Breathing Life into Lung Transplant Research!

After Your Transplant


Beginning Rehab   |   Rejection and Infection   |   Medications   |   Protecting Your Lungs   |   Returning to Everyday Activities   |   Nutrition   |   Food Safety   |   Ongoing Support   |   Traveling   |   Sexual Activity After Transplant   |   Pets

BEGINNING REHAB

After your transplant, your rehabilitation will begin while you are still in the hospital. When you wake up in the recovery room or ICU, you will have several IV lines, drainage tubes and perhaps an oxygen tank at first. Once you are stable, you will be moved to a step-down unit where physical therapists will get you up and walking with all of that in tow, usually within a day of surgery. They will help you sit in a chair, move your muscles so they do not atrophy, and help you mark milestones that will pave your way to walking out of the hospital.

When you are discharged from the hospital, many centers will require you to complete a set number of sessions in an outpatient pulmonary rehab program. Some will require you to attend a program at the transplant center. Others may allow you to attend a program closer to your home – if you had to relocate – but keep in mind that your transplant team may adjust your medications and schedule several checkups in the first three months, so it may be wise to live near the transplant center for the first few months immediately after your surgery.

Rehab is often a wonderful time in the transplant journey, because even in the beginning, you may have stamina to do more than you could do before your surgery. However, this is also a time when you must take things slowly. You may feel weak and drained at first, because a transplant is traumatic to your body. Even weeks removed from surgery, you will likely still be sore at the surgical sites, and weak from lack of exercise or from transplant medication side effects.

Each patient’s range of mobility differs after surgery. Therefore, it is important to establish a baseline when you begin working so you can monitor your progress. Try not to compare your progress to others’, and do not be disheartened if you are unable to walk as quickly or lift as much as you were before the transplant. Shortness of breath at first is also not uncommon. Your new lungs will need to expand, and your body will have to retrain your brain to know that you are moving much more air than before. Your breathing, strength and stamina will improve as you continue to work out. Some patients, typically younger ones, may improve significantly within weeks. For others, it may take up to a year or more to fully regain their strength.

After the transplant, you will be expected to monitor your weight, temperature, blood glucose level, blood pressure, and breathing with a microspirometer daily. Routine attention to these tests will allow you to identify a problem even if you are not experiencing symptoms of an illness. You will have goals for physical fitness to accomplish before you can graduate from your rehab program, but with success from the surgery, these goals are easier and often pleasurable to accomplish.


REJECTION AND INFECTION

Post-surgery, you will require anti-rejection drugs to suppress your immune system so your body won’t reject your transplanted lung(s). Because your immune system will be suppressed, you will be more prone to infection, especially during the first three to six months after transplant.

Your transplant team will follow your progress closely for a minimum of three months. You will be required to have frequent blood tests to adjust medication levels and monitor for signs of rejection. Early symptoms of rejection include flu-like symptoms, fatigue, shortness of breath, cough, chest pain and a fever over 100. It is not uncommon to experience rejection in the first few months. You should contact your transplant coordinator immediately if you experience any of these symptoms.

Also call your coordinator if you experience what could be symptoms of an infection: fever, chills, redness, swelling, bleeding or drainage from your incision site, an increase in pain around the incision site, or difficulty breathing.

Your doctors will monitor you closely in the first year. Your follow-up visits may include pulmonary function tests, chest X-rays, bronchoscopies and biopsies of lung tissue to monitor for rejection and infection.


MEDICATIONS

After you receive a transplant, medications will become a significant part of your life. Your transplant team will help you manage and understand your medicine.

Medicine you required prior to your surgery may no longer be necessary. Discuss all of your pre-transplant drugs with your doctors after the transplant. When you begin taking medication that is new to you, you will 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.

To help the transplanted lungs survive in your body, you will be given medications for the rest of your life to fight rejection. Some of these drugs can adversely affect the kidneys and other organs. After returning home, you will need monthly blood tests to monitor the levels of your anti-rejection drugs.  Not only do levels fluctuate, but as your body adjusts to living with transplanted lungs, the amount of medication required to maintain your transplanted organ(s) will decrease.

Each person reacts uniquely to medications, and each transplant team has preferences for different drugs. The anti-rejection medications most commonly used include Cyclosporine, tacrolimus (Prograf, Advagraf, Protopic) Sirolimus, Azathioprine, Mycophenolate mofetil and prednisone. New anti-rejection medications are continually being developed and approved. Usually, several anti-rejection medications are given initially. The doses of these medications may change frequently, depending on your response. Carry a list of your current medications with you at all times. Never change or double the dose of your medications, and ask your coordinator what to do in the event that you accidentally skip a dose. You should never start an over-the-counter medication without consulting with your transplant team first. A class of drug called NSAIDs, (nonsteroidal anti-inflammatory drugs), which include aspirin, ibuprofen and naproxen, is contraindicated with transplant drugs.


