Discharge, Planning & Recovery

Post-Operative Discharge and Recovery Process

After you leave the hospital you will still be recovering. For the first four to six months, you will have some restrictions on your daily activities. During the recovery period, the transplant team will closely follow your progress. You will need to be monitored on a lifelong term basis and you must agree to make yourself available for blood work, examinations, scans of your abdomen, and frequent endoscopic tests (see below).

The transplant team will see you on a regular basis post-transplant. As time from your transplant goes by, follow up visits tend to be less frequent unless complications develop. In this case, your plan of care will be dependent on your medical condition. After transplant, the transplant team is committed to you and will follow you in the transplant clinic for life.

Outcomes and Complications of Intestinal Transplantation

Statistics from the Scientific Registry of Transplant Recipients (SRTR) show that one year after transplantation 83 percent of intestinal transplant patients are still alive and 70 percent are still alive at three years. Approximately 80 percent of these transplant recipients become free from parenteral nutrition.

There are inherent risks in all surgeries, especially surgeries conducted under general anesthesia. Many complications are minor and get better on their own, but in some cases, the complications are serious enough to require another surgery or medical procedure. Immediately following the surgery, you will experience pain, but this will be carefully monitored and controlled as you recover.

Signs of Rejection/Monitoring

Your body's immune system protects you from bacteria, viral and fungal infections that can cause disease. White blood cells, which are part of your immune system, fight to rid your body of substances they recognize as foreign to you; however, the immune system will also identify your newly transplanted organ as being foreign and will attack the transplanted organ. This process is called rejection. Rejection is common, especially during the first three months after a transplant.

Such episodes are not uncommon and can usually be reversed with medicine, but only if detected early. Some of the signs and symptoms of rejection are identical to those associated with infection. This makes it extremely important to keep your clinic appointments and to notify the coordinator of any symptoms so that the difference can be determined. You may need to be admitted to the hospital for further diagnostic testing and treatment.

Rejection and infection are two serious problems that require completely different treatment. As with any health problem, the sooner treatment is initiated, the lower the chances are of serious illness developing.

It is important to become familiar with the signs and symptoms of rejections. Symptoms include:

• Fever/Malaise
• Change in ostomy output (increased or decreased)
• Intestinal bleeding
• Nausea/Vomiting

Post Operative Rejection Monitoring

Whenever rejection is suspected based on clinical symptoms, an endoscopy is performed. This procedure is the only way to detect rejection and allows the macroscopic and microscopic appearance of the transplanted intestine to be analyzed. The ileostomy (or colostomy) provides an easy opening to enter the intestine for the endoscopy.

Per protocol, endoscopies are performed based on your medical condition. Ileoscopy and biopsy are performed two to three times per week while in the hospital post transplant, weekly for the following three months, then monthly until stoma closure. The frequency will be determined by your medical team. Once the stoma is closed, endoscopies will be performed through the rectum or the mouth depending on which area of the intestine needs to be evaluated.

The endoscopy is a 10-15 minute procedure and is well tolerated by the transplant recipient. A special endoscopy scope called a zoom endoscope allows a close magnified evaluation of the transplanted bowel. During the endoscopy, multiple intestinal biopsies (small pieces of mucosa) are obtained. These are read by an expert transplant pathologist during the same day the procedure is performed. Because the transplanted intestine (also called a “graft”) is denervated, the procedure is painless.

Medications

You will be required to take medications for the rest of your life to prevent your body from rejecting the transplanted organs. The types and doses of medications will be determined and adjusted by your physicians based on your condition and health. Following transplantation you will receive further instructions and teaching regarding the medications specifically ordered for you. Listed below are examples of some, not all, of these medications. It is important to note that all anti-rejection medications can increase your risk for infections and malignancies, so self-monitoring and health maintenance will be very important.

• Tacrolimus (Prograf): Usually used as a primary immunosuppressive agent.
• Sirolimus (Rapamune): Can be used as a primary or secondary agent
• Steroids: They can be used to prevent and treat episodes of rejection. If used for rejection treatment, usually it is given by an IV.
• Everolimus: They can be used to prevent and treat episodes of rejection. If used for rejection treatment, usually it is given by an IV.

The goal of various medications during and after transplantation is to help your body tolerate the transplanted organs. Other medications may be required for the rest of your life to treat or prevent various infections. Your potential need for these medications may be determined by the blood work after transplantation.

Life After Transplant

Based on quality-of-life studies performed in different transplant programs, most intestinal transplant recipients have a good or normal quality of life after transplantation and in a growing number of patients the quality of life is reported to be better than when they were on PN. Major advancements have been made in recent years in immunosuppression, surgical techniques and post-operative care. Now, favorable outcomes for intestine transplants are no longer the exception; they are the expectation. This means that most patients are able to resume normal lives after their transplant surgery. They no longer will need to rely on total parenteral nutrition (TPN), but instead can enjoy eating again. Of course, patients will be followed for a lifetime by our medical team, and they will need to stay on a careful regimen of medications. Patients will learn about the signs and symptoms of rejection and infection, and they will become an active participant in their own care. Most adult transplant patients are able to return to work. The time until return is quite variable.

Follow-Up Care

General

Signs and symptoms of problems such as rejection can be subtle and difficult to detect early. Delays in recognition and diagnosis of problems can be life-threatening.

First Postoperative Months as Outpatient

Most intestinal transplant recipients will remain in the Cleveland area for a minimum of three months after discharge. Laboratory testing will be performed twice a week unless otherwise clinically indicated. The patients will also be seen at least once a week in the clinic. Please contact your social worker or coordinator to discuss options for assistance regarding the cost of local housing.

First Postoperative Year

Patients will be seen in clinic every one to four weeks. Laboratory testing usually occurs on a weekly basis. All test results should be forwarded to Cleveland Clinic. It may be possible for the recipients to be seen by their referring gastroenterologist (this is to be determined on an individual basis).

Beyond First Postoperative Year

Depending on the condition of the patient, visits are a minimum of four times a year. Laboratory testing should be performed on a weekly to monthly basis.