Follow-up visits

At home

Blood test results

Healing after surgery

Future dental work

Transplant medicines

Possible complications after transplant

Check your vital signs regularly

Normal laboratory values

Follow-up visits
You will return to The Transplant Center about one to two weeks after you leave the hospital. At that time, the surgeon will check your incision and test results. You may also receive medicine or other treatments.

You must bring your medicine card and patient handbook to this and every visit. We will tell you about your future visits at that time.

At home
If your home is far from the Twin Cities, your care team will tell you when you’re ready to move back home. You may need to stay near The Transplant Center for a short time after leaving the hospital.

After you go home, you must see your family doctor regularly. He or she will have all the details from your transplant.

A home health nurse may come to visit for the first couple of weeks. He or she will help with routine blood tests, check your incision for infection, change bandages, review your medicines and provide other care. If have any questions, please call your transplant coordinator.

Blood test results
When you first go home, you will need to have your blood checked three times a week. We may also ask you to collect urine samples to bring to the lab. You will have fewer lab tests (blood and urine tests) over time.

You will need blood tests for the rest of your life, or as long as you pancreas functions. This will tell us how well your pancreas is working. Just because you feel well does not mean that your pancreas is healthy. If your body rejects the pancreas, there may be no symptoms.

You will need to write your lab results in your log book and call them in to the transplant office. The transplant coordinator will call you if there are changes or concerns. If you do not give us your lab results, we will not know if your pancreas is working well.

Healing after surgery
Your energy level will be low when you first return home. Keep in mind that you just went through a major surgery and will need time to recover. It may take three to six months before you start to feel normal again.

Please remember:

• You should not lift anything heavier that 10 pounds for at least six weeks after your surgery.
• You may not feel like eating much. Do your best to eat small meals and snacks throughout the day to maintain your weight.
• Some people have problems sleeping. If you need to take a nap in the afternoon, do so. Your energy will improve with time.

Future dental work
After your transplant, try to wait at least six months before seeing your dentist. You will need to take antibiotic (germ-fighting) medicine before every dental visit.

Transplant medicines
After your transplant, your immune system will see your new pancreas as something foreign. It may attack the pancreas, causing your body to reject it. To prevent or control rejection, you must take anti-rejection drugs (immunosuppressive medicines) for the rest of your life. If you don’t, you will lose the pancreas and get very sick. You may even die.

Possible side effects are listed with the drugs that follow. You may have more side effects right after the transplant, but these will often go away over time. We will adjust your medicines based on your regular lab tests. In this way, we strive to reduce side effects while preventing rejection.

You will take up to three anti-rejection drugs by mouth every day. Your transplant doctors will tell you which drugs are best for you. They will explain the side effects and tell you how to manage them. Your anti-rejection drugs may include:

• Cyclosporine A (CSA; Neoral, Gengraf) or tacrolimus (FK506; Prograf): You will need
  regular blood tests to check the level of medicine in your blood. Blood levels that are too high can cause side effects such as hand tremors, tingling or headache, high blood pressure, high potassium, high blood sugar or increased hair growth. Long-term use of this medicine can cause pancreas problems. Your doctor will watch for this.
• Azathioprine (AZA; Imuran): At first, AZA may cause your hair to thin. It can also decrease your white blood cell count. We may need to adjust your dose to maintain the right white blood cell count.
• Mycophenolate mofetil (MMF; CellCept): MMF may cause diarrhea (loose, watery stools), nausea (upset stomach) and vomiting (throwing up). It may also decrease your white blood cell or platelet count.
• Sirolimus (Rapamune, rapamycin): This may raise your cholesterol and triglycerides (blood fats). It may also decrease your white blood cell or platelet counts. Some people have mouth sores, muscle pain or diarrhea.
• Prednisone: In high doses, prednisone can cause slow healing. It can also cause increased appetite, weight gain, stomach irritation or ulcers, bloating, high blood sugar, bone and joint problems, sleeping problems, mood swings and depression. Most people do not take prednisone after leaving the hospital.

If you are thinking about having a baby, please talk to your doctor and OBGYN about your medicines.

Your anti-rejection drugs may reduce your body’s ability to fight infections. If you become ill, you may be sick longer than normal. To prevent some of the most common serious infections, you must also take:

• An anti-fungal medicine for three to six months (nystatin, Mycelex)
• An anti-viral medicine for three to six months (acyclovir, ganciclovir)
• An antibiotic for the rest of your life (Bactrim, Septra).

Your doctor may also give you medicine to control blood pressure and stomach acid. Both of these may be a problem after transplant.

Possible complications after transplant
While some problems might appear right after surgery, others may show up weeks, months and even years later. Most of the time your local doctor can treat any problems that occur. In some cases, you may need to return to the Transplant Center.

Infection
Call your doctor if you have any signs of infection such as:

• Fever over 101°F (38.3°C) (under the tongue), with or without chills
• High white blood cell count
• Pain or redness at the incision or drain site
• Cold or flu symptoms

Most infections can be treated with medicine from your family doctor.  For severe infections, you may need to return to the Transplant Center.

