“Because of all the IV meds I have taken over the years, my antibiotic choices have become very slim. The medications post-transplant have given me chronic kidney disease, high blood pressure and high cholesterol. All are being managed.”
— Lucy Fiorella,
lung transplant recipient
Navigation through the lung transplant process is often confusing and frustrating. An important part of our purpose is to offer helpful resources to lung transplant recipients, their caregivers, their families, and their friends.
Following is some information you may find helpful.
THE EVALUATION PROCESS
Because of a shortage of viable organs, there are criteria you must meet to qualify for a lung transplant. Transplantation is a major surgery that involves scarce resources, and a medical evaluation is important in determining whether you are ready for surgery. It is also crucial to your having the best possible outcome from a transplant. To qualify for a lung transplant, your lung function and overall health must be poor enough to justify the operation, but not too poor to survive and thrive after surgery. This optimal period for a transplant is often referred to in the medical community as “the window,” and your pulmonary transplant team will help you determine when you are in this window of opportunity. Physical, mental, and oftentimes emotional support is necessary from your caregivers to help you maintain your well being during this period.
The transplant team will order several tests during your evaluation. They may include:
- Tissue and blood typing
- Heart catheterization
- Esophageal manometry
- 24-hour pH study
- Psychiatric evaluation
- Gynecological check-up
These tests not only ensure that you will have the best chance of surviving, but they also give the transplant team an idea of how well you would cope both physically and mentally if given a transplant.
Part of the pre-transplant process that sometimes gets overlooked is the emotional component of your journey. Transplantation, despite providing a wonderful new lease on life, can be tremendously overwhelming. When you are in the worst health of your life, you have the added burden of wondering whether you will be put on the waiting list for lungs, and if you are, when your life-saving call will come. Your family and friends will probably be worried, and sometimes they may be far away if you have to relocate closer to your transplant center.
Throughout the evaluation process, you may feel a variety of feelings such as hope, fear, anxiety, stress, and homesickness, if you are required to relocate. Most centers have several staff members to help deal with these emotions. Also, a good pre-transplant rehabilitation program will focus on more than the physical aspect of preparing for a transplant. You will need to be in the right place mentally to undergo the surgery. In order to be motivated to physically rehabilitate, you will need hope and determination to prepare for the hard work ahead and stay focused on the reward of a new, more active life.
PRE-TRANSPLANT REHAB, OR “PREHAB”
Most lung transplant centers require you to meet certain exercise goals before they will list you for a transplant. These can include walking a predetermined distance in a given time, completing exercise classes, riding a recumbent bike and gaining or losing weight to optimize your chances for a successful recovery. These steps are often required when you are at your physical worst. You, therefore, may need more liters of supplemental oxygen to maintain adequate saturation while resting, and even more upon heavy exertion. Your body may be tired from a forced sedentary lifestyle brought on by failing health. You will be assessed for your oxygen needs and evaluated to establish a baseline for what you can achieve before surgery. Once listed, you must continue rehabilitation at an optimal level until the day you get the call for surgery.
WAITING ON “THE CALL”
Once you have been evaluated, have begun a physical therapy program, and have met the qualifications for a transplant, you will probably be waitlisted for lungs shortly thereafter. The timing of this can vary. Some patients’ cases are expedited, while others have the luxury of training to get into better physical shape before surgery. Once you are listed, the waiting period can vary from a few hours to several years. Your health might range from being stable enough to wait at home to being on life support at the transplant center.
Time on the waiting list is only one consideration in determining the likelihood that you will receive a call. Other factors that will be considered when your name comes up include tissue typing, the absence or presence of antibodies, chest cavity size, and your lung allocation score. There is no way to tell when organs will become available.
For example, if Chris, who weighs 200 pounds and is 6’5,”is first on the list and has been waiting longer than Lela, who is 5’4” and 115 pounds, but the lungs that become available are from a small-framed person and would fit Lela’s chest size better, then the lungs would go to her.
For more information, read the Questions and Answers for Transplant Candidates about Lung Allocation from the United Network for Organ Sharing (UNOS).
