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Intestinal Transplant

Evaluation and The Waitlist

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Section 1: Transplant Evaluation

Informed Consent


Informed consent begins at the start of the transplant evaluation process and continues until transplant. Informed consent ensures that you fully understand the entire transplant process, both pre- and post-transplant. It also provides you with full knowledge of the possible risks and benefits associated with transplant and gives you the right to make educated health decisions.

Questions to Ask Your Transplant Team to Help Make an Informed Decision:

  • What are my choices other than transplant?
  • What are the risks and benefits of transplant?
  • What does the evaluation process include?
  • How long do most patients with my blood and organ type wait at this hospital for this type of transplant?
  • How long has this hospital and these surgeons been doing this type of transplant?
  • How many of these types of transplants does this hospital or surgeons perform each year?
  • Am I allowed to be listed at more than one transplant center (e.g. multi-listing)?
  • What are the organ and patient survival rates for my type of transplant at this hospital and how does that compare with the survival rates of the rest of the country?
  • How does the medical team decide whether or not to accept an organ for me?
  • How long will I have to stay in the hospital and the area after my transplant?
  • What is the extent of appointments and tests that I will have to endure after my transplant?
  • What are the costs should I expect associated with transplant and what financial assistance is offered?
For more information on comparing transplant centers, visit our page here or you can also visit the Scientific Registry of Transplant Recipients (SRTR) site for the most up-to-date data.




Intestinal Transplant Evaluation


The evaluation for transplant consists of many outpatient appointments, including consultations, lab tests, and imaging studies. These tests and meetings help to determine if:

  • Transplant is the right treatment;
  • There are alternative treatments that may help;
  • You are well enough to have a transplant.
Depending on the transplant center that you chose will determine how these appointments will be scheduled and conducted. Many centers will try to schedule the entire evaluation in a one to two-week period to accomplish everything in a short period of time, especially if you are coming in from out of town. It is important to discuss the arrangement with your individual transplant center.




Intestinal Transplant Evaluation Appointments


Transplant Nurse Coordinators

  • Provide education regarding the transplant evaluation process and care pre/post-transplant.
  • Allows time to ask any questions you may have and become fully informed.

Intestinal Transplant Physicians/ Gastroenterologists

  • Assist in medical evaluation and treatment of underlying intestinal disease.
  • Assess ability to respond to medical and dietary intervention.

Intestinal Transplant Dieticians

  • Assess the ability to respond to dietary intervention.
  • Manage nutrition pre/post-transplant.
  • Educate on nutrition therapy and transition to a full oral diet.

Intestinal Transplant Surgeons

  • Discuss appropriateness of transplant based on the evaluation.
  • Educate you about the types of transplant, benefits, risks, and possible complications.

Anesthesiologists

  • Determine how to provide safe administration of general anesthesia during transplant.

Social Workers

  • Assess your support system, adherence history, and motivation for intestinal transplant.
  • Provide support resources, such as assistance with finding lodging near the transplant center if you are coming in from out-of-town.

Financial Counselors

  • Discuss transplant coverage, costs associated with transplant, and medication costs.

Psychiatrists

  • Conducts in-depth psychiatric evaluation and assessment.

Pharmacists

  • Reviews medications to determine if there are any contraindications to transplant.
  • Addresses any concerns related to current and potential post-transplant medications.

Dentists

  • Assess oral health.

Gynecologists (females)

  • Assess reproductive health.

Infectious Disease Physicians

  • Assess past and current infections.
  • Assess past history on where you have lived to help determine exposure to particular bacteria and fungi.
  • Determine need for vaccinations.
  • They provide education on preventing infections and guidance on travel safety precautions.




Intestinal Transplant Evaluation Tests


Blood Tests

  • Determines how serious organ disease is and which organs are diseased.
  • Determines blood type.
  • Determines immunity or presence of certain viruses.

Chest X-Ray

  • Assesses the lungs.

Urine Test

  • Screens for urinary tract disease.
  • Tests for alcohol and drugs.

EKG

  • Assesses the electrical activity of your heart.

Echocardiogram

  • Assesses the structure of your heart.

Stress Test

  • Assesses the cardiovascular capacity of your heart.

Cardiac Catheterization

  • Diagnose and treat problems with your heart.

CT Scan and/or MRI

  • Assesses your organs extent of disease.
  • Checks for any tumors.
  • Checks the blood supply to and from the diseased organ.

Biopsy

  • Helps to determine the cause of disease.
  • Assesses your organs extent of disease.

Ultrasound

  • Determines size and shape of organ.
  • Checks for tumors.

Pulmonary Function Test

  • Assesses function of the lungs.

