No matter where you are in the transplant process, you will not have to face your concerns alone. The Columbia University Medical Center transplant team recognizes that living with a heart transplant affects your lifestyle in many ways. The team members work together to help you resume many of your former activities and become involved with new ones.
The social worker is an important member of the transplant team for patients and their families both before, during, and after the operation. Your transplant social worker will counsel you and your family and provide a variety of helpful resources. He or she will help you understand and cope with the basic problems associated with your illness, such as the challenges of paying for your medical bills, finding reliable transportation to and from the hospital, referrals for re-employment services, and help with caring for children or other dependent family members. The social worker also collaborates with the clinical healthcare team to arrange a safe and satisfactory discharge plan that may involve home nursing visits and in-home care, if needed.
Social Supports: Family and Friends
It's important to identify who among the patient's network of family and friends, is available to provide consistent, long-term emotional and physical support.
There needs to be at least one individual who has a stable, supportive relationship with the patient and who is willing to provide for the patient's physical and emotional needs during the entire transplantation process, including evaluation, hospitalization, surgery, and post-surgical adjustment to a new heart and a new life.
Financial Support: Insurance
Obtaining adequate health insurance is of primary importance. This coverage should include a good prescription plan. Without one, most candidates cannot afford the expected and unpredictable expenses of heart transplantation.
The social worker helps the candidate identify and resolve any underlying stress that may impact a successful heart transplant. Candidate's lives can frequently become problematic in the areas of family relationships, emotional equilibrium, and financial stability, all as a result of chronic illness.
Crisis is unfortunately familiar to those with progressive heart failure, and the social worker can intervene to help resolve the medical, emotional, spiritual, or financial factors contributing to the crisis situation.
Educational and Support Groups
The state of your health influences your life completely. End-stage heart disease affects not only your physical feelings, but your mental and emotional states, and those of your family and other loved ones too. Not only complex surgical and medical issues must be faced, but psychological, financial and social ones as well.
Following your transplant operation, as you face recovery and integration back into your normal life, new demands on you and your family in caring for your return to health may also bring new stresses and challenges. So that you and your family members learn about the transplant experience and all it entails, Columbia University Medical Center sponsors a series of educational and support activities.
The Heart and Lung Transplant Educational and Support Group meets Thursday afternoons from 4:00 to 6:00 p.m. in the Clark Conference Center, located on the first floor of the Milstein Hospital Building, across from the Admitting Office. These group sessions are designed to educate both candidates waiting for transplantation and newly transplanted patients and their families on the care required leading up to, during, and following transplantation.
Each session is composed of two parts. First, the educational hour includes discussions with various members of the transplantation team. The second hour is devoted to the support component, allowing individuals, both pre- and post-transplant, to share information, relate experiences, and derive emotional support from their peers in the transplant experience.
We strongly believe that being educated about organ transplantation is a critical tool you and your family will need in caring for the new you. The support you gain and give to others is also invaluable. We therefore require all patients waiting for heart or lung transplantation to attend a four-course program. One course from the program is offered the first Thursday of each month. A four-month commitment of one day per month is necessary to complete this requirement. The courses include:
- "Infection and Rejection" — dealing with issues of organ rejection, immuno- suppression and susceptibility to infection that follow transplantation.
- "Medications" — a primer on the medications used to control rejection and ensure your optimal health after transplantation.
- "Exercise after Transplantation" — explores the importance of physical activity in restoring and maintaining your health.
- "What to Do When the Call Comes" — prepares you and your family for the moment when you receive news that your new organ has been found and the urgent activities that follow. This session includes a tour of the Open Heart Recovery ICU.
These four classes provide the basic and essential information you need before undergoing transplantation. If for any reason you cannot attend all four classes, please discuss this with your transplant coordinator. Additional classes address many transplant-related issues and will help to further prepare you for the transplantation experience. Questions about the program may be directed to the transplant social worker at 212.305.5931.
Paying For Your Transplant
The NYPH/Columbia Cardiac Transplantation Program is committed to caring for all patients, regardless of financial status, and participates with many insurance plans. Regional and national insurers recognize our program both for its excellence and cost effectiveness. While the hospital's contracting professionals continually add new insurance carriers, the program's financial counselor works one-on-one with families to negotiate coverage with their insurers, or to develop case rates for those who must go out of network for our services.
While your social worker will have knowledge about government funding opportunities and disability programs, financial issues are only part of his or her responsibilities. The team's financial coordinator offers you detailed knowledge of financial support options and hospital billing methods. Your social worker and financial coordinator work together with you to help determine how you can best afford the immediate and future costs of transplantation.
Transplant costs include charges for evaluation and testing to determine eligibility, the cost of organ procurement and the surgery itself, and follow-up care expenses such as rehabilitation services and occupational therapy, lab tests and the medications required for the rest of your life. And, if you must travel any distance to receive your transplant, the costs of transportation, food and lodging will also need to be covered. In addition, there may be lost earnings to consider if you or your spouse's employer does not pay for time spent away from work.
Few patients are able to pay all the costs associated with transplantation from a single source. For example, you may be able to finance the transplant procedure itself through your medical insurance coverage and pay for other expenses by drawing from personal assets. Most likely, you will have to rely on a combination of funding sources. The most common funding sources are medical insurance coverage, extended insurance coverage through COBRA, Medicare, governmental funding programs like CHAMPUS (for armed services personnel and their families), charitable and advocacy organizations and fund raising campaigns.
It is vital for every individual facing transplantation to consider the extent and limits of their medical coverage. It is your responsibility to understand your coverage limits, especially with regard to the lifelong follow-up care and immunosuppression medications you will require. These can be the largest out-of-pocket expenses for many patients.
For all these reasons, you need to be aware of any changes in your insurance coverage. If and when such changes occur, it is critical that you notify your social worker and financial coordinator.