PROTECTING YOUR LUNGS

Because anti-rejection medications suppress the immune system, people who receive a transplant are at higher risk for infections. Some of the infections you will be especially susceptible to include oral yeast infections (thrush), herpes, respiratory viruses, and fungal infections. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery. The more immunosuppressed you are, the more at risk you are for infection. Your doctors will try to maintain a balance between preventing rejection of your new lungs and making you susceptible to infection.

Research has shown that gastroesophageal reflux disease (GERD) can damage your new lungs because acid in your stomach can be aspirated into your lungs. If you tested positive for reflux prior to your transplant, you may need a surgery (such as a Nissen fundoplication or a LINX procedure) to treat your reflux disease a few months after your transplant. These surgeries are normally performed laparoscopically through a series of small incisions.

Second-hand smoke is dangerous to your transplanted lung(s). Maintain a smoke-free home and work environment and avoid areas where people are smoking or burning yard waste.

After your transplant, your dedication to your own self-care is 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 seeking support. Your transplant team will be with you every step of the way to answer questions and offer guidance and care.


RETURNING TO EVERYDAY ACTIVITIES

As you feel better, you can return to your previous activities, but remember to pay attention to your body, as recovery can be slow. No two lung transplant experiences are the same.

Your center will provide you with individualized guidelines for returning to normal activities. Typically, after surgery, you will be instructed not to lift more than 5 pounds for several weeks. You will probably be told to avoid strenuous physical work for six to eight weeks after surgery, and to not drive for at least six weeks. A family member or friend will need to transport you during this time. Follow your doctor’s guidelines regarding your level of activity and returning to work.

Exercise is very important to overall health and mental wellbeing. You can gradually increase your physical activities after your incision has healed. As a general rule, you should avoid rough contact sports because they might cause injury to your transplanted lung. If you have doubts about any activity, ask your doctor or transplant coordinator.

Call your doctor if you have a fever; have a cough that is different from other coughs you had before the transplant; are feeling overly tired or short of breath; are dizzy; or have any sores, blisters, new growths or lumps. Some of the medication you will be on increases your risk of cancer, so you should regularly check your neck, armpits, and groin. Women should check their breasts and have yearly mammograms. Also, go to the emergency room if you have a cut that is deep or bleeds heavily.


NUTRITION

Diet and nutrition are very important aspects of everyday care after a lung transplant. Some of the medications that you are taking can cause an increase in your appetite, high blood pressure, high blood sugar, high or low potassium, or fluid retention. Now that you have had your transplant and your condition has improved, you will need to pay more attention to food labels.

Some drugs (cyclosporine or Prograf) can increase the potassium level in your blood. Other drugs (such as Lasix) can decrease your potassium level. When potassium is too high or too low, problems with muscle and heart function can develop. Your serum potassium level can mandate a change to your medication and/or diet. If your potassium levels are not within the normal range, you should consult with a nutritionist to adjust your dietary intake of potassium.

In general, fruits and juices high in potassium include: apricots, melons, prune juice, avocados, nectarines, tomato juice, bananas, oranges, V-8 juice, tomatoes and dried fruits. Vegetables high in potassium include leafy greens, potatoes, dried beans, pumpkins, split peas and lentils. Nuts, chocolate, peanut butter, milk and dairy products are also potassium-rich.

Another element you will need to watch is sodium. Sodium can cause you to retain fluid and it contributes to high blood pressure. Your doctor may recommend a low-salt, low-fat, or low-cholesterol diet to reduce your risk of complications from high cholesterol, infections, diabetes and obesity.

The goal of any good diet is to reach and maintain your ideal body weight while getting the nutrients your body needs. You may need a dietitian to help you determine what your diet should be. After your transplant, you will take prednisone, which may increase your appetite in a way you’ve never experienced before. A dietitian can help you strategize how to satisfy your cravings without gaining too much weight. If you need to gain weight, the transplant team will recommend ways to do that, too. Prednisone is often associated with an increase in the level of sugar in your blood, and you may need to reduce the number of concentrated sweets and sugars in your diet. Your physician or dietitian will help you formulate a dietary plan that is suitable for you.

If you are already at your ideal body weight, a good diet (along with exercise) will help you maintain it. Most of the calories you will need daily are to maintain your muscles. Because prednisone can decrease your muscle mass, it is important to remain active to adequately protect your muscles. Getting into a routine of exercising a few days a week will help you gain strength.

