Learn about the intestinal transplant process
- We know that learning about the intestinal transplantation process and how to care for your health may be overwhelming at first. But remember, you can learn a little each day.
- There will be times when you feel both excited and nervous about your transplant: these are normal reactions.
- Being prepared in advance by learning and understanding what to expect will help ease your fear of the unknown.
- We have designed an extensive teaching program to help you learn about the intestinal transplant process, your individual health needs, and medical care before and after your transplant.
- Always discuss your questions and expectations about your intestinal transplant with your healthcare providers.
Be an active partner in your healthcare
- We believe it is important for you to be an active participant in your healthcare.
- You will need to assume a lot of responsibility for your own care by doing whatever is necessary to build and maintain your strength for the intestinal transplant.
- Your health care providers will work with you throughout this process to optimize your care.
- Your long-term health is very important and you will learn how to recognize and report any change in the way you feel.
- No one knows how you feel except you.
- Start identifying caregiver/support person now as this is a requirement for transplantation.
Referral & Evaluation
Referrals for possible intestinal transplant evaluation can be initiated from several sources. They are typically received from a local physician, case manager, or from the patients themselves. Time is spent over the phone discussing the medical condition of the potential transplant candidate and medical records will be requested. Once these records are reviewed and it is decided that an intestinal transplant evaluation is indicated, an insurance review is conducted. Once appointments are arranged, a packet will be sent via mail which will include a schedule of appointments, a map of Cleveland Clinic’s campus, housing information, and education materials.
An intestinal transplant evaluation usually requires up to two weeks of outpatient testing. Appointments are generally scheduled as soon as possible, prioritized by medical urgency. Your evaluation will consist of several consultations, lab tests, and various imaging studies. You may require additional visits prior to final approval.
The informed consent process begins during the pre-transplant evaluation and continues throughout the entire transplant process. You will be educated by our Center for Gut Rehabilitation and Transplantation (CGRT) regarding the evaluation process, transplant procedure, postoperative care (including need for lifelong immunosuppression), and potential complications. You will be scheduled for the following consults and appointments during your transplant evaluation:
- Transplant Nurse Coordinator will provide education regarding the transplant evaluation process, listing criteria and process for transplant as well as patient responsibilities before and after transplant. This meeting is intended to provide you with an opportunity to ask questions and to become fully informed about the intestinal transplant process.
- Gastroenterologists and Dietitians are professionals who specialize in intestinal failure. Their function is to assist in the medical evaluation and treatment of the underlying intestinal disease and assess your ability to respond to medical and dietary intervention. The physicians and dietitians also work with the transplant team to determine if you are medically suitable and nutritionally optimized for an intestinal transplant. These professionals have the expertise needed to manage nutrition for pre- and post-transplant patients, provide information and education on nutrition therapy and ease the transition to tolerance of a full oral diet.
- Intestinal Transplant Surgeon will meet with you and discuss the appropriateness of a transplant based on the information obtained during your evaluation. The surgeon will also discuss the significance of undertaking an intestinal transplant, the various types of intestinal transplants, the risks and benefits of the surgery, and the possible complications after your transplant.
- Anesthesiology consults will be scheduled to determine the care required to provide safe administration of general anesthesia during your transplant surgery. Your records will be reviewed and additional testing may be recommended if indicated.
- Transplant Social Workers conduct a thorough assessment of your support system, compliance history, and motivation for intestinal transplantation. Your ability to cope with the stress of the transplant process and ability to follow a rigorous treatment plan both before and after transplantation will be discussed. Your support person/caregiver must be present during evaluation and the entire transplantation process. Recommendations regarding support resources available will be made as indicated.
- Patient Financial Advocate will discuss the coverage plan you have in place, the costs associated with your transplant, and the cost of the medications you will require. They will work with you to understand your insurance coverage and/or options to obtain or maintain coverage.
- Psychiatrist will conduct an in-depth psychiatric evaluation and assessment.
- Lab work is required during the transplant evaluation and is determined by individual need of the potential intestinal transplant candidate.
Sometimes, referrals will be made to other specialized services for consultation. For example, appointments may be necessary with renal, pulmonary or cardiology specialists to assess possible co-morbidities and optimize clinical conditions before transplant surgery occurs. All patients must undergo testing studies as determined through the evaluation process to describe the individual anatomy of the gastro-intestinal tract. This is extremely important to determine the type of transplant needed. Given the incidence of venous access thrombosis with prolonged parenteral nutrition, candidates for intestinal transplant will need an accurate “mapping” of major vascular access available in the body. This is assessed by performing a vascular access study. If necessary, in selected situations, interventional radiology may be consulted for additional pre-operative vascular access assessment.
Approval & Listing for Transplant
Selection Committee and UNOS Listing
Once your transplant evaluation is complete, your results will be presented and discussed by the Intestinal Transplant Selection Committee to determine the best possible recommendations regarding your ongoing medical care, surgical intervention and suitability for intestinal transplant surgery.
