Fact Sheets

After Transplant

Overview of the Surgical Procedure

Once you have been gotten the call, arrived at the hospital, gone through the pre-operative workup and the donor lungs have been established as being good for transplant you will be moved to the operating room. There you will undergo general anesthesia (be put to sleep) and will be placed on a ventilator and bypass machine in order to deliver oxygen to your blood while the transplant is taking place. Patients typically spend 5–9 hours in the operating room and remain in the hospital for 14–18 days. There are four different types of lung transplants available to PH patients:

• For a single-lung transplant, an incision is made below your shoulder blade and along the side of your chest. The surgeon removes your old lung and sews the new lung in place, connecting the blood vessels to and from the lung and the main airway. At the end of the operation, the surgeon brings the ribs back together and closes the incision.
• For a double-lung transplant, an incision is made across the middle of your chest, under your breasts, from one underarm to the other. The surgeon partially divides the breastbone and enters the chest cavity between the ribs. The surgeon removes the lung on one side and sews the new lung in place, and then does the same on the opposite side. At the end of the operation, the surgeon wires the breastbone together, brings the ribs back in place, and closes the incision.
• For a heart-lung transplant, an incision is made down the middle of your chest. The surgeon removes your old heart and lungs, leaving a “cuff” of the atrium and the end of the main airway to provide a place to attach your new organs. The surgeon also sews your aorta (the main blood vessel leading to your body) to the aorta of the donor heart. At the end of the operation, the surgeon wires your breastbone together and closes the incision.
• For a lobar transplant from living donors, three operations must be performed simultaneously. In two operations, doctors remove the lower lobes of the lungs from the two donors. The third operation typically involves removing both lungs in the recipient and replacing them with the donors’ lobes.

Most patients wake up two to 10 hours after their surgery is finished. Patients often report that they remember no pain from the actual operation. When you awaken in the intensive care unit (ICU), you will have what patients call a “zipper” on your chest. The location of this new scar depends on the type of transplant you had; it might be down the center of your chest, across your chest just under the breasts, or off to one side.

What to expect after surgery

The good news is that about 90 percent of lung or heart-lung transplant patients recover from the surgery. When you wake up, you will probably find a variety of tubes and monitoring equipment on your body. Some of these are as follows:

• A breathing tube goes down your airway (trachea) so that you do not have to expend too much energy breathing on your own. The tube may remain in place for as little as three to four hours, or it may be required for several weeks.
• A nasal/gastric tube passes through your nose and down to your stomach to allow for the removal of digestive fluids until you can take in food/fluids by mouth.
• Chest tubes are flexible tubes that pass through your skin around the area where the surgery was performed. They drain the blood and fluids in the chest cavity. These are removed when drainage stops, usually in several days.
• A Foley catheter will be placed in your bladder for two to four days to track how much urine you produce.
• Large intravenous catheters will be placed in your neck and arm. These allow the nurses to draw most of the blood samples used for tests, so you will not have a needle stick every time blood samples are needed. The catheters also allow for the administration of intravenous medicines, especially while you still have the breathing tube in and cannot take medicines by mouth.
• Wrist restraints will be gently tied as a precaution so you don’t pull or dislodge your breathing tube or other equipment as you wake up.

You may experience any of a number of symptoms after surgery and in the weeks following. These might include:

• pain or discomfort
• nausea or poor appetite
• increased heart rate
• lack of sleep
• strange dreams or hallucinations
• weakness or dizziness
• difficulty concentrating
• mood swings or altered personality.

Most patients are able to walk by the third or fourth day after they enter the ICU. When your tubes and catheters are removed and you can take all your medicines by mouth, you will be transferred to a room in the transplant unit. You will be continuously monitored for temperature, oxygen saturation, pulse, and blood pressure, and you will have frequent chest x-rays and blood tests.

Some patients are discharged in a week; some require a month or more to recover. According to the Duke Transplant Center, the average patient can walk a mile a day in two to four weeks after transplant. Lung transplantees usually find that the size and function of the right ventricle of their heart becomes much more normal, often within those four weeks.

The recovery process involves a combination of chest physiotherapy (CPT), exercise, and proper nutrition. CPT incorporates a number of activities that are designed to keep your lungs clear of secretions and prevent lung collapse and pneumonia. Activities include deep breathing exercises, use of an incentive spirometer, chest percussion, and coughing. You will also be given inhalation medicines; these will be set up initially by your nurses, who will later teach you how to use the medicines by yourself.

Medications

For transplant recipients there are lots of pills to swallow — some people take 12 pills a day, some 40, depending on what their bodies need. One of the primary roles these drugs play is immunosuppression. Your immune system is what protects your body from infection by recognizing and fighting foreign substances such as viruses and bacteria that enter your body.

