Emotional and Family Support
The care and challenges related to your illness and having a transplant raises its own set of emotional and coping issues - for you, your loved ones, caregiver(s) and friends.
Our behavioral health team, which includes a transplant psychologist, social workers and a psychiatrist if needed, has created a special program to address a unique circle of need.
We help you understand the physical, emotional and financial impact of your disease and the impact on your family, including children. Together we develop strategies to handle the many special challenges associated with your illness, transplant surgery and care.
Here are some of the services and programs we offer:
- Managing the stress of illness, transplantation, or transplant caregiving
- Improving quality of life before and after transplant
- Evaluation and treatment of depression and anxiety
- Pain management
- Smoking cessation
- Weight loss management
- Alcohol and drug relapse prevention
- Sexual dysfunction
- Enhancing support system stability
- Concerns about living donation
- Accessing community supports and resources
Your Social Worker and Psychologist
Every patient we evaluate for transplantation meets with a social worker so we can discuss your individual needs:
- Your history, including your previous experience with illness and taking medications
- Any mental health or substance abuse issues that we may need to address
- Your insurance options and financial situation, with our financial coordinator, to help you prepare for your transplant
- Community resources if you need transportation and/or home services
We encourage you to invite a family member or caregiver to all appointments.
While the psychologist may not meet every patient at the time of transplant evaluation, you should know that you can schedule an appointment with him at any time throughout the transplant process. He has specialized treatment programs to help our transplant patients cope with chronic illness, reduce depression and anxiety, stop smoking, lose weight, prevent relapse to substance abuse, and improve their quality of life. He provides these services to patients both before and after transplantation. He also has expertise in helping couples work through the stress of chronic illness and transplantation.
Your social worker and psychologist will also be available to help facilitate discussion between you and your loved ones about a variety of topics including treatment options such as living donation if you need a combined pancreas and kidney transplant. They can also help you set personal goals and identify any potential barriers to achieving better health and quality of life.
Positive Outlook, Positive Outcome
Our behavioral health program helps enhance care quality and patient outcomes by supporting transplant recipients and living donors, and their families, before, during and after transplantation. Studies show that emotional health and well-being play an important role in recovery and improved physical health. We know that factors such as depression and anxiety can impact quality of life as well as survival after transplantation. Patients with untreated depression are at higher risk of relapsing to substance abuse, not taking their medications, and not attending to their physical health needs.
Stress is part of life. But too much stress - for too long - is not good for your emotional or physical health. One of the keys to living a long and healthy life is to find your own personal ways for dealing with stress. The following are some ideas for lowering your stress level:
- Maintain a healthy lifestyle - eat healthy foods, exercise and get enough sleep and rest. Write down the activities that relax you, such as taking a bath, going for a walk, or listening to a relaxation tape. When you feel stressed, take a break and do one of these things.
- Build a support system of family and friends who will be there for you in good times and bad. When you feel overwhelmed, talk to someone about it.
- Identify the situations that generate stress for you. Do what you can to gain more control over these situations.
- Accept that there are some things you cannot change, and don't waste time and energy worrying about them.
- Accept that there often are not enough hours in the day to accomplish everything you want to do.
- Realize that everything does not have to be done perfectly.
- Reassure yourself that you are doing the very best that you can.
- If you feel stressed on a regular basis, or if stress is difficult to deal with, you may benefit from talking to a mental health professional. Ask your transplant team or primary care physician for a referral.
Caregivers are a very important part of the success of transplantation. A caregiver can be a spouse, adult child, a family member, or a close friend. Having a caregiver is important for several reasons because they:
- Help to monitor your health
- Help you meet basic living needs, like cooking, bathing, and simply getting around the house
- Drive you to and from clinic appointments
- Help keep track of your medications and when to take them
- Communicate with the transplant healthcare team
- Assist with taking care of your children
- Help make healthcare decisions for you
For these reasons, it's important for the caregiver to meet the transplant team and to be an active part of the whole transplant experience. Caregivers also should learn as much as they can about the transplant process.
We recognize that caregiving can be very time consuming and stressful. Caregivers experience their own unique form of stress as they balance the demands of their loved one's illness and other life responsibilities. Many of the strategies described above can be just as useful for caregivers to prevent and better manage stress in their lives. We encourage caregivers to talk more with their social worker and/or psychologist about any concerns or worries. We can work with you to help you find the resources you need. For example, many caregivers benefit from joining caregiver support groups and participating in their own mental health treatment.
Web Sites to Support Caregivers
National Center on Caregiving
A program of Family Caregiver Alliance, the NCC helps develop high-quality and cost-effective programs and policies for caregivers in every state, and serves to unite public policy, research and services.