PACKING A BAG
Once you are waitlisted, you should pack an overnight bag and keep it somewhere where you can retrieve it quickly. Lungs will survive for a limited time outside the body. So once lungs are procured from a donor, the clock starts ticking. Items you should include in your overnight bag are:
- Your insurance card
- Photo ID
- Enough oxygen to get you to and from the hospital (in case the surgery is canceled)
- Medicine for 24 hours
- Phone numbers of friends and loved ones
- Your cell phone
GETTING THE CALL
When you get a call about a potential match, you will be asked to go to the hospital and wait. During this time, you will have several blood tests, a dose of anti-rejection medicine, and you may be given an anti-microbial soap with which to bathe. Meanwhile, several tests will be run on the donor and the organs themselves to guarantee viability. If, for whatever reason, the organ is not viable, this is known as a “dry run.” You may also experience a dry run if you are called in as a back-up patient and the patient ahead of you is able to receive the lungs. If this happens, the hospital will send you home to wait on the next call. If the organ is viable and a good match for you, then the team of nurses, anesthesiologists and other hospital staff will prepare you for surgery. They will start an IV, give you consent forms to sign and then take you to the operating room.
The very end of a patient’s time on the list before undergoing the transplant is often a joyous time. You may have time to reflect on what is about to happen, and you will be able to lay down the burden of being so sick.
PAYING FOR YOUR TRANSPLANT
The cost of a lung transplant in the United States varies among hospitals but is typically hundreds of thousands of dollars. When you add the costs of the medications that you will have to take afterward, the expenses in the first year alone can approach $1 million. Transplant centers have financial advisers on staff who will help you figure out how to pay for your transplant and after-care.
The money for your transplant will likely not come from only one source. Your pool of resources may include private insurance, Medicare, Medicaid, fundraising campaigns, and charitable organizations. It is important to educate yourself about your options. Research what your out-of-pocket expenses will be. Many plans pay 80 percent of the cost, leaving you to pay 20 percent. Some insurers will cover transplant related expenses, such as lodging and gas. Check to see if that benefit is part of your plan and ask whether there is a cap on how much the insurer will pay.
Many transplant centers require you to prove that you have a certain amount in the bank (or in a 401-k or IRA) before they will list you. The hospitals want to know that you will be able to pay for your medicine, travel, food, transportation, and lodging in the first year after the transplant. Without anti-rejection medicine after the surgery, your body will reject your new lungs and they will fail. The financial requirement, therefore, not only gives you the best chance for recovery, but it also ensures that scarcely donated organs will not be “wasted.”
If your insurance co-payment is a financial burden, ask your transplant center about creating a monthly payment plan for you. Propose an amount that you can handle. Hospitals are often willing to negotiate a payment plan.
Your transplant team realizes that the costs associated with transplantation can seem overwhelming. The team may direct you to several organizations that help transplant patients raise money. Some are free, and some may charge a fee. You can often fundraise online through these organizations, which may be easier for you and your donors.
LUNG TRANSPLANT FUNDING ASSISTANCE ORGANIZATIONS:
Second Wind Lung Transplant AssociationSecond Wind is dedicated to improving the quality of life for lung transplant recipients, lung surgery candidates, people with related pulmonary concerns and their families, caregivers and friends by providing support, advocacy, education, information and guidance through a spirit of service, adding years to their lives and life to their years. www.2ndwind.org
BEF / Lung Transplant Grant ProgramThe BEF Lung Transplant Grant Program is one way the Foundation works to give back to people with CF in the here and now, by helping families pay for the expenses that are not covered by their insurance. www.esiason.org
Patient Airlift ServicesProviding free medical flights to people who need to access medical care that may be too far to get to by car. www.palservices.org
Help Hope Live
Medical fundraising for the expenses insurance doesn’t cover helphopelive.org
Sell custom t-shirts and take donations with no inventory, hassles or risk. bonfire.com/ or customink.com/fundraising/
National Foundation for Transplants
Providing fundraising expertise and advocacy for patients in need of an organ transplant transplants.org
Children’s Organ Transplant Association
The Children’s Organ Transplant Association helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. cota.org
WCTF Helps Children
The World Children’s Transplant Fund (WCTF), is a nonprofit organization dedicated to the increase of life-saving organ transplantation for children around the world. www.wctf.org
American Transplant Foundation
For transplant recipients, we help patients to keep the organ that keeps them alive by providing assistance to cover delinquent insurance premiums to prevent loss of insurance coverage, medication co-payments during insurance gap periods, and/or changes to insurance provider. www.americantransplantfoundation.org
Some state programs offer financial assistance to residents needing a transplant, including Rhode Island, Massachusetts, and Georgia. Check to see if there is a program specific to your state, too.
