At home

Blood tests

Follow up visits

Healing after surgery

Future dental work

Transplant medicines

Possible complications after transplant

Check your vital signs regularly


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 two to three months after leaving the hospital. During this time you will come to clinic often.

Blood tests
You will need blood tests for the rest of your life. This will tell us how well your medicines are working.

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.

Follow up visits
After the first three months, you must return to the Transplant Center every two months for one year. After that, you will come less often. You will be seen more often if you have any special problems.

You will start seeing your family doctor again after the first three months. Your doctor will check your heart, blood pressure, cholesterol and general health. The Transplant Center will provide care for you new organs.

Report any new medicines to your transplant coordinator. Some medicines may change how your transplant drugs work.

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 you return home.
• 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.

The first year may be difficult. You will have many doctor visits and lab tests. Taking your medicines, having monthly blood tests and watching for problems will soon become your lifelong routine.

It is very important for you to take part in your post-transplant care. Please stay in contact with your transplant coordinator. This will likely improve your long-term outcome.

Future dental work
During the first six months after your transplant, you will need to take antibiotic (germ-fighting) medicine before any dental visit.

Transplant medicines
The cells in your body that fight infection and attack foreign matter will consider your new organs to be foreign as well. These cells can attack the new tissue. If not controlled, they could cause the body to reject the new organs.

To prevent or control rejection, you must take anti-rejection drugs (immunosuppressive medicines) for the rest of your life.

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. Regular check-ups may prevent side effects or catch them early so they can be managed.

After a lung transplant, most people take 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.
• 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.
• 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.

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

Possible complications after transplant
While some problems might appear right after surgery, others may show up weeks, months and even years later.

Infection
The medicines used to prevent rejection will increase your chances for infection. To reduce your risk of infection, wash your hands often and avoid people who are ill. You must check your temperature daily. Call your coordinator if you have any signs of infection such as:

• Fever over 100.5°F (38.3°C) (under the tongue)
• Chills
• Shortness of breath
• High white blood cell count
• Pain or redness at the incision site
• Nausea, vomiting or diarrhea
• A change in the color or amount of sputum (the phlegm that comes up when you cough).
• You “just don’t feel right.”

Rejection
Rejection is your body’s normal response to foreign tissue (such as a new lung or heart). Rejection may occur at any time. It is more likely to happen if you don’t take your medicines as directed. As time goes on, your chance of rejection may decrease, but the risk never goes away.
 
If you are having rejection, it is vital to catch it early. This improves the chances that the problem can be treated. We will watch you closely for rejection. We will use these tests:

• Pulmonary function tests (breathing tests to see how well your lungs are working.)
• A lung biopsy. We do this with a bronchoscopy. (We take a small lung sample by inserting a long, thin tube through your nose and down into your lung.) We often get the results back on the same day. Only a biopsy will tell us for sure if you are having a rejection. If you are, you will be treated with medicine.

If you ever stop taking your medicines, your body will reject your new organ. This could be life threatening.

High blood pressure
This is very common after transplant. If you are being treated for high blood pressure, we may need to adjust your medicines.

High blood sugar (diabetes)
You may need to take medicine to treat high blood sugar. This could include pills or insulin.

Kidney problems
Anti-rejection drugs are often hard on the kidneys. If your lab tests show kidney problems, we may change your medicines.

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. You should see a skin speicalist (dermatologist) for a yearly exam.

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 transplant, it may also signal rejection. Report any fever over 100.5°F (38.3°C) to your transplant coordinator right away.
• A scale to check your weight. Your weight may go up or down a little each day based on fluid changes in the body. Many patients have a poor appetite right after surgery. Eating small meals often will help you get the calories you need to heal. Months or years later, you may 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 kidneys are working. Your family doctor will help you manage your blood pressure after your transplant.

Some people will also use a spirometer (device to test your breathing at home). This measures how much air moves in and out of the lungs.