The Well Spouse Association
Well Spouse helps support husbands, wives and partners of the chronically ill and/or disabled. There are Well Spouse support groups in many areas of the country, including Massachusetts, offering wide-ranging caregiver information on a variety of practical issues. In support groups and on the web, members share thoughts and feelings in a non-judgmental environment with those facing similar circumstances.
The Caregivers Marketplace
This web site provides rebates, discounts and information for caregivers.
Caregiver Media Group
The Caregiver Media Group provides support, information and guidance for family and professional caregivers. Caregivers can access topic-specific newsletters, back issue articles from Today's Caregiver magazine, online discussion lists, chat rooms and an online store.
This web site provides useful resources for caregivers, has a chat room and message board, and has a newsletter.
National Family Caregivers Association
A grassroots organization, NFCA supports, educates and empowers those who care for chronically ill, disabled or aged loved ones. NFCA addresses the common concerns and needs of all family caregivers, regardless of diagnoses, relationships or life stages.
Your disease and transplant impact your family and your friends in different ways than they impact you. Your partner or family members probably have concerns about your health, your relationships, your children and your finances. They may do things to "help" that are not helpful at all because they do not know what to do. Try to communicate openly with your partner or the family members who are most involved in your care. Tell them when you need their help, when you are afraid, when you need them close to you, and when you need some time to yourself. Knowing your own needs and helping others to understand them will make things better for all. Your social worker and psychologist can help your family through issues that may arise and help you talk with each other about your concerns. They have experience working with couples and families under stress.
Talking to your Children
If you have children you probably are very concerned about how your illness is affecting them. They are concerned about you, too. Here is some advice about what to say to your children:
- Keep children informed about what is happening. Children understand things and communicate differently at various developmental stages. Your social worker and psychologist can share insight and suggestions.
- Keep things as routine as possible. If you can, let them continue after-school activities such as sports and time with friends. Reach out to other friends and family who may be able to assist you.
- When things cannot be "routine," let your children know the plan in advance. For instance, tell them who will take care of them while you are in the hospital.
- Spend time with your children. Doing things together like watching television, reading, or simply talking will help them understand that you are still their parent who loves them and is there for them.
- Include the children in the transplant process. Leaving them out may make them feel unwanted and not needed.
- Be careful not to ask too much of teenagers. They certainly can pick up more of the household responsibilities, but not at the expense of spending time with their friends and participating in the activities they enjoy.
- Recognize that some "bad" behaviors may be the result of a child's fears about their parent's illness.
Your social worker and psychologist are available to meet with you and your family to discuss transplant concerns. They also can suggest books that have helped other families coping with illness.
Taking your Medications
We can offer special strategies to help you remember to take your medicine; to plan so that you do not run out; and to pack so that you have the medications you need if you are traveling. For instance, we will work with you and your family to create reminder cues at home so you remember to take your medicines at the same time each day. Many patients use pillboxes, calendars, notebooks, alarm clocks, and signs to help remember to take their medications. The transplant social worker, psychologist, pharmacist, or nurse can help you decide which system(s) works best for you.
Quality of Life
As part of our behavioral health program, we ask every patient to tell us about their quality of life, something that our blood tests and medical tests can't show us. This information helps us continually refine our care to be sure people have the best possible experience from having undergone a transplant.
When you have a chronic medical condition, there is a tendency to define your quality of life in terms of what you can or cannot do physically. If you define your quality of life only in physical terms, you may feel that there is nothing you can do to improve your quality of life. But there is more to quality of life than physical well-being. Relationships with others, spirituality, leisure-time activities, and work, among other things, contribute to your overall contentment and happiness. While waiting for a transplant or recovering from one, our expert team will help to improve your overall quality of life.
Alcohol and drug abuse can impact your physical health and compromise your transplant outcomes. That is why patients must meet our substance abuse policy requirements before receiving a pancreas transplant. If you have a history of alcohol or drug abuse, you must be abstinent for at least three months and participate in an alcohol or drug treatment program. We may also require that you have random toxicology screens so we can document your success in treatment.
To help patients with a substance abuse history, we have developed specific treatment programs here in the Transplant Center. These treatment programs are designed to help prevent relapse to substance abuse once you have quit drinking or using drugs. If you are unable to take advantage of the treatment programs here in the Transplant Center, we will help you find appropriate providers in your local community.
It is also important for you to stop smoking. Nicotine is highly addictive and smoking can cause many health problems. As a transplant recipient, smoking might put you at even higher risk for certain health problems after transplant. Therefore, we encourage - and sometimes require - transplant patients to quit smoking.