In addition to employing one of these organizations, you could hold a community fundraiser to help with your costs. Patients have raised money through bake sales, yard sales, benefit concerts, and walks, for example. If you communicate your needs to the people around you, they will often rally to help. Your friends and family may feel helpless because they cannot do anything to improve your health, but they can organize fundraisers on your behalf.
Finally, think resourcefully. If you have a friend in the region of your transplant center and you have to relocate, ask him or her to spread the word that you are looking for temporary housing. Sometimes people will donate a room or a vacant house. Use social media to find connections. If you or a family member stays in hotels often, enroll in a rewards program and use the accrued points for lodging during your recovery period. The financial burden of a lung transplant is beyond most people’s normal scope of medical expenses. Don’t be too proud or embarrassed to ask for the help you need.
Medicare Patients’ Oxygen Rights – PDF
Preparing for a Lung Transplant – What to Expect – PDF
THE SURGERY BEGINS
Once you learn that a donor’s lungs are a viable match, you will be hurried into the pre-surgery area within minutes. You will be prepped with IVs in both arms and consulted by the doctors and nurses about what to expect next. Your groin area may be shaved to make a clean site for a femoral artery line insertion. Then you will be wheeled into the operating room, where you will be put to sleep. Nurses will insert the femoral catheter as well as one in your jugular vein. These lines will help the surgeon monitor your vital signs during the operation.
The surgeon will make an incision based upon the type of lung transplant you are having. For a single lung transplant, you will be cut on the coinciding side of your chest or back. For a double lung transplant, you will typically be incised under the breast line, from armpit to armpit, and across the sternum. This is called a clam-shell incision. In rare instances, during heart/lung transplants, the patient’s sternum is sawed in two, opening the chest up vertically for a maximum work area. You will be completely sedated for the duration of the surgery, with mechanical ventilation and/or cardiopulmonary bypass to oxygenate your blood.
You will undergo a lung perfusion test before the transplant to assess how well each of your lungs is functioning. In a single lung transplant, your worst lung will be removed. In a double lung transplant, your worst lung will be removed first, followed by your other native lung while your body “lives” off of the newly placed organ.
Once the lungs are in, your sternum will be wired with transverse wiring to reinforce your chest cavity. You will then be sewn up, and the surgeon will staple the outer layer of your skin together. You will still be ventilated, sedated, and heavily medicated during your surgery and immediate recovery. You will be connected to several machines. A patient’s instinct is to pull out tubes and catheters when he or she is sedated, so to prevent you from harming yourself, nurses may gently tie your arms to your bedside until you are fully awake and aware.
WHEN YOU AWAKEN
When you wake up in the recovery room or ICU, you will be closely monitored for at least several days. You will have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. You will be connected to monitors that will constantly display your electrocardiogram (ECG or EKG) tracing, blood pressure, breathing rate, and your oxygen level.
Your immediate family members should be able to see you when you wake up. Each hospital has its own policy on visitors, so it is advisable to check on your transplant center’s policy before your surgery.
You may have a thin, plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed. You will also have four to eight chest tubes in the sides of your torso to drain fluid around your new lungs. These will be removed before you leave the hospital.
Blood samples will be taken frequently to monitor the status of your new lung(s) and to check the functioning of your body’s other organs such as your kidneys, liver, and heart. You may be on special IV drips to control your blood pressure and your heart rhythms, and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as you can tolerate it. You will have several chest tubes protruding from your skin near your ribs that are inserted to drain air, blood, or infection from the space surrounding your lungs. You will receive pain medication as needed, administered either by a nurse, through an epidural catheter, or by clicking a device connected to your intravenous line.
Your immunosuppression (anti-rejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications. Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start drinking liquids. On occasion, a patient’s vocal chords are damaged during surgery, which can impair your ability to swallow. If this happens, you will be required to add a thickener to all liquids until your vocal cords are repaired. Afterward, your diet will gradually advance to more solid foods.
Your physical therapy will begin as soon as possible after you wake up. It may begin when you are still in the ICU or on a ventilator. Typically, when you have been off of the ventilator for 48 hours, you will be moved to a regular nursing or transplant unit. Nurses, respiratory therapists, and physical therapists will continue to help you with physical therapy and breathing exercises. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated. Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital. Lung transplant surgery typically requires an in-hospital stay of at least seven days.
