Patient Services

The Information You Need

If you're undergoing a transplant, here's where you'll find information about referrals, appointments, evaluations, financial counseling, social work and support groups and help managing medications.

Referrals/Appointments

• For all referrals, please contact Transplant Intake Specialist Christianne Suszynski at (716) 898-4530.
• For appointment scheduling and related questions, please call the Renal Office at (716) 898-4803.

Evaluations

How can I contact ECMC for a kidney or pancreas transplant evaluation?
Contact Christianne Suszynski, Transplant Intake Specialist in the Renal Office at the Erie County Medical Center, at (716) 898-4530. She will obtain some information from you and provide a basic orientation to the transplant program. You will be assigned to a transplant coordinator who will direct your evaluation.

What happens during the transplant evaluation?
Your evaluation will include a review of your medical record, blood work and further testing based on your medical history, cause of kidney disease and age. The evaluation process will also include a medical and surgical evaluation with the transplant-team physicians and surgeons.

How long does it take to complete the evaluation?
The evaluation testing required varies for each individual and is based on his or her specific medical needs. Usually, the evaluation is completed within six to eight weeks, but the time can vary depending on the complexity of your medical problems and your availability to undergo various procedures. ECMC's recommended testing for potential recipients follows the guidelines of the American Society of Transplantation.

How will I know when I have been placed on the transplant waiting list?
Your transplant coordinator will inform you and your nephrologist when you successfully complete your evaluation and are placed on the active waiting list. The waiting list is a local as well as national list. When you are listed, you will be required to have blood drawn every month ("monthly serum"). This blood is sent to the tissue-typing lab and used for compatibility testing when a kidney becomes available for transplant.

Why must I have blood drawn every month after I have been placed on the waiting list?
This blood can be used for compatibility testing within only a month of being drawn, so you will need to have blood redrawn each month. If a fresh sample of your blood is not available, you may not be considered for an available organ.

How long will I be waiting for a transplant?
The national average waiting time is now more than three years. Your blood type, compatibility with potential donors and the availability of organs for transplant may influence the actual time you wait.

Why do I need to be placed on a waiting list?
Currently, more than 90,000 people are waiting for organs (nearly 65,000 are waiting for kidneys). In order to fairly distribute the available organs, a national waiting list has been formed. The United Network for Organ Sharing (UNOS)administers the Organ Procurement and Transplantation Network to ensure fair access to available organs.

Will my health insurance cover my transplant procedures and medications?
As part of your transplant evaluation, you will meet with our financial coordinator to review your insurance coverage and plan for expenses related to the transplant process and your follow-up care.

What if I change or lose my health insurance?
If there is a change in your health insurance, notify your transplant coordinator and the financial coordinator as soon as possible so that your coverage can be updated. The financial coordinator will review your situation with you to create a financial plan for your transplant.

I have a family member/friend who has expressed interest in donating an organ. How do we proceed?
Have this person contact the transplant coordinator who has been assigned to your care. The coordinator will set up the required evaluation and testing for your potential donor. A meeting will be arranged to discuss in detail the risks and benefits of live donor kidney transplantation with potential recipients and donors.

Does your transplant center provide dialysis?
ECMC is a full-service transplant center with dialysis facilities on site.

What kind of medications will I have to take after the transplant? Will I have to take these medications for the rest of my life?
There are several different types of medications that alter the immune system in different ways. Usually, a combination of medications is used in an attempt to balance the beneficial effects (suppression of your body's attack on the "foreign" tissue) with the potential toxic effects of such drugs. Typically, recipients need less medication with time after transplant, but, as of now, it appears that some medications will be needed indefinitely.

Can I go back to work after the transplant? How long after?
Most transplant recipients can return to work about three months after the transplant. The time you will need to wait will depend on your recovery process and the kind of work you do. Jobs that require little physical activity may allow you to return to work sooner, and jobs that are more demanding may require a longer wait.

