Questions to Ask Your Transplant Center

Caregiver Responsibilities
Financial
Caregiver Quality of Life
Special Considerations with Caregiving
Relationship Dynamics 

Organs and Living Donation
Kidney Transplants 
Liver Transplants 
Heart Transplants 
Lung Transplants 
Living Donation 

Caregiver Responsibilities

• What are the specific requirements for caregivers? 
• How many caregivers are required?
• Are paid caregivers allowed (from an agency or a friend or relative)?
• Are there age requirements for caregivers?
• How close to the center must the patient and caregiver be when waiting for transplant? 
• Are there relocation requirements before or after transplant? 
• What are the travel requirements before and after transplant? 
• What are the specific caregiver responsibilities at this center? (Share your understanding of caregiver responsibilities.) What information can you give us about the donor? 
• What is the process for contacting and communicating with the donor’s family?

Special Considerations with Caregiving

• Does the center offer in-person or telephone interpreter services? 
• What are the center’s requirements for caregivers who also work? 
• What are the center’s emergency preparedness policies? 
• Is the transplant center involved in clinical trials? 
  • Can patients join the clinical trials?
  • What are the requirements to join?
  • What are the benefits and risks of joining (or not joining)?
• Is the center involved in other research studies (not clinical trials)? 
  • Can patients join the studies? 
  • What are the requirements to join?
  • What are the benefits and risks of joining (or not joining)?
• What are the procedures for a multi-organ transplant? What organ team will be the primary team?

Financial 

• Will I lose income? 
• How will I make up the lost income?
• Can I afford to lose that income?
• Am I eligible for FMLA benefits at work? 
• Have I talked to my employer about taking time off?
• How much paid vacation time do I have? 
• Do I have legal protection through my employer or state government? 
• Can I keep my insurance if I take time off work? 
• Do I have to pay my insurance premium out of pocket?
• Do other people depend on me financially? Will they be affected?
  • Do I care for other people? Will I have to pay for their care?
  • Do I have children that will need childcare or afterschool programs?
  • Do I have a pet that will need boarding?
• What extra costs will I have, as a caregiver? For example, buying food for the patient, hotels costs while the patient is hospitalized, transportation for appointments, etc. 
• If I am caring for someone in another state, can I pay for a last-minute plane ticket and other travel expenses?
• Can I pay my bills if I take time off work? For example, utilities, phone, credit card, house, etc. 
• Am I responsible for making sure the patient’s bills are paid? 
• Have I talked with the patient about Power of Attorney for Healthcare and Finances? 
• If the patient has already completed Power of Attorney for Healthcare and Finances, can I provide the original copies?

Quality of Life and Self-Care

• Do you offer mental health services to caregivers? 
• Do you have a caregiving support group? 
• What are the requirements for alcohol, tobacco, and illegal drug use for patients and caregivers? 
• Who offers support when the patient is in the hospital? 
• Do you offer a social worker, chaplain, pet therapy, art therapy, or music therapy when the patient is in the hospital?

Relationship Dynamics

• How can transplant affect reproduction (having a baby)? 
• Who on the transplant team can help if the patient doesn’t want to accept care?

Questions to ask Your Kidney Transplant Center

Kidney transplant can be unexpected or planned. Either way, consider asking these questions to help yourself prepare:

• What are the risks and benefits of receiving a kidney transplant?
• What is the wait time for a kidney transplant in this region?
• What options are there to receive a kidney transplant sooner?
• Can they receive a kidney from a living donor?
• Can the patient be listed at more than one transplant center? 
• What are the risks and benefits of accepting an organ from an increased risk donor?
• Can I be the donor and the caregiver? 
• If the recipient gets called in in the middle of the night, how will we know where to go?
• After the transplant, can I leave the patient for 1-2 hours while I go to the grocery store or do errands? 
• Are there certain foods the recipient should not eat after transplant?
• What happens if I get sick while I am a caregiver? 
• Are there other requirements for caregivers before, during, or after transplant?

Living Donation

• What should I do if the living donor feels pressured to donate?
• How long should I plan to take care of the living donor?
• Does the living donor need 24/7 care?
• What should I do to take care of the living donor after donation?
• What medications will the living donor take?
• How will I know when the living donor doesn’t need my help anymore? 

Questions to Ask Your Heart Transplant Center 

When choosing a transplant center (especially if you and the patient can move), look for a center that has shorter wait times and higher success rates.

Consider asking centers the following questions:

• What are the risks and benefits of receiving a heart transplant?
• How far away from the transplant center can the patient live when they are on the waiting list? 
• Does the patient need a caregiver while they wait for transplant?
• How far away from the transplant center can the patient and caregiver live after transplant?
• How long will the patient need a caregiver? 
• Can the caregiver work while caring for the patient? 
• How does the center decide listing status?
• What is the patient’s listing status? 
• What are the risks and benefits of accepting an organ from an increased risk donor?
• Can the patient be listed at more than one transplant center?
• Do you have a partner facility the patient can be listed with as well? 
• Will the patient need an LVAD while waiting for transplant? 
• How can I protect my job while being a caregiver? (Insert link to General Content sections on employment)

Questions to Ask Your Lung Transplant Center

• What are the risks and benefits of receiving a lung transplant?
• How long might the patient wait for a lung transplant?
• Will you need to move closer if the patient’s health gets worse?
• Will the patient need to stay in the hospital while waiting for transplant? 
• Will the patient need a ventilator or ECMO (machines that give the lungs oxygen when a patient can’t breathe well) while waiting for transplant? 
• How close must the caregiver and patient live to the transplant center before and after the transplant? How long must we live close to the transplant center? 
• How often will the patient have appointments at the transplant center, both before and after transplant?
• Must the patient buy a spirometer, or will the center provide it?
• What is the patient’s LAS score?
• How often will the LAS score be re-evaluated?
• What are the risks and benefits of accepting an organ from an increased risk donor?
• What lifestyle and food safety changes must the patient make after transplant?
• When (and for how long) must the patient wear a mask after transplant?

Questions to Ask Your Living Transplant Center 

• What are the risks and benefits of receiving a liver transplant?
• What is the average wait time for a liver transplant at this center? 
• What is the average MELD score of patients who receive a transplant at this center? 
• What are the risks and benefits of accepting an organ from an increased risk donor?
• Does your center accept living liver donations? 
• What are the requirements for alcohol, drug, and tobacco use for liver transplant patients? 
• What are the requirements for alcohol, drug, and tobacco use for caregivers?  
• How long will I stay with the patient after liver transplant surgery?  
• How long will the patient need 24/7 care after a liver transplant?
• Can the patient be listed at more than one transplant center? 
• Does the patient qualify for community long term care services through the Medicaid Waiver?
• Do we have to move to be closer to this transplant center? 
• If yes, are there options that are cheaper than hotels, like Airbnbs? 
• Should the patient have an emergency device (like Lifeline) before or after transplant?