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 the 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.
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.
The 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 the acid in your stomach can be aspirated into your lungs. If you tested positive for reflux prior to your transplant, you may need 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.
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.
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.
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.
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.
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.
“Rejection” is a word that someone who has had a lung transplant never wants to hear. It sounds scary — and it can be — because you want your body to accept your new lung(s) completely. When you hear the word “rejection,” you know that your body is having a problem accepting your new lung(s) as its own. Gaining an understanding of acute and chronic rejection will allow you to have an informed discussion with your doctor about treatment options.
As a lung transplant recipient, you will have scheduled bronchoscopies following your transplant. A bronchoscopy is a procedure in which, while you are typically under sedation, a tube is passed down your throat into your lungs. A small piece of your lung is snipped and biopsied to determine whether acute rejection is present. A lavage (rinsing) of your lungs is also done to determine if there is any infection in the transplanted lung(s). Per your transplant center’s protocol, you could have bronchoscopies daily (while in the hospital), weekly, or monthly during the first year post-transplant. After the first year, you may have a routine bronchoscopy at every annual visit. Or you may have a bronchoscopy only if rejection or infection is suspected (or if other problems are present, such as stenosis).
ACUTE REJECTION (T-LYMPHOCYTE REJECTION)
Around 60 percent of lung transplant recipients will experience an episode of acute rejection within the first year. Acute rejection is diagnosed by bronchoscopy results, a chest x-ray, and a drop in your Fev1 of greater than 10 percent. Your transplant team will tell you symptoms to look for that may indicate acute rejection. Treatment for acute rejection includes a high dose of corticosteroids. Usually this consists of three daily doses of intravenous Solu-Medrol, which may be done in a hospital setting or at home, depending on how you feel and your doctor’s preference. It is usually followed by a prednisone taper over the next few weeks until you are back down to your baseline dose. Follow-up bronchoscopies may be done to determine whether the rejection is gone. Unfortunately for some, treatment with corticosteroids may not rid your lungs of acute rejection. Other therapies that can be used if steroids do not help are cytolytic therapy such as rabbit anti-thymocyte globulin (RATG) or horse anti-thymocyte globulin. These are aggressive therapies designed to deplete your T-lymphocytes (which are the cause of most acute rejection episodes) and interfere with their normal function. If you need this therapy, you will be monitored in the hospital for the duration of the therapy (5-7 days). There may be some uncomfortable side effects from this treatment. Your doctor will discuss these with you and will also determine what prophylactic medications you may need to prevent infection following the treatment. Because depleting your T-lymphocytes weakens your immune system even further than your maintenance anti-rejection therapy, you will be at increased risk of infection for weeks to months following treatment. You will need to take the necessary precautions to avoid exposing yourself to infection. If you are still experiencing acute rejection following steroid treatment and anti-thymocyte globulin therapy, you may receive a drug called Campath (alemtuzumab). Campath is an extremely potent medication that can only be given in a hospital setting. It is given as a one-time dose, and can cause many side effects. Prophylactic medications must be given for several months to years after the dose is given, and your immune system will be severely compromised for a long time. You must use extreme infection control following Campath. Your doctor will discuss with you the medications you will be taking, how to avoid infections, and how to identify side effects and symptoms of infection.
Antibody-mediated rejection is another form of rejection. It is treated differently than T-Lymphocyte rejection. This form of rejection is caused by anti-HLA antibodies that target your transplanted lung(s). These antibodies can be present before transplant (especially if you have had a previous pregnancy, transplant, or blood transfusion) or can develop after transplant. Treatments for antibody-mediated rejection are different than those used for T-Lymphocyte rejection. Treatments can include plasmapheresis, intravenous immunoglobulin (IVIG), Rituxan (rituximab), and Velcade (bortezomib).