Unfortunately, your immune system will recognize your new lung as a foreign object. Therefore, your doctors will give you medicines to keep your immune system from fighting (rejecting) your new lungs. The process of preventing your body’s natural immune response is called immunosuppression. Regrettably, these immunosuppressive drugs will reduce your body’s ability to fight off bad foreign substances, however. Thus it is very important that you take precautions to avoid infection whenever possible. Such precautions are discussed in the Factsheet “Life after Transplant.”

The three main immunosuppressive drugs used in lung transplant patients are Cyclosporine, Imuran, Mycophenolate, Tacrolimus, and Prednisone. See the table below for an explanation of these drugs. One thing that you will notice about the medications on this list is that some of them have many unpleasant side effects. On first looking at this list, the side effects of immunosuppressive drugs can seem more overwhelming than they usually are in real life. Not every patient experiences every side effect. Other drugs and things as simple as increased exercise can counter some of the side effects. Doctors are also learning to use multiple drugs to get a maximum anti-rejection effect with minimum side effects.

In addition to the medications listed below you may take a nystatin suspension to prevent fungus infections, Septra DS to prevent bacterial infections, Lasix to treat swelling and high blood pressure, Zantac to decrease the amount of acid in your stomach, and metered dose inhalers such as albuterol and atrovent to help keep your airway open and make breathing easier.

Immunosuppressive Drugs

Medication	Dosage & Details	Side Effects
Cyclosporine	It is available as a liquid or a capsule, both of which have very specific dosage instructions.  With either dosage form you use, it is very important that you take your Cyclosporine at regular twelve hour intervals.  Your transplant team will periodically measure the levels of Cyclosporine in your blood by doing a simple blood test	Flushing Hair growth on the face, arms, and body Fine hand tremor- if this continues for more than one month after your transplant or if the trembling increases notify your transplant coordinator Swelling of the gums Numbness, tingling, or burning sensations in the hands and feet Headaches High blood pressure High potassium levels Altered kidney function
Imuran	Imuran comes in a pill, and is taken in one dose in the evening	Decrease in white blood cell count Hair loss
Prednisone	Prednisone is typically taken as a tablet.  You will initially take a high dosage of prednisone which will be tapered off to minimize the side effects.	Increased appetite- it will be very important that you watch your calories and maintain your ideal weight Increased blood sugar level Change in appearance such as a rounded face, a larger abdomen and thin skin that bruises easily Increased stomach acid Increased sweating Acne on the face, back and chest Muscle weakness, particularly in the legs Eye problems Joint problems Delayed wound healing Emotional changes such as increased restlessness or moodiness
Mycophenolate	It is available in tablet or suspension and should be taken on an empty stomach 1 hour before or 2 hours after meals to avoid variable absorption.  You may be given either Myfortic or CellCept which have different tablet doses.	High blood pressure Risk of infection Headache Nausea and vomiting Diarrhea Swelling Insomnia
Tacrolimus	It is available in tablet or suspension and should be taken on an empty stomach 1 hour before or 2 hours after meals to avoid variable absorption.  Take this medicine at regular twelve hour intervals as your transplant team will periodically measure the levels of tacrolimus in your blood by a simple blood test.	High blood pressure Worsened kidney function Risk of infection Headache Nausea and vomiting Diarrhea Sunburn Constipation

Transplant Rejection

Eighty to Eighty-five percent of those who survive the transplant operation have a good functional status afterward and can do normal activities without difficulty. There is a small percentage of transplant recipients, however, who experience complications post-transplant. One of the most common complications in transplant recipients is rejection of the donated organ(s).

Rejection is the tendency of your body’s immune system to try to rid your body of your new organ because it is different from “you”; your immune system sees the new organ as an invader in the same way that it sees germs as invaders. Lungs are more likely than most organs to prompt this response, so rejection is more of a problem. Infact, episodes of rejection are expected, so do not be too alarmed if your doctor tells you that you are experiencing a rejection. You will be given medication to reduce the chances of rejection, and if you experience a rejection episode your doctor will adjust your medications to treat it.

There are two types of organ rejection:

• Acute rejection can happen at any time, but is most common during the first month after transplant. When treated early, it is curable.
• Chronic rejection involves the formation of nodular masses in the lungs, these masses lodge in the small air passages in the lungs and reduce the ability to breathe normally. Chronic rejection can only be cured with re-transplantation.

Because rejection often has no initial symptoms, you will need regular lung biopsies to check the status of your new organ. It can be strange to be feeling good — better than you remember ever feeling — and then have your doctor tell you that your breathing tests and your lung biopsy show rejection. When you have been sick for a long time with a disease you are familiar with, you have to relearn what is “normal,” so you can tell when your new lungs are not functioning properly. This can be scary, but you can learn to recognize the symptoms, when to call the doctor, and when to get to the hospital.