Alcohol is contraindicated after transplant because of the medicine you will be taking. Some centers recommend that you should abstain entirely from drinking alcohol. Your medications may not be the same as another patient’s, so follow your team’s advice. If you find you have a problem controlling your drinking, seek help immediately to protect your health.


FOOD SAFETY

As an immunosuppressed person, you will have to be mindful about your food preparation. Wash your hands frequently when working with food. You doctor may advise you to avoid raw fruits and vegetables for several months after your transplant because of the risk of catching an infection. Once you are cleared to eat them again, you will need to make sure they are washed properly. If you are going to a gathering where there is food, do not eat out of a bowl of food in which people have reached their hands, such as chips. Buffets contain an inordinate number of germs, and your doctor may advise you to avoid them altogether.

Practice common-sense food safety in general, such as avoiding cross-contamination between raw meats and other foods. Because of the risk of infection, you should not eat raw or undercooked meats such as sushi after your transplant. When you eat deli meat, you should heat it in the microwave for a few seconds to kill listeria, which can live on lunch meats in the refrigerator.

Make sure your water supply is safe, and if you travel to a location where the water safety is questionable, drink bottled water.

There are some foods that you will have to avoid completely, including grapefruit and grapefruit juice because they may interfere with your medication. Your transplant team will give you comprehensive guidelines about what foods to avoid and which foods to enjoy.


ONGOING SUPPORT

Transplant center-specific support is designed to offer support and education to lung transplant recipients, candidates and their families by providing a forum for sharing information and experiences. A support group helps you and those close to you better understand and cope with issues and concerns associated with lung transplant. Long-term support is more often provided by internet support groups via listservs, message boards and Facebook groups. Common post-transplant topics include lifestyle changes caused by transplant, financial concerns associated with transplant, side effects of medications, fear of organ rejection, and prevention of infection. People often also share their triumphs and milestones, such as being present at births, graduations and other important life events, playing sports, participating in the Transplant Games, hiking, swimming, raising children, traveling, and working.


TRAVELING

One of the most pleasurable post-transplant gifts is the ability to travel again without the encumbrance of oxygen. But there are still important things to remember: When you fly, you should keep your medications in your carry-on luggage. Always take extra medication with you in case a flight is delayed or another unforeseen circumstance arises. If you travel internationally, consult your transplant team about the risks of visiting different countries. You should also educate yourself about the local hospital system in which you will be traveling and whether there is a lung transplant center. Having this information before you travel “just in case” can give you peace of mind and save time if you find yourself in an emergent situation.

Many vaccines are not safe for post-transplant recipients to receive. Travel restrictions for you may be different than for other recipients due to differences in drug regimens and stability.

Wearing adequate sunscreen is very important after transplant, in summer and winter, at home and on vacation. Some of the medications you will be taking increase your chances of getting cancer, and skin cancer occurs at a higher rate among transplant recipients relative to non-transplant patients. Don’t forget to cover your ears, scalp and lips with sun protection.

How soon may you take a vacation? Ask your doctor. You may be cleared to travel as soon as you are feeling better, but always take the phone number for your transplant center with you and wear emergency medical identification for your safety.


SEXUAL ACTIVITY AFTER TRANSPLANT

You may resume sexual activity after your incision heals, usually about six weeks after surgery. There are usually no restrictions on resuming sexual activity. To avoid straining yourself while recuperating, you might want to use a low-stress position. Pain is a good indicator that too much stress is being put on the incision.

Your doctor may recommend that you use condoms to prevent infection. Report genital rashes, sores, unusual discharge, or yeast infections to your transplant coordinator.

For female patients, even if your periods seem to have stopped, you should always use a safe and effective method of birth control after transplant surgery. Some physicians may not recommend birth control pills because of the added risk of side effects.

Pregnancy is not recommended, especially within one year after transplant surgery. The medicines you take after surgery are harmful to a developing baby, and the stress of pregnancy on your body can be harmful to your health.

If you desire to have children after your transplant, there are other options, such as adopting or serving as a foster parent. You can discuss these options with your transplant coordinator or social worker.

Male transplant patients might experience difficulty with erections after surgery. This might be caused by a reduction of blood flow to the penis, or it might be a result of the transplant medicines. In most cases, this situation can be corrected. If impotence becomes a problem for you, discuss your concerns with your doctor or transplant coordinator.


PETS

Your pet may have been with you through the worst of your pre-transplant days, and pets can play a special part in your healing. But they also can pose risks to your health. Ask your transplant doctor how to minimize those risks to protect your health.

In general, you should avoid letting animals lie on your bed or where food is being prepared. As a post-transplant patient, you should not handle litter boxes, and you should not allow animals to lick your face. Some vaccines for pets may pose risks to an immunosuppressed person. Ask your physician for advice if you have a pet.

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