(Bronchiolitis Obliterans Syndrome) The lungs have the highest rate of rejection compared to all other transplanted solid organs. Therefore, life expectancy is shorter for those who’ve had lung transplants than for those who’ve had other solid organ transplants. The number one reason for this is chronic rejection, or BOS (Bronchiolitis Obliterans Syndrome). BOS is present in approximately 48 percent of recipients within five years of the transplant and in 76 percent of recipients within 10 years. This disease course varies among each and every transplant recipient, and there are some patients who will never develop BOS post-transplant. Diagnosis of BOS is tricky. It can only be detected 30 percent of the time via biopsy taken during a bronchoscopy. Therefore, diagnosis must usually rely upon the absence of any other cause for a declining fev1 and a decrease in your forced expiratory flow (FEF 25-75). Since BOS is characterized by dense fibrous scar tissue in the small airways of the lungs, air may become trapped in the small airways. A chest CT scan may be ordered to determine if air trapping is present. Risk factors for BOS include, but are not limited to:
- gastro-esophageal reflux disease (GERD).
- numerous acute rejection episodes.
- poor compliance with anti-rejection treatment.
- primary lung graft dysfunction (PGD).
- fungal, bacterial, and viral infections.
BOS can also occur without any risk factors present. Treatments that may be tried if BOS is suspected are:
- changing the dose of your anti-rejection medications.
- adding additional medications to your immunosuppressant regimen, such as Cellcept, Everolimus, Serolimus, or Azithromycin.
- RATG (three to five IV doses).
- Campath (single IV dose).
- photopheresis treatments.
- a surgical procedure called a Nissen fundoplication (stomach wrap) if GERD is present.
Unfortunately, there are no proven treatments for BOS. The Lung Transplant Foundation’s mission is to fund research into this life-shortening syndrome. Multi-center clinical trials are needed to adequately study the onset, progression and treatment options for BOS. As a patient, you can do your part by taking the best care of yourself, being compliant with all medications, and reporting any symptoms to your transplant team.
As a caretaker for a loved one undergoing a lung transplant, your role has, for many years, been supporting, advocating and guiding the patient through times of illness, hospitalizations, doctor’s visits and emergency situations. Your strength, compassion and love have brought you to assist in the life-changing experience of a lung transplant. You have accepted the day-in, day-out responsibility to care for and provide your loved one with a healthy environment mentally, emotionally and physically while they prepare, undergo and recover from a lung transplant.
For many patients, relocating closer to the transplant center is required. Doing your homework now will make the transition much easier. Become familiar with the transplant center and its surrounding community, look at apartments and other places to stay, and find a location where you will feel safe and comfortable. Many communities offer amenities such as fitness centers, pools and walking trails, which offer healthy, inexpensive activities to enjoy while you are there. The transplant experience is life-changing for the recipient and for you. It can be extremely stressful, even in the best of circumstances. Recommitting now to your own health by developing better diet and exercise habits will help strengthen you and lower your stress level when your care receiver needs you the most.
When you search for housing, look at every option through the lens of health and safety. Try to find places with well lit paths and parking. Check ventilation systems and air returns for excessive dust. Check bathrooms and under sinks for signs of mold or mildew. Inspect the carpets and furniture for cleanliness. Due to the post-transplant immunosuppressant drugs that can leave a patient more susceptible to infections, air quality is very important. Your transplant coordinator will have a list of apartments and hotels nearby. You can also check social media sites such as Facebook and transplant center support groups.
During the financial interview at the transplant center, a counselor will give you an estimate of the typical expenses associated with transplant. Some insurance policies offer financial assistance and reimbursement for travel and relocation expenses. Open the dialogue now with family and friends, asking for assistance to help offset the expenses and to come up with fundraising ideas and a plan. This may seem like a difficult task now, but you will likely have more time now than you will amid the daily pressures of caregiving after the transplant. Setting up a fund, reaching out within your community, your workplace, church family, local organizations, neighborhoods and schools for help will ease the financial burden as the surgery draws near. Fundraisers are great opportunities for communities to come together and for friends and families to show their support. There are many creative ways to raise money: walk-a-thons, sporting events, concerts, and dinners.
Close family and friends may ask if they can personally help. If ever there is a time to say YES, it is now. Establish a network of family and friends to assist you and identify backup caretakers who can provide respite care when you need it. The long term-financial needs of a lung transplant patient are extensive. By rallying support now and helping friends and family to understand this extreme situation, you will help the patient in the long run.
The transplant journey is an extraordinary experience that reaches beyond most people’s normal scope of medical expenses in perhaps a lifetime. Creating a supportive network is key. Don’t be too proud or embarrassed to ask for the help you need financially and emotionally.
