Post-Transplant Follow-up

Did you know? The most common organ of the human body that is given by a living donor is the kidney.

After I am discharged, when will I be seen at DTI?

After you are discharged from the Transplant Center, you will be seen an average of three times a week at Dallas Transplant Institute for the first several weeks. You may need to come to the clinic between visits for blood tests to check your medication levels. When your kidney function has stabilized, you will be seen less often, but followed closely. The physician will determine your next appointment after examining you and reviewing your laboratory tests. As long as you have your transplanted kidney, you will need regular physician visits.

Will I have any special tests after I leave the hospital?

A Glofil test (measurement of kidney function) will be scheduled periodically to give us further information about how well your kidney is functioning. Other diagnostic tests such as EKG’s, x-rays, etc. will be ordered as necessary.

Who takes care of me at the DTI clinic?

You will be examined by a transplant team member composed of transplant nephrologists, physician assistants, and nurse practitioners. A different team member may evaluate you on each of your clinic visits. Also assisting in your post-transplantation care are dedicated staff of nurses, social workers, dietitians, and laboratory and clinic personnel who are trained in the area of transplantation.

How can the social worker assist me after transplant?

Kidney disease can change your life. Transplant is another change that can bring new challenges. The social worker can work with you to help return you to your normal activities.

Areas where the social worker may help you:

  • Concerns about your job
  • Your marriage and family life
  • Information about healthcare decisions
  • Changes in your role in your family
  • Finding outside help when needed
  • Dealing with all of the changes in your life
  • Return to employment
  • Making the best use of your medication coverage
  • Assist you in wellness and exercise

There may be difficult social, personal and financial issues. Working as part of a team, with YOU as an active member, the transplant social worker can help you live life to the fullest!

When can I resume driving?

During the first 4-6 weeks after your transplant, you will not be able to drive.

When can I return to my primary care physician?

Once your medication blood levels and blood chemistries have stabilized, you will be encouraged to return to your referring physician for continued follow-up. Information regarding your transplant surgery, current medications and lab results will be sent to your physician. Additional tests may be asked of your referring physician to be sent to DTI. You will still need to return to DTI periodically.

Who will take care of me when I return to my home if I am an out-of-town patient?

The physician who referred you for transplant will be responsible for your medical care when you return home. Initially you will alternate visits with your physician and DTI physicians. As your kidney function stabilizes, the visits to Dallas will become less frequent. You will be asked to return to Dallas should certain problems arise. (We recommend that you be seen at DTI twice yearly or a minimum of once yearly so that your medications can be refilled.)

When may I resume sexual relations?

After you are discharged from the hospital, you may resume sexual activity when your physician feels you are ready. Female patients need to use a reliable birth control method. (Please discuss this subject with your physician).

Will I be allowed to drink alcoholic beverages?

Alcoholic beverages in small quantities will do no harm unless liver problems have been diagnosed. Ask your physician or nurse before drinking any alcohol after transplant.

When can I go back to work? Are there any restrictions?

One of the goals of transplantation is to help patients return to a productive lifestyle. It is possible to return to work after the first six to eight weeks post transplant. Some patients return to work sooner. Consult with your physician for a “Return to Work” statement.

Should I tell the dentist I have had a kidney transplant?

Yes. If you have an appointment with the dentist, please notify the nurses at DTI. Dental procedures (even cleanings) place you at higher risk for infection. Antibiotics may be prescribed depending on your cardiac status.

What happens if I go out of town and have an emergency?

We recommend that you request a copy of your clinical summary and a medication list to take with you.  If you have an emergency, go to an emergency room.  Tell them you are a transplant patient and give them the phone number of DTI or your Transplant Center. (214-358-2300).  You should always tell the doctor what medicines you are taking. Do not let anyone change your medications until they have spoken with someone at DTI or the Transplant Center.

Can I be around large groups of people?

Avoid large crowds for the first few weeks after your discharge from the Transplant Hospital and any time you are treated for rejection. (DTI Clinic will be the exception.) Avoid contact with persons who have a communicable diseases (cold or flu). The higher doses of immunosuppressant medications make you more susceptible to infection.

Will I be on medications after the transplant?

You will take a combination of medicines after surgery to help your body accept the new kidney. Every patient is on a customized medication schedule. All immunosuppressive drugs increase the risk of infection and cancer. Ongoing research exists to better the outcome of transplants.

The medications are very expensive. You will meet with the transplant social workers during your evaluation and after the transplant to discuss your plan for paying for the medications.

Listed below are the most common medications currently being used:

  • Prograf/Astagraf XL(tacrolimus) – acts to suppress the body’s immune system. This drug is a small capsule. Side effects include tremors, possible toxicity to your kidney, high blood pressure, and increased stomach upset and diarrhea. (You may be taking either Prograf or Cyclosporine but not both medications.) The approximate cost per month for this drug is about $1350.
  • Cellcept / Myfortic (mycophenylate) – acts to suppress your body’s ability to fight the new kidney. This drug is available in both tablet and capsule. Side effects of this medication may include decreased white cell count (WBC) increased risk for infection and increased stomach upset and diarrhea. (You may be taking either Cellcept / Myfortis or Imuran but not both medications.) The approximate cost per month for this drug is $625.
  • Rapamune (sirolimus) – acts to depress the body’s immune system. This drug comes in both liquid and tablet form. Side effects may include increased cholesterol level and decreased platelet count. (You may be taking this medication along with Neoral, Prograf, CellCept and Prednisone.) The approximate cost per month for this drug is $550.
  • Zortress (everolimus) – acts to suppress the body’s immune system. This drug is used in the prevention of kidney transplant rejection in patient’s at a low to moderate immunologic risk. Also fights cancer by reducing cell growth.  The approximate cost of this drug per month is $1274.
  • Prednisone or prednisolone – reduces your body’s chance of attacking your transplanted kidney. This drug is a tablet. The dose is high at the time of transplant but is tapered quickly to a lower maintenance dose. Some of the more common side effects are: fluid retention, weight gain, night sweats, joint pain, mood swings, increased risk of bleeding ulcer, changes in eyesight, weakness of bones, and increases in blood sugar. Many of these side effects will decrease as the dose of the medication is lowered. The approximate cost per month for this drug is $10.
  • Sandimmune/Neoral (cyclosporine) – acts to suppress the body’s immune system. This drug is a gel capsule or liquid. Side effects may include excessive hair growth, increase in gum tissue, tremors, possible toxicity to your kidney or liver, and high blood pressure. (You may be taking either Cyclosporine or Prograf but not both medications.) The approximate cost per month for this drug is $750.
  • Imuran (azathioprine) – acts to suppress your body’s ability to fight the new kidney. This drug is a tablet. Side effects may include decreased white cell count (WBC), and increased risk of liver abnormalities and hair loss. (You may be taking either Imuran or Cellcept but not both medications.) The approximate cost per month for this drug is $45.

You may receive additional medications to prevent complications or to treat a current problem:

  • Insulin – increased blood sugar seen with steroid medication may require insulin treatment.
  • Antacids – coats the stomach to prevent stomach ulcers while you are on higher doses of steroids. Antacids can cause either constipation or diarrhea, which can be controlled by changing the dosage.
  • Mycostatin mouthwash (nystatin) or Mycelex Troches (clotrimazole) – helps prevent a fungal infection called thrush. Usually this medication is discontinued when steroid doses are reduced. Side effects may include nausea.
  • Valcyte – helps to prevent or treat cytomegalovirus (CMV) infections. Some patients may need this, while others may not. Usually this medication is taken from three to six months. The approximate cost per month of this drug is $4000.

Additional medications:

  • Blood pressure medicine
  • Medicine to increase your urine output.
  • You may be prescribed an antibiotic as a preventative measure while you are taking immunosuppressant medications.

Although many insurance plans cover medications, be prepared to spend several hundred dollars on medication when you leave the hospital.

PLEASE REMEMBER – IT WILL BE NECESSARY FOR YOU TO TAKE YOUR IMMUNOSUPPRESSIVE MEDICINES AS LONG AS YOU HAVE YOUR TRANSPLANTED KIDNEY. If you stop taking your immunosuppressive medicines – you will lose your kidney.

What is rejection?

Rejection is the body’s natural tendency to fight off your new kidney because it is foreign tissue. Rejection can prevent your kidney from working and even damage it permanently. Almost everyone has a rejection episode. Biopsy of the transplanted kidney may be needed to diagnose the type of rejection.

The two types of rejection usually seen are:

  • Acute – occurs most frequently during the first three months of transplantation but may occur after many months or years. Acute rejection is often associated with failure to take immunosuppressant medications as prescribed.
  • Chronic – continuous tendency to reject the kidney. Very often there are no signs or symptoms of rejection. This rejection is usually diagnosed by repeated laboratory tests. With careful medical treatment, this type of rejection process is often slow. The transplanted kidney may continue to function for several years.

To help prevent rejection episodes:

  • Take your medicines exactly as your physician tells you and record them daily.
    Never stop taking or change your medicines unless instructed to do so by your physician or nurse.
  • Do not take any prescription or non-prescription drugs (such as cold medicine, ibuprofen or aspirin) unless ordered by or approved by your transplant team.
  • If any physician outside of DTI or the Transplant Center where you receive your post-transplant follow-up care wants to put you on any additional medications for any reason, call DTI or your Transplant Center before you have the prescription filled.

Acute rejection often causes no symptoms. Occasionally some of the following signs and symptoms of rejection will occur:

  • Pain and swelling over the kidney
  • Decrease in urine output
  • Fever over 100 degrees
  • Sudden swelling especially in the face, hands and feet
  • Rapid weight gain
  • Increase in blood pressure
  • Cough or shortness of breath
  • General malaise – “just not feeling well” or “flu-like” symptoms

How is rejection diagnosed?

Rejection is usually diagnosed by a combination of signs and symptoms of rejection, laboratory studies, and often a kidney biopsy.

What is a kidney biopsy?

A kidney biopsy is the microscopic examination of kidney tissue. The traditional type of kidney biopsy is done with a biopsy needle, and a small piece of kidney tissue is removed. This procedure is done in the hospital.

How is rejection treated?

There are several medications available to treat rejection episodes. These medicines are given intravenously. These are very potent immunosuppressive drugs, which target the cells that are causing the rejection. The medicines you have been taking by mouth may be increased, decreased or discontinued during this therapy.

What happens if the transplant kidney fails completely?

If the kidney fails completely, the anti-rejection medications will be discontinued. In some cases, the transplanted kidney will be removed surgically because of possible complications. You will be placed on dialysis, and following a full recovery, you may be considered for another transplant.

If I lose my kidney, may I receive another?

You can be evaluated to determine the risks involved in giving you a second or even third transplant. It will be necessary to repeat a complete medical evaluation just as you did before your first kidney transplant.