Endoscopy

  • May include colonoscopy, esophagogastroduodenoscopy (EGD), endoscopic retrograde cholangiopancreatography (ERCP), bronchoscopy, or small bowel capsule endoscopy.
  • Assesses the inside of organs.
  • Possible source of biopsies.

Venous Mapping

  • Assesses vascular access in the body.

Pap Smear (females)

  • Screens for cervical cancer.

Mammogram

  • Screens for breast cancer.

DEXA Scan

  • Assesses bone health.




Selection Committee


Following completion of the evaluation for intestine transplantation, the patient’s information is presented to the multidisciplinary selection committee. Recommendations for transplant are made by the committee after review and discussion of test results and consultations:
  • Intestinal transplant may be recommended, and the patient will be formally listed with UNOS.
  • Transplant may be deferred and the patient will not be listed because additional information or tests are needed, medical management strategies may be indicated, or current psychosocial concerns are significant and must be resolved before listing.
  • In some cases, transplant may be denied due to medical issues that may affect survival or the patient will benefit from medical or other surgical interventions rather than transplant.
The members of the committee will vary by center and patient diagnosis, examples of members includes:
  • Transplant surgeons
  • Gastroenterologists
  • Nutritionists
  • Social workers
  • Ethicists
  • Psychiatrists
  • Mid-level providers
  • Advanced practice nurses
  • General surgery
  • Pharmacists
  • Anesthesia
Note: For most transplant centers and states, your transplant team will officially list you with UNOS, the national organ waiting list. If you are pursuing an intestinal or multivisceral transplant in any state other than Ohio please proceed to the section on “Waiting List” to continue reading; however, if you are pursuing a transplant in Ohio, then read the portion of information below.




Ohio Solid Organ Transplant Consortium (OSOTC)


  • If you are accepted as a candidate for transplant at your transplant center in Ohio, your information will be sent to the Ohio Solid Organ Transplant Consortium (OSOTC) for further review.

  • This process requires the transplant physician to write a letter to OSOTC, which may take 2-4 weeks.

  • The primary purpose of the Ohio Solid Organ Transplantation Consortium is to ensure equitable access to quality medical care for those most likely to benefit from transplantation, regardless of ability to pay.

  • Once OSOTC has granted approval and your insurance company has approved you, information is then submitted to United Network for Organ Sharing (UNOS) for listing on the national waiting list.




Intestinal and Multivisceral Transplant Team


The intestinal and multivisceral transplant team consists of many members to make sure your receive the best care possible. The team may include a:

  • Transplant Surgeon
  • Gastroenterologist
  • Hepatologist (Liver Doctor)
  • Registered Dietician
  • Infectious Disease Specialist
  • Cardiologist (Heart Doctor)
  • Transplant Nurse Coordinator
  • Mid-level Clinicians (Physician Assistant, Nurse Practitioner)
  • Transplant Pharmacist
  • Physical Therapist
  • Occupational Therapist
  • Speech-Language Pathologist
  • Pathologist
  • Psychologist or Psychiatrist
  • Social Worker
  • Financial Coordinator





Section 2: The Waitlist

How is the country divided for organ matching and waitlist purposes?


The United Network for Organ Sharing (UNOS) is the organization that coordinates the nation’s organ transplant system. Under contract from the federal government, UNOS operates the Organ Procurement and Transplantation Network (OPTN), which serves to maximize the use of deceased organs and collect and analyze data pertaining to the patient waiting list, transplants, and organ matching.

Previously, for liver and intestinal organ allocation, UNOS had divided the US into 11 geographic regions to help facilitate transplantation. Within each region there were organ procurement organizations (OPOs) that served to increase the number of registered donors and coordinate the donation process. There are a total of 58 OPOs in the US. Regions.

In February, 2020, the organ allocation policies changed to distribute organs based on acuity circles. This bases off organ distrbution on nautical miles (NM) rather than geographical boundraies. You can read more about the implementation and policies here.




What is the organ waiting list?


The waiting list is a computer database that contains medical information on every person who is waiting for every type of organ transplant in the US and Puerto Rico. You do not have a number ranking for transplant and do not move up and down on the list every time a person receives a transplant. Each organ has its own allocation criteria.

For intestines, priority is based on clinical or medical status and distance between the transplant hospital and donor hospital (in nautical miles). There is no way of knowing how long you may be on the waiting list. When on the list, be sure to utilize your support systems and the resources around you to make the waiting time go by more smoothly.

Reasons you may be removed from the list are as follows:

  • If you do not follow your medical plan.
  • If you abuse alcohol or drugs.
  • If you become too sick for transplant while waiting.