As part of the evaluation, the transplant coordinator will discuss your role in the transplant process. Each center will have specific guidelines to follow but they generally require that you are able to provide a safe, healthy environment for the patient and that you are willing and capable of assisting him or her. Most centers offer a variety of classes that are designed to help you understand and care for your loved one. Most programs have support groups and social media sites available for patients and caregivers. You may find becoming involved in such groups helpful and comforting. Developing a good relationship with your transplant coordinators, the nursing staff and transplant team is important. The transplant social worker will help you in a variety of ways, such as finding housing; assisting with social services, financial grants and foundation support; and offering therapeutic support groups and counseling sessions for patients and caretakers.
You will be required to transport and assist your loved one during their evaluation, follow-up appointments and testing before the transplant. During the evaluation, the center will explain its program and policies to you. Regular clinic visits will include pulmonary function tests, x-rays, and blood work, which are usually taken prior to seeing the doctor. It can take hours for the results to come in, so having snacks, a good book, craft or activity will help make the day go by faster. Walk around and explore the facility, and look for any green spaces or step-away places to visit while you are waiting.
As the patient’s health declines and he or she moves closer to transplant, the frequency of appointments and hospitalizations will increase. Your loved one may face a series of life- threatening situations. Understanding what to expect, developing a good relationship with the nurses and coordinators, trusting in your team’s treatment plan, and discussing legal documents that cover end-of-life contingencies are important steps during this time.
CAREGIVER’S ROLE IN NUTRITION
Perhaps one of the greatest strides in the past two decades for patients is the increased focus on diet, physical therapy, strength and endurance exercise programs. Most centers require patients to exercise and to be as active as possible pre- and post-transplant. Many centers have pulmonary rehabilitation facilities and programs with well-trained pulmonary physical therapists and nurses who work diligently to maximize their patients’ strength and endurance through cardio and muscle building exercises. These exercises can bring a feeling of wellbeing and accomplishment to the patient. Although your loved one may be hungry and exhausted when they finish, patients often reap physical, mental and emotional benefits from exercising. They should always seek advice from their team about what physical activities they can handle.
Having a healthy diet and good nutrition are important in maintaining weight requirements, blood sugars and possible side effects from medications. Nutritionists will guide you and offer suggestions for making delicious, healthy fare. Understanding and learning to prepare meals and snacks that are rich in vitamins and proteins will benefit both you and the patient.
Be prepared for changes in mood and behavior. Chronic illness, the progressive worsening in breathing function, the uncertainty of the future, loss of independence, fears of the surgery and outcome, medications, fatigue and stress, pain, and discomfort can cause your loved one to become depressed and angry, even belligerent. Encouraging them to be as active and independent as possible will help them regain a sense of self-reliance and confidence. Ask for help when you need it. If keeping a positive outlook is difficult for you, seek help and support. As one charged with such intense duties, you may feel isolated, which is not uncommon among caretakers. The constant stress of appointments, long days at the clinic, hospitalizations, and your loved one’s underlying life-threatening illness can take a toll. To offset some of the stress, take a reprieve from your caretaking responsibilities, stay physically active, take time to do an activity you enjoy, walk, meditate or pray, eat well and rest. Make time for yourself and your personal needs.
THROUGH THE TRANSPLANT
Once you receive the call notifying you that lungs are available, you will go to the hospital, where you will wait while the team examines the donor’s lungs. Sometimes the lungs, upon closer inspection, are not viable and the transplant will be called off. This is called a “dry run” and it is common.
While your loved one is waiting for the word from the transplant team – often for several hours – you can be with them while they wait. Tap into your strength and resources to stay calm, confident, positive, hopeful, strong, and supportive.
After surgery, the patient will be unconscious and on a ventilator in the medical Intensive Care Unit of the hospital. If you’ve never seen your loved one in this condition before, you may feel overwhelmed at first. Patients are placed in an upright, almost standing position in the hospital bed, and there will be chest tubes, catheters and other equipment connected to your loved one to monitor their vital signs. The transplant recipient will be monitored very closely for the first 48 to 72 hours, and visitation will be limited to certain times of the day and restricted to a certain number of people. Having one or two close family members with you is helpful, but ask other visitors to wait at least a few days before visiting until the patient stabilizes.