Will having a transplant restrict my activity?
Initially after the transplant, you will probably be sore and fatigued. Because transplant is major surgery, it will take you a few months to get back to "normal." However, many patients say they feel great a day or two after the operation because the transplanted kidney is better than dialysis in restoring the body's chemical balance. As long as you have an open wound (where the transplanted kidney was placed), you will not be able to go swimming. You will not be allowed to drive for one month after the surgery. Especially during the first three months after transplant, you are at a much higher risk of contracting infections. You will always want to be cautious about coming in close contact with someone who may have a cold or other infection. You will have lifting restrictions indefinitely. After a few months, the amount you are able to lift will increase, but you will always need to be careful about heavy lifting. Your coordinator will review any specific restrictions with you and answer any additional questions you have.

Can I get home care after transplant surgery?
As a general rule, home care for transplant patients and donors is not covered by insurance. Therefore, plans need to be made with family and friends to help with regular household chores such as cooking, doing laundry and light housekeeping. A referral can be offered to a private agency that can provide assistance for an hourly rate.

Will I be eligible for New York State Disability Insurance payments during the time I am not able to work?
The Transplant Department will assist both recipients and donors through the application process.

Is there any resource available to provide transportation for checkups after the surgery for donors or recipients?
No, you must plan (and pay for) your own transportation needs; if this will be a problem for you, please discuss your situation with the financial coordinator.

Should I designate a Health Care Proxy?
It is always a good idea to have a Health Care Proxy to stipulate your wishes for medical care if you are unable to verbally express your wishes. In addition, it is important to discuss your wishes with family members.

What do I do if I have a question that is not answered here?
Contact your transplant coordinator with any additional questions you may have. If you do not yet have a coordinator, contact Christianne Suszynski at (716) 898-4530, and she will direct your call to the appropriate person.

Financial Counseling

During your initial consultation, you will meet with the financial counseling member of our transplant team to discuss your financial coverage for transplantation. The financial coordinator will work with you and your family from the beginning of the evaluation through and after transplantation and will assist you in a number of areas:

• obtaining and discussing with you detailed patient insurance benefit information for all aspects of the transplant process, including outpatient prescription drugs
• advising you on insurance and billing issues and options
• helping obtain all necessary prior authorizations (times when the insurance company must approve a procedure before it happens)
• verifying transplant coverage and other medical benefits and acquiring necessary referrals and authorizations
• monitoring and updating information regarding insurance data, physicians, authorizations and preferred providers
• identifying potential patient out-of-pocket liability (costs that are not covered by your insurance plans) and helping find alternative sources of payment to cover these gaps
• reviewing additional related expenses, including the loss of income due to leave of absence from work, child care, transportation to and from ECMC for you and your support person and any temporary housing expenses associated with being accessible to ECMC

Assessment of Organ Recipients

Evaluations of organ-transplant candidates are made to determine their psychosocial appropriateness and needs. Very important discussions are necessary to plan for care at home (including household duties and transportation needs) after discharge from the hospital. Other concerns addressed include the ability to work, job status and financial status during and after the surgical recovery period, as well as an understanding of the risks and benefits of transplantation. The potential need for individual counseling and more extensive counseling is explored. Of course, we also examine commitment to comply with medical directives (consistent use of medications after transplantation) because nearly one-third of all transplant-rejection episodes can be traced to non-compliance with medications.

Assessment of Potential Organ Donors

Evaluation of potential organ donors includes much of the same information as for the recipient; however, the donor's motivation must be clearly stated and explored. Donors must desire to donate their organ entirely of their own free will, without any outside pressure or coercion.

Referrals

As the needs of the recipient or donor are discovered, various referrals may be made to outside agencies for services such as long-term counseling or Vocational Educational Services (VESID). We also work with the rehabilitation specialists at the end-stage renal disease network.

Coordination of Efforts

Social Work services include collaboration with other agencies such as the National Kidney Foundation and UNYTS to promote awareness of transplantation and to increase donations.

Support Group

A support and educational group for potential and past organ donors is held on the first Tuesday of the month from 6:30 to 7:30 PM in Conference Room C on ECMC's 3rd Floor. At this meeting, we celebrate those who have given the gift of life, and we support those who are considering organ donation. Past donors share experiences to prepare and encourage potential donors. Learn more about the Support Group.

Ongoing Support

Social work services are available to address your questions from the start of transplant evaluation through the transplant process and at any time post-transplant.