You and your family members may find it very confusing and frightening when you learn you may be in need of a transplant. We understand you will have questions. That is why we have a designated transplant team member who is available to talk with you about your disease, various treatment options and which options are best suited to treat your disease. In addition, our team of doctors, nurses, technicians, dietitians, social workers and many others are available to provide you with care and support throughout the transplant process, during your hospital stay and even after you return home.
The following pages will help to explain the transplant process along with the benefits, risks and procedures involved with intestinal transplantation.
To be considered as a candidate for intestinal transplantation, you will first undergo a thorough transplant evaluation. The evaluation will help our transplant team learn more about you and your disease. This also will give you the opportunity to learn more about our intestinal transplant team and program. The evaluation is an important part of the transplant process because it will:
- Confirm your diagnosis and determine the extent of the intestinal injury or disease
- Assess other medical or psychosocial problems affecting your health
- Determine what type of operation is best for you (intestine alone or with other organs)
- Provide information about the risks and benefits of transplantation
- Review your financial benefits and discuss the financial considerations associated with a transplant
- Answer any questions you and your family may have
The transplant evaluation usually takes place over four to five days and is usually done on an outpatient basis unless an inpatient stay is medically necessary. The evaluation includes, but is not limited to, the following tests:
- Blood tests
- Heart tests
- Abdominal ultrasound
- Radiological tests looking at the length and function of the intestine
- Lung function tests for adults
- Complete physical examination
Consultations with the transplant team members including:
- Transplant physician
- Transplant surgeon
- Transplant nurse coordinator
- Social worker
- Financial Coordinator
- Child Life Specialist
- Other specialists as indicated (Cardiology, Pulmonary, Endocrinology, Hematology)
Upon completion of the evaluation, your results will be presented at the multidisciplinary transplant team meeting. The team members will carefully review all the information from the evaluation and give their recommendation of the best treatment option for you. A transplant coordinator contacts patients after the meeting to discuss their care plan.
Waiting for Intestinal Transplantation
If intestinal transplantation or a combined intestine/liver/pancreas (multivisceral) transplant is the best option for you and you are agree, your name will be placed on a national waiting list based on your blood type, body size (height and weight) and medical urgency. This time of waiting can be a difficult time for you and your family because there is no way to know when a suitable donor organ will become available. Some patients may only wait days or weeks, while others may wait for months or years for transplant.
Performing an isolated intestinal transplant generally takes less time than a combined liver/intestinal/pancreas. Depending on the organ(s) transplanted, the operation will take between four to seven hours to complete. It takes many hours to remove the old organs, replace with new organs, attach the blood vessels, an ileostomy is created and then closure of the skin. An ostomy is an opening from inside the abdomen to the outside of the abdomen and is used for elimination of stool, as well as monitoring the new intestine for rejection. Depending on the type of intestinal failure, some ostomies are temporary and others are not. If the ostomy is temporary and the patient remains stable, the bowel can be reconnected within three to six months after the initial transplant.
After the Operation
After surgery, patients are taken directly to the intensive care unit (ICU). The time spent in the ICU varies on the individual patient's condition. An average hospital stay is between one and two months and may be longer. Once patients leave the ICU, they move to the solid organ transplant unit (SOTU) or the pediatric unit. Once on these units, activity and diet are advanced as quickly as possible. Most patients require Total Parenteral Nutrition (TPN) for a short period of time as they advance to oral feedings. Adult patients will advance to a full diet. Most children require a time of enteral (Naso-gastric/feeding tube) feedings to support their wound healing and growth and development. Activity will also be advanced as tolerated. Patients are encouraged to be out of bed and active as their condition allows. Physical and occupational therapy will assist and encourage patients to be active, which improves recovery.
At Nebraska Medicine, we have some of the most experienced physicians and nurses who take every step to prevent any of the potential complications that can occur following transplantation of the intestine or intestine/liver/pancreas. However, like any major surgery, complications can happen and include both surgical and medical complications.
