Letter for Potential Adult Liver Transplant Patient

Dear Potential Adult Liver Transplant Patient:

We are pleased that you are considering our transplant program at Nebraska Medicine.   We are a well-established and nationally recognized center which began liver transplantation in 1985.  Since that time we have remained one of the national leaders in transplantation.  You will find our program well experienced and professional with a passion for transplantation. We welcome you to Nebraska Medicine!

Prior to scheduling your evaluation we will need to obtain medical information from your local physician(s) so that we can review the details of your medical history in order to provide a more complete evaluation. We will also need dental records, and information on which doctors you would like to receive the results of your evaluation.   We will need your insurance information so that we can be sure that you have financial coverage for the evaluation.  Once we have all this information we can schedule your evaluation.  Generally we can schedule your evaluation within 1 month or at a later time as per your request. 

The liver evaluation process takes approximately 3-4 days.  The evaluation is organized by a clerical scheduler and our transplant coordinators.  Both the clerical staff and our coordinators will be in contact with you to work out the details of your schedule.  The schedule may be sent to you in the mail or per your email as you request. 

You will be required to bring your care partner with you to the evaluation.   This is important because you will be required to have a care partner with your during your entire transplant stay in Omaha.   A care partner will be very helpful in helping you understand the medical information, the medical plan of care, medication administration as an outpatient in our area and for providing emotional support and getting you to and from different locations in our large medical complex.    

One of the forms you will find online is entitled Evaluation Acknowledgment.  It covers many aspects of the transplant evaluation, risks and benefits of transplantation, information about anti-rejection medications, and how decisions are made to approve a patient for transplant.  There is a lot of information in this form that is probably new to you and that you may have questions about.  Write your questions down and bring them to the evaluation!    On the first day of your transplant evaluation we will schedule a time with you to review this information personally and answer your questions.    Following this we will review the Evaluation Acknowledgment form and answer any other questions you still may have.  You will then be asked to sign the Evaluation Acknowledgment form indicating that you would like to proceed with the transplant evaluation.  Signing this form means you are agreeing to be evaluated for transplant, however, it does not obligate you in anyway to have a transplant.  You may decide at any time to stop the transplant evaluation process.

You and your care partner will meet with our multi-disciplinary transplant team.  You will have appointments set up to meet with a transplant coordinator, a hepatologist (liver doctor), a psychologist, a dietician, a social worker, a financial counselor and a pharmacy financial counselor. 

Medical evaluation testing will include abdominal ultrasound, a chest X-ray, EKG, blood tests (CBC, PT/PTT, basic metabolic panel, hepatic function panel, GGTP, drug and alcohol screening, HIV, Hepatitis B and C virus, CMV and EBV antibody testing), and cardiology and pulmonary function testing.  Other tests may be required as indicated by each patient’s special medical history and age.

After the evaluation has been completed, your results will be discussed in detail during the Transplant Patient Selection meeting.  The decision to list you for liver transplant is made during this meeting, unless special urgency is required.  The decision will then be discussed in detail with you.  If the decision is made to list you for transplant, the listing is completed only after your consent has been given and a Listing Letter of Understanding has been signed.  You may review the Listing Letter of Understanding on line.   If transplantation is not recommended, alternative treatments and/or follow-up care may be suggested.  The results of the meeting are also provided to your local physician(s).

Organ donation is based on patient and donor body size, blood type, and medical status.  The waiting period is variable for each person and there is no guarantee that a donated organ will become available.  Unfortunately, about 12% of our patients die while waiting for transplantation.   Our facility has a living liver donor transplant program.  Being a living liver donor is when a living person donates a portion of their liver to a person in need of a liver transplant.  If you have some one that would like to be a living donor they will need to contact our program.   They may call us at 1-800-401-4444. The living donation evaluation is very thorough and not everyone will qualify to be a donor.  The benefit of living liver donation is that you will be able to actually schedule your transplant!   We have information on living liver donor surgery on line and encourage you to share this information with your family or any interested friends.

If you are listed for transplant you will be notified when a donor becomes available by the transplant coordinator.  You will be required to travel to our transplant center within 4-6 hours of being offered an organ transplant.  Public air transportation is not acceptable due to frequent delays in public transportation.  Patients who live some distance from our transplant center will be required to have private air transportation arranged immediately prior to being placed on the transplant waiting list.  Setting up transportation is your responsibility.   You will need to work with your insurance company and a private jet company in order to secure transportation to our center within 4-6 hours of your notification of a donor organ being available. 

Your transplant surgery will take several hours. Following the surgery you will be transferred to an adult intensive care unit. When your condition is more stabilized your will be transferred to the Solid Organ Transplant Unit. This unit is for patients who have had transplants. You will be care for by our multi-disciplinary team which includes the transplant surgeon, hepatologist (liver doctor) , advanced practice providers, dieticians,  pharmacists, social workers,  bedside nurses,  case managers and transplant coordinators.    The time you spend in the hospital varies from patient to patient.  Your nurse coordinator will discuss the transplant surgery and your hospital stay in more detail during your evaluation. 

Transplant recipients and their care partner are required to stay in the Omaha area for at least 6-8 weeks after the patient has been discharged from the hospital after transplant.  This time will vary depending on the patient’s post-transplant course, and may be extended as needed to be sure you are doing well before you return home.   Outpatient care is provided by the patient and their care partner.  You may have a home health care nurse visit you for several days following your hospital stay to help with medication management and to check on your condition. You may also receive physical therapy as an outpatient.

Following transplantation, patients receive anti-rejection medications.  These medications need to be taken life-long by the patient in order to prevent rejection of the transplanted organ.  The patient and care partner will be given instructions regarding the dosing and side effects of these medications.  Laboratory tests will be required to confirm that anti-rejection drug levels are appropriate.  In addition, liver transplant patients may be on blood pressure medication, antibiotics, anti-virus medications and supplemental electrolyte replacements. 

While in the Omaha area, lodging is available at many locations near Nebraska Medicine.  You will find many accommodation choices online on the Nebraska Medicine website.  The cost of food and housing may be covered by insurance, but it will be your responsibility to have money to cover this during your stay in Omaha.  

Transplant patients continue to be followed by our team when they have returned home.  Our hope is to work closely with local physicians in order to provide optimal long-term post-transplant care for the patient.  Our program will continue to follow you and help you take good care of your new transplanted liver. 

We hope that this information has been helpful to you.  We want to be your partner in your liver transplant care.   If we can be of any further assistance, or answer any other questions, please do not hesitate to contact us at any time.

 

Sincerely,

Mary

 

Mary Clark, MSN, RN

Manager, Liver and Intestine Transplant Program

 

Adult Clinical Transplant Coordinators

Debb Andersen, BSN, RN, CCTC
Ann Rathman, BSN, RN
Jessica Riley, BSN, RN
Julie Rongone, BSN, RN
Wendy Scholl, BSN, RN
Angie Schrad, BSN, RN
Owen Treiber, BSN, RN
Danielle Treska, BSN, RN
Laurel Salonen, MSN, BSN, RN, CCTC