Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.


Transplant Frequently Asked Questions (FAQ)
There are a number of steps that you must follow before you can get on the national waiting list, including:
1. Receive a referral from your physician.
2. Contact a transplant hospital. Learn as much as possible about the numerous transplant hospitals in the United States and choose one based on your needs, including insurance, location, finances and support group availability.
3. Schedule an appointment for evaluation to determine if you are a good candidate for transplant.
4. During the evaluation, ask questions to learn as much as possible about that hospital and its transplant team.
5. The hospital’s transplant team will decide whether you are a good transplant candidate. Each hospital has their own criteria for accepting candidates for transplant.
6. If the hospital’s transplant team determines that you are a good transplant candidate, they will add you to the national waiting list.
UNOS does not send patients written confirmation of their placement on the waiting list. Instead, patients should find out if they have been placed on the national waiting list through their transplant hospital. If you have questions about your status on the list, you should ask the team at your transplant hospital.
Yes. This is called multiple listing. It will depend on your individual transplant center and their policies. Each center has its own criteria for listing transplant candidates, and each center can refuse to evaluate patients seeking to list at multiple centers. If you wish to list at more than one center, inform your primary center and other centers you contact.
There is no way to determine how long you will have to wait for your transplant. Intestinal and multivisceral transplant wait times vary greatly, and have increased in length in recent years. It is important to consult your individual center to determine if they can give you a better idea of what patients at their center have been waiting for your particular type of transplant, however, even the information they give is not guaranteed.
Organs may become available at any given movement. If you are struggling with the waiting period, please consider participating in one of Transplant Unwrapped's Support Programs.
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.
Yes, although not common in the United States, it is possible to have a living donor intestinal transplant. The University of Illinois-Chicago is the only center in the US offering living donor transplant. For more information about the Chicago program, please visit this site.
This number is changing constantly. A new person is added to the waiting list every 10 minutes. As of July 2020, nearly 121,000 people were on the national waiting list for all types of transplant. You can visit the Organ Procurement and Transplant Network (OPTN) site for the most up-to-date information.
One year after transplant, as a recipient you have the right to write a letter to the donor’s family by sending the letter to your transplant center who will forward it on for you. To read more about this please visit Transplant Living: Contacting Your Donor Family.
Hair loss is common after a stressful event like a major transplant surgery. Additionally, certain medications or nutritional deficiencies can also cause hair loss. Talk to your transplant team if you notice hair loss happening and you are concerned, but understand that it is not uncommon post-transplant.
Getting tattoos or piercings are discouraged after transplant due to the risk of infection. If you wish to read more on this topic please visit our page on Life after Transplant.
It is possible to get pregnant after an intestinal transplant. To date, there have been eight reported successful pregnancies post-intestinal transplant (1).
References:
Augusto Lauro, Cal S. Matsumoto, Ignazio R. Marino & Vincenzo Berghella (2017) A review on pregnancy after intestinal transplantation, The Journal of Maternal-Fetal & Neonatal Medicine, 30:2, 205-212, DOI: 10.3109/14767058.2016.1168801
Your individual transplant center will designate criteria on when they recommend you call them based on certain signs and symptoms. If you are having an emergency, please proceed to your nearest emergency room or dial 911.
In general, if you are experiencing the following signs and symptoms it is always a good idea to contact your transplant coordinator on call:
Fever >100.4o (or as designated by your transplant center)
Blood pressure readings that are significantly higher or lower than your usual limits
Changes in your urine: increased or decreased amount from the ordinary; blood in the urine; rusty color to the urine; foul smelling urine; burning sensation when you urinate
Edema: fluid or swelling in the face, abdomen, or legs
Weight gain of two to three pounds/ 1 kilogram in one night
A new pain
Shortness of breath or trouble breathing
Chest pain or tightness in the chest
Nausea or vomiting
Inability to take your medications or take care of yourself
Light headedness or feeling like you are going to faint
Being unusually weak or tired