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  • 8. How much does a transplant cost? And how will I pay for all of this? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    someone with expertise in the insurance field Consider getting second opinions at transplant centers covered by your insurance Costs may vary depending on your treatment center Although the center may not be able to quote you an exact dollar amount for your transplant you can request a general estimate for the cost of your transplant and what your insurance plan will pay to determine your out of pocket expenses This is especially important if your insurance coverage is limited It is difficult to predict your expenses after the transplant Much will depend on your recovery time which may range from six months to a year or longer Your insurance company will probably cover testing and may also cover follow up visits However there are many out of pocket expenses Medications can be very costly especially if you do not have prescription coverage Ask about your coverage prior to transplant Be the Match offers a free financial guide for transplant patients called Mapping the Maze This guide can help you plan for the costs of transplant See Resource Listing Financial Aid There are some places you can turn to for help with transplant expenses While there are no agencies or organizations that will absorb the full cost of a transplant some relief is possible Ask a social worker at your transplant center to direct you to appropriate resources and organizations Check with nonprofit organizations affiliated with your disease Certain organizations help cover mileage lodging and even some prescriptions See the Resource Listing for organizations that help with finances while keeping in mind that the aid the organizations provide may vary from year to year and may be restricted geographically Being persistent and resourceful in finding resources can be very helpful Some patients contact different airlines to see if they can get discounted flights Others call local relief agencies affiliated with their religion and yet others may find financial help through their local social services agencies If the transplant is for a child under the age of 18 contact your state department of health Many states have Children s Health Care Services which provide substantial financial aid or insurance coverage regardless of your income Sometimes monthly supplemental payments might be required from you If insurance coverage is minimal for your transplant you may need to raise funds to help pay for your treatment It is important to begin fundraising efforts early There are several nonprofit organizations that specialize in helping patients raise funds These organizations help arrange fundraisers and maintain accounts to which tax deductible contributions can be made on a patient s behalf Another benefit of working with such groups is that they may provide encouragement and emotional support Also check with civic service or religious groups for help Please call the nbmtLINK at 800 LINK BMT 800 546 5268 or e mail info nbmtlink org for additional information If you need a transplant and have no resources to cover it you may be eligible to enroll in a clinical trial

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question8.html (2015-03-27)
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  • 9. Will my insurance cover the transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    part of an approved clinical trial Be sure to comply with the time requirements Ask for the appeal in writing and send it certified mail with return receipt requested See if your doctor will supply medical information that supports the treatment and include it with the appeal If there is notice of an appeal and you cannot get a quick reversal continue to follow the appeal process At this point your doctor and transplant center should also be providing the insurer with scientific support information and include a listing of other institutions now providing this procedure Be persistent The paper trail between your transplant center and your health insurer may become very important if coverage is denied Organize your own paper trail file If your health insurance is paid through your employer ask if they can and will make efforts to help Sometimes the employer may pay for treatment rather than work with the insurer At other times the employer can put pressure on the insurer particularly if the employer spends a lot on health benefit coverage At some point it may be advisable to consult an attorney The attorney will require information to determine if the insurer is discriminating in its policies It is possible in some areas that laws protecting disabled persons may apply The definition of who is disabled or handicapped could cover the patient in some cases Should you require the help of an attorney consult one who specializes in insurance denials Individuals at insurance companies generally want to assist you Case managers for example can be very helpful to patients Often medical directors who are physicians make the decisions about what would be the best care Approaching them as people who want to help is the best way to begin There are also government agencies at the federal level such as the Equal Employment Opportunity Commission and at the state level such as the Commission on Human Rights which are designed to help the average citizen These agencies are user friendly which means that you can personally go to the agency and speak to an investigator about your problem Sometimes they might even be willing to file suit for you Medicare and Medicaid If you are a Medicare or Medicaid patient contact the treatment center s social worker or patient financial services to discuss your options They will work with you to understand what coverage is offered If you are rejected coverage ask to be informed of your appeal rights You have the right to appeal the denial of a service that is medically necessary If you have Medicare make sure the transplant is conducted in a Medicare friendly facility Call 800 MEDICARE if you have questions about your coverage or contact the Medicare Rights Center See Resource Listing Navigating health insurance can be a complex process and you will likely have specific questions about your coverage If your questions are outside the scope of your treatment center or if you are not getting the