According to the 2020 Milliman report, average waiting times for intestinal transplant increased since the 2017 report by 43 days. (1) Every transplant center’s waiting times vary and it is best to discuss average wait times with your individual center to get the best estimate.

Reference:

1. Bentlley S, Ortner N. Organ and Tissue Transplants: Cost Estimates, Discussion, and Emerging Issues. Milliman; 2020.




What are the three waiting list statuses for intestinal transplant?


There are 3 status designations on the intestinal transplant waiting list as of UNOS most recent policies in 2020: 1. Status 1: To assign an intestine candidate status 1, the candidate’s transplant program must submit a Status 1 Justification Form to the OPTN. A candidate may be assigned status 1 if the candidate has any of the following conditions:

  • Liver function test abnormalities.
  • No vascular access through the subclavian jugular, or femoral veins for intravenous feeding.
  • Medical indications that warrant intestinal organ transplantation on an urgent basis.
2. Status 2: Any active candidate that does not meet the criteria for status 1 must be registered as status 2. 3. Inactive Status (also known as Status 7): If the candidate is temporarily unsuitable for transplant, then the candidate’s transplant program may classify the candidate as inactive and the candidate will not receive any intestine offers.
  • Please note: Policy 7.2 waiting time as of July 1, 2020, inactive candidates will accrue waiting time while inactive for up to a maximum of 30 cumulative days.




Why might someone be removed from the waiting list?


In some cases, a patient that was once a transplant candidate is no longer a candidate for transplant. There are two main reasons why an individual may be removed from the transplant list:

1.Candidate’s Health Improves: The transplant candidate’s health and function improves and no longer qualifies for transplant. In the event that the candidate’s health declines in the future, he or she may be re-listed for transplant.

2.Candidate’s Health Declines: The transplant candidate’s health and function declines to the point that it is no longer safe to perform the transplant surgery. If the candidate’s health improves in the future, he or she may be placed back on the list.




Can I reduce my waiting time for an intestinal transplant?


Your transplant team will list you as either Status 1 or Status 2 based on your medical condition and urgency. Once listed, if your medical status changes, then your status on the list can change. Other than being listed as Status 1 or 2, there is not anything else your transplant team can do to decrease your waiting time. If you are listed for a liver-intestine or a full multivisceral transplant, the answer to this question will be different as MELD or PELD (pediatric) scores also determine wait time. If you wish to read more about the exact allocation policies you can review the policies from OPTN here.




Am I able to transfer time on the waitlist?


  • Patients may choose to list at a different transplant hospital and transfer their waiting time to that hospital.
  • For information about transferring waiting time, contact the transplant hospital directly.
  • The transplant teams at the original hospital and the new hospital are responsible for exchanging information and notifying UNOS of the transfer of waiting time.
  • Patients should ask each hospital if they accept transferred waiting time.




What factors affect the allocation of organs?


  • Blood and tissue type.
  • Medical urgency.
  • Body size.
  • Time spent waiting for a transplant.
    • Your waiting time starts from the date that the program lists you.
  • Distance between transplant hospital and donor hospital. (Please note: The way this is determined recently changed and is based on something known as acuity circles. Please refer to this article for more information).




Am I able to be listed at multiple transplant centers?


Yes. This is called multiple listings. As a patient you have the right to be listed at more than one transplant center. Each transplant center has its own policies on multiple listing.

You will be required to undergo the entire evaluation at each transplant center and become approved by each individual center for transplant.

Multiple listing is only an advantage if you select transplant centers in different organ procurement organization (OPO) service areas. Advantages of having listing in different geographic locations includes:

  • Access to multiple donor pools;
  • Different rules in different regions;
  • Possible shorter average wait times in different regions.





Section 3: Additional Resources

Helpful Downloads from Transplant Unwrapped


Sign-Up or Log-In to Access the Following: Evaluation Appointment Table: Help to understand and Keep track of all of your evaluation appointments. Evaluation Test and Procedure Table: Help to understand and keep track of all of your evaluation tests and procedures. Lab Value Chart: Help understand lab tests and record your normal levels.




Helpful Links


1. United Network for Organ Sharing (UNOS) 2. Organ Procurement Transplant Network (OPTN): Policies and procedures for organ allocation.




Transplant Unwrapped: Learn From Others


Learn From Others: Read stories, watch interviews, and listen to audio from numerous members of the intestinal community on a variety of topics. Useful for This Section: Learn from Others -Webinars- Indications and Pre-Transplant Evaluation presented by Kayla, two-time intestinal transplant recipient.




Transplant Unwrapped: Support Programs


Support Programs: Visit the Transplant Unwrapped Support Programs page to get your questions answered, speak with others in similar situations, and feel well-supported during your medical journey.




Page References


References Here.