but went on to explain that there are “things to consider when you make a choice.”
As the expert said, there are a number of considerations that should affect this decision (see the list below). Doing some research is worthwhile, starting with the patient’s doctor. Some registries provide a list of transplant centers. Talking with people who have had a BMT/SCT about their experience can help identify what qualities to look for in a hospital. It is also a good idea to speak with transplant coordinators, nurses, or doctors at the center(s) being considered to get a sense of their capabilities. If possible, visit the treatment center prior to admission.
In the past, people who needed a BMT/SCT had few choices about where they would go for the transplant. Today, about 15,000 BMT/SCTs are done yearly, at nearly 300 centers in the U.S. and Canada. As a result, patients have more choices available to them and they can choose the transplant center that best fits their needs.
Issues to Consider When Choosing a BMT/SCT Center
- Transplant Center
- Years of experience performing transplants
- Number of transplants peformed
- Type of transplants performed
- Treatment plan protocol: research or standard therapy
- Success rate for your disease
- FACT accredited: The Foundation for the Accreditation of Cellular Therapy (FACT) promotes quality medical and laboratory practice of cellular therapy through its peer-developed standards and voluntary inspection and accreditation program
- Transplant Team Support
- BMT/SCT physician training and type of specialty training
- Experienced nursing team
- Nurse-to-patient ratio
- Availability and quality of psychosocial support services
- Availability of other healthcare team members
- Financial Considerations
- Cost of treatment
- Experience in dealing with insurance companies
- Financial assistance services
- Insurance contract rates for BMT/SCT
- Long-Term Follow-Up
- Support for your referring physician
- Availability to answer your questions
- Other Considerations
- For children, pediatric specialization and programs for children
- Methods of identifying potential donors
- Proximity to home (when you have a choice)