Rejection
A rejection may occur at any time. It is most likely to occur in the first three to six months after transplant.

You may have no symptoms if a rejection begins. It  is found with lab tests (blood or urine tests). You must have blood tests three times a week for the first month after your transplant. In time you will need lab tests less often -- about once a month for the rest of your life.

You may have the lab tests at your local clinic. Have the clinic fax us your test results. If you don’t, we will not know that you are having a rejection.

If you are having a rejection, it is vital to catch it early. This improves the chances that the problem can be treated. We will adjust your medicines. You may need to come to The Transplant Center.

The risk of rejection lessens with time, but it never goes away. As this risk decreases, so will your doses of anti-rejection medicines. As you medicines decrease, most of the side effects will get better as well.

If you ever stop taking your medicines, your body will reject your new pancreas. You will lose your pancreas, become very sick, and you may even die.

Organ failure
A pancreas can fail due to blood clots, rejection, pancreatitis (inflamed pancreas) and other causes that can’t be controlled.

If your pancreas fails, you will have to start taking insulin right away. You may need surgery to remove the failed pancreas. It may be possible to get another pancreas transplant.

High blood pressure
This is very common. It is more likely to occur in the first three months after surgery. Your doctors will use medicine to treat your blood pressure.

Blood in the urine (hematuria)
The color of your urine may range from pink to bright red. You may also have blood clots in the urine. This may be due to infection, rejection or the stitches used during surgery.

Cancer
Taken over many years, your anti-rejection drugs may increase your risk of cancer, especially skin cancer. For this reason, you should cover up before going out in the sun or use a sun block (at least SPF 15). Do not use tanning beds.

Your anti-rejection medicines may also increase your risk of lymphoma, a more serious form of cancer. You should see your doctor for a yearly exam.

Check your vital signs regularly
You will need to check your vital signs regularly, both before and after your transplant. You should have the following items at home:

• A thermometer to check your temperature. A high temperature or a fever can be sign of infection. After your pancreas transplant, it may also signal rejection.
• A scale to check your weight. Your weight may go up or down a little each day based on fluid changes in the body. This may occur months or years after transplant. You may also find that you have a better than average appetite. It is important to avoid gaining too much weight.
• A blood pressure cuff. Many things affect blood pressure, including hormones, medicines, fluid in the body and how well your pancreass are working. Your family doctor or pancreas doctor (nephrologist) will help you manage your blood pressure after your transplant. Please see your family doctor soon after you leave the hospital. Return once a year for a check-up.

Normal lab test values
For most blood tests, “normal values” vary from one lab to another due to different testing methods. The values listed here are current at University of Minnesota Medical Center since 2001. Some values are “off” or abnormal for persons with pancreas disease.

You will get to know your own normal values, close to these ranges, after the transplant. For a few tests, normal values have not been established.

Hematology blood tests
Hgb (hemoglobin)..................11.5 to 15.7 g/dl
Hct (hematocrit).....................35% to 45%
WBC (white blood count).......4 to 11 x 103/mm3
Platelets...................................150 to 450 x 103/mm3

Pancreas function tests
Amylase....................................30 to 110 u/L
Lipase.......................................20 to 250 u/L
Urine amylase.........................Each patient establishes his or her own "normal"
C-peptide..................................0.9 to 6.9 hg/mL

Liver function tests
AST........................................0 to 45 u/1
ALT........................................0 to 45 u/l
Alk p’tase
(alkaline phosphatase)..........130 to 530 u/1
Bilirubin direct (conjugated)....0.0 to 0.4 mg/dl
Bilirubin total.........................0.0 to 1.3 mg/dl
5’ Nuc....................................0 to 12.0 u/l

Electrolytes and blood chemistries
Na (sodium)...........................133 to 143 mmol/1
K (potassium).........................3.4 to 5.5 mmol/1
C1 (chloride)..........................96 to 110 mmol/1
HC03 (bicarbonate)...............20 to 32 mEq/1
BS (glucose)............................60 to 115 mg/l00m1
BUN (blood urea nitrogen)....5 to 24 mg/dl
Cr (creatinine)........................0.4 to 1.0 mg/dl
Ca (calcium)...........................8.7 to 10.8 mg/dl
Phos (phosphorus)..................2.9 to 5.4 mg/dl
Mg (magnesium)....................1.6 to 2.3 mg/dl

Coagulation tests
PT..........................................11.0 to 13.5 sec
PTT........................................23.0 to 34.0 sec
TT..........................................13.0 to 18.0 sec
INR........................................0.89 to 1.09
Factor V..................................70 to 130%
Fibrinogen..............................170 to 370 mg/dl
Blood gases
pH..........................................7.35 to 7.45
p02.........................................85 to 105 mmHg
PC02......................................26 to 40 mmHg
HC03.....................................18 to 29 mmol/L

Other tests
Albumin.................................3.3 to 4.6 gm/dl
Total protein...........................6.0 to 8.2 gm/dl