Surgical complications can include, but are not limited to, the following:
- Wound infections
- Perforation of the intestine (hole in the intestine)
- Abdominal abscess (pocket of infection)
- Biliary leaks (leaking from the bile ducts)
The most common medical complications after intestine or liver/intestine/pancreas transplant are:
- Hypertension (high blood pressure)
- Episode of rejection of the new intestine or liver
- Kidney dysfunction
The severity of these complications in each patient varies and cannot be predicted prior to the transplant.
High Blood Pressure or Hypertension
There are many causes for high blood pressure after transplantation. Hypertension generally occurs right after surgery and may decrease over time. Patients usually leave the hospital on blood pressure medication, but over time these drugs may be eliminated. The only long-term medications patients will be required to take are anti-rejection. These medications are used to prevent the body from rejection of the transplanted organ(s). New medications are being tested, so the drug therapy after transplantation may change. Right now, anti-rejection medication therapy is considered lifetime medication.
Rejection of New Intestine or Liver
A few patients may experience rejection of transplant. This can occur in either the intestine or the liver and can be treated completely if diagnosis is made early. Rejection is not something that you usually see or feel; it is something that the physician may suspect by measuring stool outputs or reviewing liver function tests. The only way to confirm rejection is through an intestinal or liver biopsy. Biopsies may be performed on patients when they are in the hospital or in an outpatient endoscopy center. Liver biopsies are only performed when the liver function tests are consistently elevated.
Treatment of Rejection
Rejection is usually treated with medication. There are several different medications that may be used to reverse rejection. If these medications fail, patients may require re-transplantation. A patient with an isolated intestinal transplant who has aggressive and untreatable rejection, the transplanted bowel may have to be removed. If this happens, the patient is placed back on TPN, recovers from the operation and can eventually be placed back on the transplant list. Other less common reasons for the removal of a transplanted bowel include clots to the blood flow of the intestine, severe infection or lymphoma. In combined transplants, rejection of the liver is usually treatable with medication (see Liver section).
Infection may occur in any body system and most of the infections are caused by organisms common in the environment or in and on the patient's own body. These organisms include bacteria, fungi (molds and yeasts) and viruses. Other people (nurses, doctors, family members or friends) who come into regular contact with you don't risk transmission of serious infections. Although you may get colds and flu, these are not the kinds of infections that are associated with serious threat to life; therefore, you are not placed in isolation.
The extraordinary care that you received while hospitalized at Nebraska Medicine does not end at the time of discharge. The intestinal transplant team continues to follow and monitor your progress. To answer any questions after your transplantation, our team is available to you, your family members and your local physician.
Prior to leaving the hospital, you will receive a detailed discharge instructional notebook that a transplant coordinator and transplant pharmacist will review with you and your family members. After transplantation, you may find your life has changed in several ways. Activities will not be restricted, except for eliminating heavy lifting for the first month post transplant. Diet will depend on the patient and may include eliminating salt at the table, concentrated sweets and/or diary products. Some patients, mostly children, will require naso-gastric tube feedings for a period of time to support wound healing, strength and growth. A transplant dietician is available for assistance with any nutritional questions.
You will remain in the Omaha outpatient area for a minimum of three months or longer prior to returning home. Lab work will be monitored regularly and you will be seen in our transplant clinic weekly or as needed. The time spent in Omaha allows you and your family to become familiar with your medical plan of care. It also allows the team to make medication adjustments and address any other concerns that might arise.
Once at home, we return your care to your local doctor. However, the transplant team will continue to monitor lab work and adjust the anti-rejection medications. In addition, we will follow any health problems or concerns and may ask you to return to Omaha if we do not feel we can safely handle a medical issue over the phone. We commonly ask patients to be seen in person at least once a year.
You and your family members play a very important role in successful intestinal transplantation. Responsibilities to help in long-term success include the following:
- Take all medication as instructed
- Have lab work done as scheduled
- Call the transplant coordinator with new prescription or over-the-counter medications, ongoing health concerns or persistent fevers, and any questions or concerns
- Keep regular appointments with your local physician and transplant team.
- Obtain routine health-care maintenance checks such as mammograms, pap smears, PSA, colonoscopy, etc.
- Call the transplant nurse coordinator with any changes in your address or phone number