Intestinal Transplant Waitlist Guide

Overview

An intestinal transplant replaces a failing small intestine, sometimes combined with the liver or other abdominal organs (multivisceral transplant). It is considered for people with intestinal failure who can no longer tolerate or safely receive total parenteral nutrition (TPN).

How the Waitlist Works

• Intestinal transplant is performed at a small number of specialized centers.
• Candidates are evaluated for nutritional status, vascular access, liver function, and TPN complications.
• Listed patients enter the OPTN/UNOS national waitlist; matching considers blood type, body size, and antibody status.

How to Get on the List

1. Referral from your gastroenterologist or intestinal-failure team.
2. Complete a comprehensive evaluation at an experienced center.
3. Some patients require combined liver-intestine or multivisceral transplant.
4. Once approved, the center lists you nationally — not through this website.

See the full step-by-step guide to getting on a transplant waiting list.

Wait Time Expectations

Because intestinal transplant is rare, wait times vary widely — often months to over a year — depending on size, blood type, and combined-organ needs.

Cost & Insurance

Intestinal and multivisceral transplants are among the most expensive procedures, often $1 million+ in the first year. Insurance coverage varies; the center's financial team can help navigate approvals.

Diet & Lifestyle

Daily Life While Waiting

• Meticulous central line care while on TPN.
• Watch for line infections — fevers require immediate attention.
• Mental health support; intestinal failure and transplant are uniquely challenging.

Cleaning, Shopping & Home Safety

Transplant patients often have weaker immune systems, especially after surgery. Simple habits at home help prevent infections.

Cleaning at Home

• Wash hands often with soap and water for at least 20 seconds
• Clean kitchen counters, cutting boards, and bathrooms regularly
• Ask family to handle litter boxes, bird cages, and fish tanks
• Avoid dust from construction, gardening soil, and moldy areas

Safe Grocery Shopping & Food

• Wash fruits and vegetables before eating
• Avoid raw or undercooked meat, eggs, and seafood
• Skip unpasteurized milk, cheese, and juices
• Avoid buffets, salad bars, and deli meats unless heated until steaming
• Shop at quieter times and consider grocery delivery

• Food safety for people at higher risk (FDA)
• Safe food handling (FDA)
• Germs & hygiene tips (MedlinePlus)

Life While Waiting for a Transplant

Waiting for a transplant can be physically and emotionally challenging. Taking care of your health and well-being is very important during this time.

Staying Healthy

• Attend all medical appointments
• Take medications exactly as prescribed
• Stay active if approved by your doctor
• Avoid infections by practicing good hygiene

Emotional Support

• Talk to family and friends
• Consider joining a support group
• Speak with a social worker or counselor

Be Ready

• Keep your phone available at all times
• Have a hospital bag ready
• Stay within travel distance of your transplant center

Recovery After Transplant

Recovery after a transplant is a critical period that requires careful monitoring and long-term care.

What to Expect

• Hospital stay after surgery
• Regular follow-up appointments
• Blood tests and monitoring
• Gradual return to normal activities

Medications

• You will need to take medications daily
• These help prevent organ rejection
• Missing doses can be dangerous

Lifestyle Changes

• Maintain a healthy diet
• Avoid infections
• Follow all medical instructions
• Stay active as recommended

Long-Term Care

• Regular check-ups are required
• You may need lifelong medication
• Ongoing support from your healthcare team

Transplant-Specific Notes

• Hospital stay is often 4–8 weeks.
• Frequent biopsies of the transplanted intestine to monitor for rejection.
• Gradual transition from TPN to oral nutrition over months.
• Lifelong immunosuppression and specialized follow-up.

Support

• A dedicated, trained caregiver is essential.
• Oley Foundation supports patients on home nutrition therapies.
• Specialty centers offer peer mentoring programs.

Case Worker, Social Worker & Disability Support

If you are preparing for a transplant or managing a serious medical condition, hospital case workers and social workers can help you navigate care, finances, and disability benefits.

Who Are Case Workers & Social Workers?

• Case Worker (Case Manager): Focuses on coordinating your medical care, hospital services, and discharge planning.
• Social Worker: Helps with emotional support, financial assistance, and access to community resources.
• They often work together as part of your healthcare team.