The Committee consists of the transplant surgeons, gastroenterologists, nutritionists, social workers, nurse coordinators, ethicists, and psychiatrists. The outcome of this meeting will be reported to you by the transplant coordinator. If the recommendation is to place you on the waiting list for an intestinal transplant, a case summary will be submitted for review to the Ohio Solid Organ Transplant Consortium (OSOTC). Once OSOTC has granted approval, your case will be sent to insurance for tap approval. Once approved by insurance, information is then submitted to United Network for Organ Sharing (UNOS) for listing on the national waiting list.
UNOS is a non-profit organization, which operates the Organ Procurement and Transplantation Network (OPTN) under federal contract. UNOS maintains a national waiting list and the UNOS organ placement specialists operate the network 24 hours a day, seven days a week. Additional information about the waiting list and UNOS can be obtained by logging on to UNOS or OPTN.
Management on the Waiting List
Once you have been listed with UNOS, you will begin the waiting period and you may be called for transplant surgery at any time. This waiting time varies depending upon organ availability. During this time, you will be seen in the transplant clinic and will need to have follow-up testing at regular intervals in order to maintain your position on the UNOS waiting list.
It is very important that you contact the transplant center with any changes such as your phone number, address and insurance coverage. If you are hospitalized and/or your medical condition worsens, you must contact your coordinator. It may be helpful to carry this contact information with you at all times should any question, concern or worsening in your clinical condition arise unexpectedly.
While actively listed and awaiting “the call” for transplant surgery, you will need to be available at all times. Timing of organ availability is unpredictable, so you may receive a call from your coordinator to come to the hospital any time of day or night. When an organ does become available, you will be required to travel to Cleveland Clinic immediately. It is required to
Intestinal and multivisceral transplants are performed using organs from cadaveric donors. A cadaveric donor is an individual who has sustained brain death and consent has been obtained for organ donation. Organ donation is critical to the success of intestinal transplantation. The United States is divided into regions and each region is in turn divided in different Organ Procuring Organizations (OPOs) in order to facilitate and optimize the process of organ donation, procurement and organ allocation. Cleveland Clinic is located in Region 10, which includes all of Indiana, Ohio and Michigan.
Time of Transplantation
Getting the Call
When an organ becomes available and is suitable for you, you will receive a phone call. Timing is very important and your coordinator will tell you when you need to be at Cleveland Clinic. After arriving to the hospital you will be admitted. The preoperative testing consists of a Chest X-ray, EKG and comprehensive lab work. When appropriate, you will be transported to the operating room. Your family will be directed by the support staff to a waiting area and periodic updates will be provided while they wait for your surgery to be completed.
Surgery – What to Expect in the Operating Room
During the transplant surgery you will be put under general anesthesia, which means you will be given medications to put you to sleep. You will also be placed on a machine to help you breathe (ventilator). The Anesthesiologists will talk with you in more detail about this process prior to surgery. The transplant surgeon will make an incision in your abdomen. Through this incision, your intestine will be removed (together with other organs if a multivisceral transplant is performed) and the appropriate donated organ(s) will be placed into your abdomen.
During the surgery, you may require a surgical technique called veno-veno bypass. If required, your surgeon will place an incision in your underarm or neck and groin for the placement of catheters. These catheters are connected to a machine allowing your blood to bypass part of your upper abdomen during surgery. The transplant surgeons will decide if this machine will be used based upon your condition.
Special mechanical boots will be used to keep blood flowing through your legs to try to prevent dangerous blood clots. You will be in the operating room approximately six to 12 hours (the operation may last longer without necessarily meaning that something is going wrong). As you recover after transplant and begin to ambulate, these boots will become unnecessary.
Drains will be placed into your body to allow fluids to be removed and to help you heal. Everyone undergoing intestinal transplant will have a stoma at the end of the procedure. A stoma is a surgically-created opening in the small bowel or colon (respectively ileostomy and colostomy) that allows the transplant team to monitor the transplanted organ. Unless the stoma cannot be reconnected or unless frequent and severe episodes of rejection develop, the stoma is usually a temporary situation. After a period of time which differs from patient to patient (usually between six to 12 months), the stoma will be closed. The stoma closure is a small operation that, if not complicated, only requires few days in the hospital.
In addition to a stoma, you may have a tube called “Gastrojejunostomy feeding tube” coming out from your skin. This tube is inserted during the operation through the skin and into the GI tract., One end is in the stomach. The gastric end is shorter, terminates in the stomach, and is usually used to decompress the stomach or to administer medications. The longer end is in the jejunal lumen, and is used for supplemental tube feeding if necessary. This tube is usually removed after and reasonable nutritional independence is achieved. In selected cases, the gastrojejunostomy tube is not placed.
Inpatient Post-Operative Surgical Care
After surgery, you will be taken to the surgical intensive care unit where you will be closely monitored. Once stabilized, you will be transferred to the transplant floor where you will continue to learn your post transplant care. Family members and visitors may stay according to hospital policy. The length of your hospital stay is very individualized and depends on the rate of your recovery.