As you recover from surgery, the transplant team will follow you closely. In the first few weeks after transplant, you will be seen frequently in our outpatient clinic. If you live outside the St. Louis area, you can arrange temporary lodging near the hospital for the first few weeks of observation.
Once you are home, you will be in regular contact with your nurse coordinator. You will return periodically to Barnes-Jewish Hospital for follow-up exams.
Throughout the entire transplant process, the transplant team will continue to communicate with your primary care physician. Over time, routine care will be transitioned to your primary care physician. However, for continuity of care and to ensure the best outcome for you, we will follow you for the life of your transplant, while working closely with your primary care physician.
After transplant, your decisions and dedication to your own self-care will be vital to your health and the success of your transplant. You can help yourself by taking your medications as directed, being aware of side effects or signs of rejection, following a healthy lifestyle with good nutrition and exercise and by seeking support. And our transplant team will be with you every step of the way to answer questions and offer guidance and care.
Nutrition and exercise
As a transplant recipient, medications will become a significant part of your life. Our transplant team will help you manage and understand your medications. We also will advise you about taking any over-the-counter medications.
You will require anti-rejection medications to suppress your immune system so your body doesn't reject the transplanted kidney. Because your immune system is suppressed, you will be more prone to infection, especially during the first three to six months after transplant.
While you're taking medications you need to carefully monitor and report any unusual side effects to your nurse coordinator. Side effects vary by dosage and type of medication. Ask your nurse coordinator or doctor any questions you have about your particular medication.
With the changes to prescription drug coverage through Medicare Part D (effective Jan. 1, 2006), more people than ever are eligible for drug coverage. Find out if the immunosuppressive drugs needed after transplant are covered.
Because a transplanted kidney and pancreas are considered "foreign objects" to your body, your immune system may reject the organs. To protect the transplanted kidney and pancreas, you will take medication to suppress your immune system so the rejection resolves.
The risk of rejection decreases over time, but can occur at any time. It's important to follow all medication regimens and physician orders to prevent rejection, and to recognize the early signs of rejection.
Early symptoms of pancreas rejection include:
- Abdominal pain
- Elevated blood glucose (sugar levels)
Early symptoms of kidney rejection include:
- Pain or tenderness over your kidney transplant
- Less urine output than usual
- Swelling of hands or feet
- Sudden weight gain
- Elevated blood pressure
If you experience any of these signs of rejection, call your transplant nurse coordinator immediately. Rejection must be treated as soon as possible to avoid complications. It is usually treated by temporarily increasing the dose of your anti-rejection medication or by using a combination of medications.
In addition to the symptoms above, you should call your transplant coordinator anytime if you have:
- Fluid retention/a bloated feeling
- A cough that produces a yellowish or greenish substance
- A dry cough that continues for more than one week
- Nausea, vomiting or diarrhea
- An inability to take prescribed medications
- Bleeding, bruising, black stools or red or rusty-brown urine
- Rash or other skin change
- Vaginal discharge or itching
- Burning discomfort when you urinate
- Exposure to mumps, measles, chicken pox or shingles
- Unusual weakness or light-headedness
- Emergency room treatment or hospitalization
The Kidney Transplant Support Group is designed to offer support and education to Barnes-Jewish Hospital kidney transplant recipients, candidates and their families. This support group also is appropriate for patients who have had kidney/pancreas transplants. By providing a forum for sharing information and experiences, the support group helps patients and those close to them better understand and cope with the issues and concerns associated with kidney transplant.
The group is a mix of people in various stages of the transplant process so members learn firsthand about what to expect during the transplant experience. Group leaders, members and guest speakers explore the physical and emotional concerns that accompany kidney transplant. Some common topics discussed at monthly meetings include:
- Lifestyle changes caused by transplant
- Financial concerns associated with transplant
- Transplant surgery
- Side effects of medications
- Fear of organ rejection
The Mentor Program at Barnes-Jewish Hospital is a valuable and unique program designed to provide information, guidance and emotional support to those involved in the transplant process. The mentors at the foundation of the program are patients who have already successfully gone through transplant. They can provide a great source of encouragement and understanding for new patients.
The confidential Mentor Program offers a social network of peers that helps those experiencing the process in overcoming the sense of being alone, and encourages them to stay active before and after transplant. Mentors can provide firsthand knowledge of the process, plus information about logistical matters such as places to live while in St. Louis for transplant, how to work with the transplant team and their own experience with certain medications.
Nutrition and exercise
As you recover from transplant surgery, it is normal to feel tired or weak. With regular exercise and good nutrition, you will eventually get back to a more normal, active routine. Most patients are ready to return to work or school within two to three months after transplant, although it may take longer to build your energy and endurance.
In the hospital, you will receive physical therapy to help you regain your strength. Once you're home, the best activity in the first few weeks is walking. You should avoid strenuous activity and heavy lifting for the first six months after transplant. Activities and sports that pose a high risk of injury should be avoided entirely.
After transplant, your body has increased nutritional needs to allow for healing and to fight infection. You also need to rebuild muscle tissue and restore protein levels. Your transplant team dietitian will develop a diet plan specific to your needs to help in your recovery and keep you healthy after transplant. The dietitian also can help you with any special dietary instructions or diets to manage co-existing medical complications such as diabetes, high blood pressure or high cholesterol.
The Barnes-Jewish Hospital Transplant Center accepts most insurance plans. However, insurance companies periodically change their coverage. Please verify your insurance coverage with your provider. For more help with insurance issues, our financial counselors who specialize in transplant coverage will work with you to understand the financial aspects that come along with your transplant.
We follow you closely for the life of your transplant, which is one important reason why patients in our program have excellent overall success rates. Long-term care is provided by a certified clinical transplant coordinator (CCTC) and a team of specialized transplant nephrologists who work with your primary care physician, primary nephrologist and endocrinologist.
For more information on the kidney or kidney/pancreas transplant program at Barnes-Jewish Hospital, call 314-TOP-DOCS (314-867-3627) or toll-free 866-867-3627.