How They Help During the Transplant Process

• Scheduling evaluations and follow-up appointments
• Coordinating care between doctors and transplant centers
• Helping you complete required steps to get listed for a transplant
• Planning your care before and after surgery

Disability Benefits (SSI & SSDI)

If your condition limits your ability to work, you may qualify for disability benefits.

• SSI (Supplemental Security Income): For individuals with limited income and resources.
• SSDI (Social Security Disability Insurance): Based on your work history.

How They Help With SSI/SSDI

• Help you complete your application correctly
• Gather and organize medical records
• Provide documentation to support your disability claim
• Follow up with Social Security on your behalf
• Assist with appeals if your application is denied

How to Apply

You can apply for disability benefits through the Social Security Administration:

• Start your application: ssa.gov/benefits/disability
• SSI information: ssa.gov/ssi

If Your Application Is Denied

Many applications are denied the first time. You can appeal. Your case worker or social worker can help you:

• File an appeal
• Submit additional medical evidence
• Prepare for hearings

Additional Support Services

They may also connect you to:

• Medicaid or health insurance programs
• Housing assistance
• Food assistance (SNAP)
• Transportation to medical appointments
• Medication cost support

• Apply for Medicaid / health coverage
• SNAP food assistance
• Medicare coverage for transplants

Tips for Patients

• Ask your hospital: "Can I speak with a case manager or social worker?"
• Keep copies of all medical documents
• Be honest about how your condition affects your daily life
• Follow up regularly on your applications

Support for Children with Serious Medical Conditions

If a child is dealing with a serious illness or needs a transplant, there are additional support options available for both the child and their family.

Financial & Medical Support

Children with qualifying medical conditions may receive:

• Supplemental Security Income (SSI) for financial support
• Medicaid or CHIP for medical coverage
• Assistance with hospital bills, medications, and ongoing care

• SSI for children: ssa.gov/ssi/text-child-ussi
• Medicaid: medicaid.gov
• CHIP (Children's Health Insurance Program): insurekidsnow.gov

Support for Parents & Caregivers

Parents or guardians may be eligible for:

• Family Medical Leave (job-protected time off to care for a child)
• State-paid family leave programs (in certain states)
• Help from hospital case workers and social workers

• FMLA job-protected leave

How Hospital Staff Can Help

A hospital case worker or social worker can:

• Guide families through benefit applications
• Help gather medical documentation
• Connect families to financial and community resources
• Provide emotional and practical support during treatment

Family, Spouse & Friend Support

Going through a transplant journey can be overwhelming. Support from family, spouses, and friends plays a major role in helping patients stay strong and prepared.

How Loved Ones Can Help

Family and friends can support by:

• Attending medical appointments
• Helping manage medications and schedules
• Providing transportation to and from the hospital
• Assisting with daily tasks at home
• Being present for emotional support

Emotional Support Matters

• Listen without judgment
• Offer encouragement and reassurance
• Be patient during stressful times
• Help reduce feelings of isolation

Support During the Waiting Period

While waiting for a transplant, loved ones can:

• Help the patient stay organized and ready
• Keep emergency contact plans in place
• Ensure the patient is reachable at all times
• Help maintain a healthy routine

Support After Transplant

After surgery, support becomes even more important:

• Assist with recovery at home
• Help monitor medications and follow-up care
• Watch for signs of complications
• Encourage rest and healing

Caregiver Support

Caregivers should also take care of themselves:

• Take breaks when needed
• Ask for help from others
• Speak with a social worker if overwhelmed

• Family and Medical Leave (FMLA)
• Caregiver Action Network
• Family Caregiver Alliance

Trusted Resources

• OPTN — Organ Procurement & Transplantation Network
• UNOS — United Network for Organ Sharing
• Donate Life America — National Donor Registry
• Oley Foundation

Download Patient Guides

Free, official guides from national health organizations like the NIH, UNOS, and national patient foundations. They open on the organization's own website, so you always see the newest version.

• Treatment of Short Bowel Syndrome (incl. Intestine Transplant)NIH / NIDDK · Official guide page
• Organ TransplantationMedlinePlus (NIH) · Official guide page
• Transplant Patient ResourcesUNOS · Official guide page
• Food Safety for People with Weak Immune SystemsU.S. FDA · Official guide page

Frequently Asked Questions

Explore Other Transplants

Compare waitlist details, wait times, costs, and recovery across every transplant type we cover.

Helpful Tools

Official Government (.gov) Resources