Symptoms of rejection include:

• Fever
• Shortness of breath
• Decreased exercise tolerance
• Decrease in FEV1 and FVC

Treatment of rejection involves three daily doses of an intravenous form of Prednisone called Methylprednisolone or Solu-Medrol. This may occur in the hospital, or if you are feeling well enough at home. After the third dose of Solu-Medrol your doctor will increase your oral Prednisone medication and then taper it back down as the rejection ceases.

Emotional Issues After the Transplant

Receiving a new organ is a wonderful gift, but the process of receiving and recovering from a transplant brings with it its own emotional struggle. After the transplant many factors may create emotional issues. Above all, transplant recipients should remember that everyone recovers from surgery at a different pace, and that it is completely normal to have good days and bad days. Furthermore, your transplant team will not simply disappear once you have been sewn up, they will be with you through the process of recovery, and as you go on to live your life with your new organ. The following are some common sources of emotional distress and tips for dealing with them:

• Pain management. Lack of pain control can lead to anxiety, agitation, or insomnia. Because transplant patients often experience some initial cognitive impairment as a result of their post-operative medications, it may be difficult for them to inform nursing staff about their need for pain relief. Also, some patients, caregivers, or family members may be fearful of addiction to pain medicines and may try to limit pain therapy. However, addiction to pain medication does not usually develop in patients who take these medications when they are experiencing pain.
• Mechanical ventilation. Use of a breathing tube can be very troubling for patients. Some patients do not like the total dependence upon a machine to breathe, and they may even fight against the ventilator. In addition, the inability to communicate can be stressful. It is helpful to learn about the ventilator and know what to expect so you can be prepared. Also, while using the ventilator you can communicate with pen and paper or by mouthing your words.
• The hospital environment. Simply being in the ICU can cause emotional distress for some people. The constant flow of strangers, unfamiliar surroundings, strange noises, and high-tech equipment can be unnerving. Again, communicating your fears can help you to feel more in control and less isolated.
• Medications and their side effects. Some of the drugs used for transplant recipients can have emotional effects. Immunosuppressants may cause restlessness, irritability, or moodiness, among other problems. These side effects are treatable, but to get help, you must tell your doctors what you are feeling.
• Complications. A transplant patient is susceptible to infections, episodes of organ rejection, and other complications that can cause anxiety, depression, or emotional distress. Know that these complications are expected and the staff is used to treating them, and that the problems will usually diminish with time. Some patients find it helpful to receive visits from other transplant recipients who have been through the process. These people can provide a great sense of hope and reassurance during your recovery.
• Mental adjustment. Some patients find it difficult to accept the new organ as part of them. They still see the organ as a foreign object. Some remain in denial about the new organ. This may be expressed by a lack of interest or curiosity about the organ donor. Some have feelings of guilt that they survived and someone else died.

Long-term emotional issues

Although the overall quality of life after transplant is often greatly improved, some emotional and physical problems can exist. Some fully recovered patients may have difficulty adjusting to functioning independently of caretakers. Alternatively, some patients may find that their family, friends, and co-workers still treat them as though they are ill, though they are fully recovered.

Physical ailments that develop after transplant (such as infection, rejection, or diabetes) can be a strain on the individual and may cause stress on familial or marital relationships. Financial pressures from the continued cost of transplant medications, changes in family roles, and other sources of stress can sometimes overwhelm families and marriages. Only a small percentage of patients return to work, even though a large percentage regains good physical health. Vocational rehabilitation as well as family counseling may be appropriate later in the recovery process. This information is not to suggest that transplant recipients are unhappy individuals. Receiving new lungs or a new heart and lungs can radically improve the life of the recipient. It is important, however, that transplant patients recognize the possible emotional impact of receiving a transplant.

Returning Home: Life 1 day -6 Months After Transplant

As you prepare to leave the hospital your transplant team will teach you how and when to take your medicines, how to care for your incision and cover the details of the recovery process. They will also give you a variety of instructions about everyday life post-transplant, and will schedule you for a variety of clinical follow ups, which will occur several times a week at first, and then slowly drop off until eventually you are visiting your transplant physician only bimonthly or when you have problems or questions. At these appointments you will undergo chest x-rays, blood tests, and walk tests, as well as lung biopsies to ensure that your body is not rejecting the new organ.

As with any major surgery your body will be a bit fragile as it recovers from the transplant operation. Therefore, during the first six weeks after your operation you should take the following precautions:

• Do not drive
• Do not lift more than ten pounds
• Do not perform strenuous household chores or garden
• Walk and climb stair at a comfortable pace and increase activity as tolerated each day
• Prior to resuming sexual activity consult your physician
• Check your incision daily and report any redness, swelling or pain to your transplant team
• Avoid crowds

Additionally, your transplant team will ask you to monitor your temperature, weight, blood pressure and lung volume on a daily basis. It is essential that you follow their instructions for monitoring and reporting any changes.