To help patients quit smoking, we offer a short-term treatment program that can be done on an individual basis or in a small group of transplant patients. We use treatment strategies that have been proven to be the most effective way to quit smoking - and to stay quit.
Additional Treatment Programs
We offer a number of other treatment programs. Ask your transplant physician, nurse, social worker or psychologist if you would like more information on the following:
- Pain management
- Weight loss management
- Sexual dysfunction
- Enhancing support system stability
Reaching Out to Living Donors
Some patients may need a combined pancreas and kidney transplant. We are especially proud of the compassionate care and support we offer living kidney donors and their families. A dedicated nurse practitioner is devoted solely to organizing care and services for our living donors and their loved ones.
As a transplant center, we are also proud of the leadership role we have taken at the national level to help increase organ donation and expand living donation. We have created a novel home-based intervention program to help increase live kidney donation and, in particular, to help reduce racial disparity in this area. For patients who are interested, we will make a "house call" and spend time talking to you and your family about living donor kidney transplantation and living donation. We have found this approach to be very successful in reaching underserved patients, such as African Americans, who have been disadvantaged by low rates of living kidney donation.
Click here for more information about the advantages of living kidney donation and discussing living donation with family and friends.
Writing to your Donor Family
The decision to write to your donor family is very personal. Sometimes, transplant recipients choose to write to their donor family to express their gratitude. In response, many donor families have said that a card or personal note from the recipient(s) of their loved one's organs and/or tissues offers them comfort and consolation. The New England Organ Bank (NEOB) supports written correspondence between transplant recipients and donor families. All correspondence is anonymous, and identifies are kept confidential.
If you choose to send a card or a letter, you may find some of the following suggestions helpful:
- Talk about yourself
- Include your first name if you choose
- Discuss your job, occupation, hobbies, or interests
- To talk about your family
- Since the religion of the donor's family is unknown, please consider this if you are including religious comments
- Talk about your transplant experience
- Recognize the donor family and thank them for their gift
- Describe how long you waited for a transplant and what the wait was like for you and your family
- Explain how the transplant has improved your health and changed your life
- Mention activities that you can now participate in, such as birthday celebrations, family weddings, starting a new job or welcoming a new grandchild
In closing your note, again, you may sign your first name if you choose. The NEOB requires that you
- Do not reveal your address, city or telephone number
- Do not reveal the name or location of your transplant center
- Do not reveal the name of your physician
Place your card or letter in an unsealed envelope. Include in the envelope or on a separate piece of paper your full name and the date of the transplant. Place these items in another envelope and mail them to your transplant coordinator or directly to the NEOB at the following address: New England Organ Bank, One Gateway Center, Newton, MA 02158.
Forwarding May Take Weeks
The NEOB will review your card or letter to ensure confidentiality and then notify your donor family. If the family is ready to receive your correspondence, the NEOB will forward your letter. It may take a few weeks after you have mailed your correspondence for your donor family to receive it.
May Not Hear Back
You may or may not receive a response from your donor family. Some donor families have said that writing about their loved ones and their decision to donate helps them in their grieving process. Other donor families, even though they are comfortable with their decision to donate, prefer privacy and choose not to write back. Remember the donor family may still be coping with the loss of their loved one and individuals manage grief in different ways. While you may be celebrating the anniversary of your transplant, it is also the anniversary of someone else's loss. Thank you for understanding the donor family's position, and for communicating in a sensitive manner.
If you have any questions about the communication process, or you wish to discuss your message with your social worker at the Transplant Center, please call. Many patients find it useful to talk with their social worker about this process and to even share some of their writing or actual letter.
Additional Supports and Resources
Your social worker, psychologist and transplant coordinator will also provide you with additional written educational materials and transplant-related web sites to help you learn more about the transplant process. It can also be helpful to meet other transplant recipients. Your transplant coordinator or social worker can introduce you to some of our patients and families.
Please ask your social worker or nurse coordinator if you would like to meet other patients and families at BIDMC who have received a pancreas transplant. Our patients are eager to share their experience and support, and we are happy to make that connection for you. Also, please stay tuned for future support group programs we plan to offer to our pancreas and kidney transplant patients.
Every person who sees a social worker or psychologist has a different set of needs. Do not be embarrassed or afraid to bring up any topic with your social worker, transplant doctor or nurse. We are all here to help, with experience and access to resources, to make life easier for you, your family and your loved ones.
Spiritual Needs and Support
Beth Israel Deaconess Medical Center has a Pastoral Care staff onsite, including a Rabbi, Catholic priest and Protestant chaplain. There is also a network of spiritual advisors representing other faiths in the community who are available to you for consultation. Additionally, your own religious or spiritual community can be another source of comfort and support.