Some patients have complications that delay their extubation, but once the patient is off the ventilator, stabilized and stronger, they will be moved into a step-down unit. Most patients will be hospitalized for two to three weeks. In the weeks following surgery, the transplant recipient will be most vulnerable to illness and infection because the immunosuppressant medications will be at their highest doses. A common cold or virus can cause severe problems. Therefore, it is important to limit visitors, wear masks, and allow the patient to rest and recover.
Once discharged, the transplant patient who has relocated will have to stay in the area to recover and rehabilitate and will have frequent follow up doctor’s visits and tests. Your role as a caretaker can become more challenging as you manage the post-transplant protocol. Your loved one may have short-term memory loss or lack of their full cognition at first because of the transplant medications. You will need to assist in administering medication and monitoring blood pressure, blood sugars, and pulmonary function. Post-transplant medications affect each patient differently. Be observant and note any changes in mood, energy level, and breathing function. If you have any concerns, call your transplant coordinator immediately.
The number of post-transplant medications and medical supplies can be overwhelming and can soon take over your home. To free yourself from the chaos, you might try:
• Creating closet space to house everything.
• Labeling photo boxes to put supplies in.
• Putting pill cases away immediately after use.
As your loved one begins to heal, he or she will begin to soar, free of oxygen and illness, and be able to breathe freely. This is a fun time to learn new physical activities and hobbies to build stamina, strength and energy. A new world will be at your loved one’s disposal. Recovery can be a wonderful time filled with the promise of a healthy life, so embrace it fully. Just make sure to always keep safety in mind: Avoid crowded places, wash your hands regularly or use alcohol hand gels, wear masks when appropriate, and know when to rest.
Long-term post-transplant complications are common. Rejection and infection can occur at any time. Side effects of the immunosuppressive medications include nerve damage; renal and kidney problems; allergic reactions; cancer; and diabetes. Be acutely aware of any changes in your loved one’s appearance or demeanor. A slight temperature and even minor flu-like symptoms need to be reported and treated immediately.
As a caretaker, this is the time to embrace, be present, and be loving, kind and patient with yourself and your loved one. Know that you are in a situation in which you cannot control the outcome; but you do have control over how you handle yourself and each situation that arises. Staying centered, caring for your own needs, asking and graciously receiving assistance, adopting healthy diet and lifestyle habits, and making the absolute best of each moment will help you manage the stress of caregiving physically, mentally and emotionally.
When a child needs an organ transplant, parents have many questions, and may not know where to find answers. Dealing with a child’s sudden or chronic illness can be difficult for any family. The U.S. Organ Procurement and Transplantation Network (OPTN) Patient Affairs Committee (PAC), working with members of other OPTN committees and staff at United Network for Organ Sharing (UNOS) have created a comprehensive handbook for parents with a child facing organ transplant. For more information, read What Every Parent Needs to Know: A Guide When your Child Needs a Transplant.
FDA Patient Engagement
Patients are at the heart of what the FDA does and are vital to our work protecting the public health by ensuring the safety and efficacy of drugs, biological products, and medical devices.
www.fda.gov/patients and FDA – Public Affairs Staff and Patient Engagement Fact Sheet_2018 – PDF
Oxygen Basics Booklet
This booklet provides an in-depth overview of the the basics of supplemental oxygen, including equipment, getting started, Medicare information, and traveling.
Oxygen Basics Booklet (English)
Oxygen Basics Booklet (Spanish)
A Guide to Your Health Care After Lung Transplantation
Request a copy of ‘A Guide to Your Health Care After Lung Transplantation’ by the International Transplant Nurses Society LungTransplantFoundation_1/lthandbook.html
A website that serves as a personal health journal, updating friends and family and rallying support during any type of health journey. www.caringbridge.org
National Organization for Rare Disorders (NORD)A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. https://rarediseases.org/
Scientific Registry of Transplant Recipients (SRTR)
Supports the transplant community with statistical analysis to improve patient outcomes. www.srtr.org
United Network of Organ Sharing (UNOS)Coordinates organ placement in the United States, divided into 11 regions. www.unos.org and its patient education/support site: www.transplantliving.org and the booklet Talking aboutTransplantation: What Every Patient Needs to Know unos.org/wp-content/uploads/unos/ Brochure-113-What-every-patient-needs-to-know.pdf
U.S. Department of Health & Human Services
Please remember this information is not medical advice. However, it is practical advice provided by individuals who have undergone transplants and is a reflection of their experiences.