One final note to keep in mind as you begin the recovery process is that you will inevitably have good days and bad days. Do not get discouraged by days that you do not feel well physically or emotionally, this is a natural part of the healing process. Try to focus your energy on taking care of yourself and enjoying the benefits of your new lungs!

Living as a Transplant Recipient

As you transition back into your normal life there are a few precautions that you will need to take to ensure long-term transplant success. Because you will be taking immunosuppressive drugs to prevent transplant rejection you will be much more susceptible to infections that your body could normally fight off. Therefore, many of these precautions center on avoiding infections. While it may take a while to get used to these new precautions transplant recipients overwhelmingly report an improved quality of life. If you follow the tips below, and make sure you get plenty of sleep, exercise, good nutrition, and relaxation time you will greatly increase your chances at long-term success.

Around the house:

• Children of transplant recipients should not receive live virus vaccinations
• Do not change baby diapers
• Wash dishes in the hottest tolerable water, or use the hottest setting on your dishwasher
• Wear a mask and gloves while gardening; do not mulch
• Current pets should be checked by a vet for disease and have all vaccinations brought up-to-date
• Check with your transplant physician before acquiring new pets
• Do not change cat litter boxes, clean up after birds, or clean your pets’ ears
• Do not empty vacuum cleaner bags, change furnace filters, or clean very dusty areas
• Avoid inhaling strong fumes from cleaning products such as ammonia or bleach
• Vacuum your mattress once a month
• Wash your hands very frequently
• Do not get into the habit of eating after people, such as out of bags or bowls of snacks, or drinking after people

Outside of Your Home:

• Avoid people with contagious illnesses
• Wear a mask outside on windy days
• Avoid construction, demolition, or other high-dust areas. If you must pass by or through such an area wear a mask
• Do not swim in stagnant bodies of water such as lakes or ponds
• Wear shoes when outside to prevent infection due to breaks in skin
• Always where sunscreen SPF 45 or higher when going outdoors

First Aid and Hygiene:

• Clean and bandage cuts immediately and report any signs of infection to your transplant team
• If healing is prolonged or if you notice pain, swelling, redness, discharge, or other signs of infection notify your transplant team right away
• Notify the transplant coordinator if you notice any unusual rashes, blisters, or other lesions on your skin
• Visit your dentist every six months
• Notify your transplant coordinator if you notice sores, ulcers, or white patches in your mouth
• You may wear fingernail polish, but do not wear false nails or tips as they increase your risk of fungal infection
• Consult your transplant physician before you have any dental or surgical procedures done since you may need additional medications beforehand
• You and all of your family members should get a flu shot as soon as they are available each year

Cancer prevention:

Immunosuppressive medications may also increase your risk for developing cancer. For this reason you should always wear SPF 45 or higher when going outside, and women should do monthly breast self-examinations and have regular Pap smears and mammograms.

Nutrition:

Good nutrition is a very important aspect of caring for yourself after your transplant. Some of the medications that you are taking can cause an increase in your appetite, high blood sugar and fluid retention. It will be important that you heat a healthful diet to curb the potential harmful effects of these medications. The following are some guidelines for good post-transplant nutrition:

• Eat a low sodium diet
• Reduce the overall amount of saturated fats and cholesterol in your diet
• Reduce your intake of concentrated sweets and sugars
• Reach and maintain your ideal body weight
• Limit alcohol intake to one drink and only on special occasions
• Avoid raw seafood and rare meats
• Avoid fresh salads at restaurants

The final two tips are to prevent infection.

Sexual Activity:

Consult your physician before resuming sexual activity, you will need to be careful to minimize weight or strain put on your incision. Additionally the following precautions should be taken:

• Condom use, even in monogamous relationships. Because you are immunosuppressed, something as simple as a women’s common yeast infection could cause a serious infection in a male transplant patient.
• Birth control- pregnancy could be dangerous for a a females lung transplant patient, therefore condom use, and if you choose, supplemental birth control will be important if you choose to engage in sexual activity.

Medical Condition Alert Bracelet:

Though you may have had a Medical Alert Bracelet for PH, it is strongly recommended that you get a new bracelet to indicate that you are a lung recipient. The following information should be included:

Your Name
Lung transplant recipient
Immunosuppressed
Phone number of transplant center/transplant physician

Finally, if you ever experience any of the following symptoms, notify your transplant coordinator immediately:

• Temperature great than 100 F
• Productive cough
• Shortness of breath
• Sores, blisters or lumps
• Chills
• Flu-like symptoms
• Drainage or swelling from a cut or wound
• Nausea, vomiting, or diarrhea that lasts more than 24 hours
• Increase in fatigue
• Burning on urination
• Decrease in FEV1 and/or FVC by 10% in a 24-hour period, or a downward trend in FEV1/FVC results over three days or more
• Weight gain of more than three pounds in a 24-hour period.