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question9.html (2015-03-27)
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  • 10. How do I choose a transplant center? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    moderately sized transplant center does around 20 transplants per year Are you going to have the same staff treating you throughout the transplant Most transplant centers have doctors nurse practitioners physician assistants etc who rotate on a regular basis Will you have access to a social worker or counselor during the transplant What is the average amount of time that the nurses have worked in the BMT unit How experienced are the physicians at the center and are there specialists such as pulmonary and infectious diseases available to handle complications should they arise Is there a support group for patients or their families What is the survival rate for patients with your condition in your age group undergoing your type of transplant Could someone who has undergone a transplant at the center contact you to tell you about their experience What is the visitor policy How flexible is it Having your caregiver stay at the hospital overnight can be very comforting Are children allowed to visit What living arrangements can be made for you and your family if you need to move away from your home to the transplant center How much can your family expect to pay for living expenses Can the center provide any assistance to defray some of the family s expenses 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 the oncologists near your home have very little experience with transplants 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 In addition you may want to make a list of questions that are personally important to you For example Will I be allowed to go outside walk in the halls or will I be confined to my room Can the hospital accommodate my dietary needs Can I ask for food at any time of the day or do I have to order it a day in advance Am I allowed to eat raw fruits and vegetables Sometimes certain foods are restricted to reduce the risk of infection after transplant Having a flexible eating schedule can be helpful as you may be nauseated at times and may not want to eat during conventional mealtimes There are distinct advantages to having the transplant at an experienced medical center with an excellent track record If there is no center near your home or if you have concerns about the reported outcomes or the degree of experience at the center near you you might consider moving your care to a larger more well regarded center farther from home Weighing the advantages of staying close to home where you have an extensive support network versus moving to a larger transplant center is difficult Be the Match has a Transplant Center Access Directory which has information about all U S transplant centers that perform allogeneic

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question10.html (2015-03-27)
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  • 11. How do I tell my children about my transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    and answer with reassurance and honesty Allow your child to express emotions and help him her to keep a positive attitude Some cancer centers have a Pediatric Social Worker or Child Life Specialist with whom you can consult These professionals have special training in age appropriate communication with children and in family dynamics You may also find it helpful to consult with the social worker at your center and review written materials about communicating with your child Some useful resources about communicating with your child can be found in the Resource Listing Back to Frequently Asked Questions Main page Acknowledgements Introduction 1 What diseases are typically treated with bone marrow stem cell transplant 2 How can I decide if a transplant is right for me or my child 3 What is a bone marrow stem cell transplant 4 How are the stem cells used in transplant collected 5 How does the search for a donor get started 6 How does one become a bone marrow donor or donate cord blood 7 Where can I find information about survival rates 8 How much does a transplant cost And how will I pay for all of this 9 Will my insurance cover

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question11.html (2015-03-27)
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  • 12. How do I tell my child about his/her transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    feel sick and throw up I want you to know that I will always be here with you and that if you feel sick I will hold you and hug you We will do this together even though sometimes it will be hard And when you are done with the chemotherapy we will have a little celebration and some treats It is sometimes helpful to describe the transplant as a second birthday and many children enjoy looking forward to the party after the chemotherapy and or radiation Many pediatric centers have creative ways to encourage children during this process Help your child to understand that the transplant is a way to get better and get back to playing with friends and being at school Developing a plan to have a caregiver with the child throughout the transplant is important Most of the time family members and or friends will need to take shifts as this may be too tiring for one individual Helping the child to know that there will be someone there with them and that they are not alone provides comfort For older children finding ways to communicate with friends through the Internet or phone may be useful Finally many children will mirror the feelings that they perceive from those closest to them As scary as it is to think of your child undergoing a transplant it is important to convey to them that you will be supporting them throughout the process and that this is something that you all have the strength to manage Try to be hopeful yet open to all feelings that your child may have and may want to discuss This may mean dealing compassionately and with understanding to anger sadness frustration and questions about life and death These are all normal responses to

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question12.html (2015-03-27)
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  • 13. What can I do to prepare myself mentally, physically, and emotionally for the transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    physical level this may mean eating a healthy 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 Put together a notebook or binder to record information from your health care 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 Discussions between hospital staff and family will be helpful Also 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 Back to Frequently Asked Questions Main page Acknowledgements Introduction 1 What diseases are typically treated with bone marrow stem cell transplant 2 How can I decide if a transplant is right for me or my child 3 What is a bone marrow stem cell transplant 4 How are the stem cells used in transplant collected 5 How does the search for a donor get started 6 How does one become a bone marrow donor or donate cord blood 7 Where can I find information about survival rates 8 How much does a

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question13.html (2015-03-27)
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  • 14. What can I expect before and during the transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    ll be susceptible to infection During this time you ll have to be very vigilant about guarding against bacterial viral and fungal infections This entails staying away from sick people washing hands frequently keeping good oral hygiene with frequent mouth rinses and eating food that has been meticulously prepared The bone marrow stem cell transplant is a surprisingly simple procedure very much like a blood transfusion On the day of transplant you ll receive the stem cells that were taken from either you or a donor through an IV intravenous just like any blood product or medication It takes one to two hours for the infusion You will be monitored frequently for any reaction to the infusion but in most cases the process is uneventful In an amazing process stem cells will travel through the bloodstream and migrate to the marrow space in the bone They know exactly where to go The stem cells from the transplant should begin producing life sustaining blood cells in about two to four weeks When peripheral blood stem cells are used this generally occurs somewhat more quickly than with bone marrow or cord blood As your new stem cells establish themselves and start to reproduce engraft your risk of infection will start to go down The time it takes for the new immune system to rebuild itself and become fully functional varies from patient to patient and may take from six months to a year or more As the new immune system becomes established the risk of infection declines Back to Frequently Asked Questions Main page Acknowledgements Introduction 1 What diseases are typically treated with bone marrow stem cell transplant 2 How can I decide if a transplant is right for me or my child 3 What is a bone marrow stem cell transplant

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question14.html (2015-03-27)
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  • 15. What are the emotional considerations while undergoing transplant? - Bone Marrow/Stem Cell Transplant Frequently Asked Questions - Resources and Support - National Bone Marrow Transplant Link
    possible complications Many people find that having the information helps them adjust their expectations and gives them a sense of control A very important part of coping is communicating your needs and preferences to those around you your family and your doctors and nurses Things that may seem obvious to you may not be obvious to others Let people know what you would like what kind of food what kind of schedule what kind of care Ask what your options are and find out what services are available to you Your caregiver or a social worker can also serve as your advocate All transplant centers should have a social worker who can meet with you to discuss your concerns and help you manage your stress Remember to ask for help when you need it Professional counseling can also positively impact your emotional well being Although there are many different ways of coping you might find the following suggestions helpful Acknowledge the full range of your feelings both positive and negative Be honest about how you feel and then begin to plan out first steps in coping with your difficult situation Be kind to yourself Take time for activities that bring you joy Laughter and a good attitude can be powerful sources of support and healing Clearly if you are not feeling well this can be quite a challenge To the extent possible try to incorporate some fun into your days Rent some funny movies or ask friends and family to send you videos Try to incorporate a few things you enjoy into your day Communicate your needs Often people will not know how best to support you unless you tell them Be specific You might want to create a list of tasks that would be helpful Or have a friend coordinate the help that you need If possible try to arrange to have many different caregivers so that the burden is shared and is lighter for everyone Some caregivers may be able to visit in the hospital whereas others can help with rides to and from the doctor as patients are not able to drive on their own for several weeks Focus on the issues that bring meaning to your life your religion spirituality interests or passions Exercise on a daily basis to improve your mood promote health and maintain muscle strength Use guided imagery and meditation to reduce stress See Resource Listing under Alternative Complementary and Integrative Medicine Often patients and families facing a transplant appreciate talking with someone who has been through the transplant experience a BMT survivor or caregiver The National Bone Marrow Transplant Link s Volunteer Peer Support On Call Program links up trained volunteers with patients survivors or caregivers Whether by phone e mail or written correspondence being linked to a peer support volunteer can be very helpful Hearing how someone has coped with a difficult situation can often better prepare you emotionally for your own journey and lets you know that you are not

    Original URL path: http://www.nbmtlink.org/resources_support/faq/faq_question15.html (2015-03-27)
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