NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out!

Archive, News / By /

The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI.

You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available but if your preferred language is missing let us know via the contact form and we can add it.

DISCLAIMER: The AIPI booklet on lung transplant was revised by the pulmonary hypertension medical team at the S.Orsola-Malpighi hospital in Bologna, Italy, and published in 2018. While every possible effort has been taken to ensure that the content is accurate and up-to-date we invite visitors to consult with their health care professionals before making any decisions based upon it.

INDEX

  • INTRODUCTION
  • 1.”BEFORE”
  • 1.1The “window of opportunity”
  • 1.2 Screening procedures
  • 1.3 Contraindications
  • 1.4 Psychological Evaluation
  • 1.5 Screening tests
  • 1.6 Being listed
  • 1.7 The waiting period
  • 1.8 Allocation of organs
  • 1.9 Organizational Aspects
  • 1.16 Transfer to the transplant center
  • 2. “DURING”
  • 2.1 Admission to hospital
  • 2.2 The surgery
  • 2.3 Waking up after surgery
  • 2.4 Immediate post-op
  • 2.5 Potential complications
  • 2.6. Hospital stay post ICU
  • 2.7 Precautions
  • 2.8 Back to a normal ward
  • 3. AFTER
  • 3.1 Hygiene
    3.2 Dental care
    3.3 Contact with animals
    3.4 Social Interactions
  • 3.5 Vaccinations
  • 3.6 Intimacy
  • 3.10 Social benefits and entitlements
  • 3.11 Nutrition
  • 3.12 Physical Activity
  • CONCLUSIONS

INTRODUCTION

Lung transplantation represents a critical juncture in the journey of illness, with significant practical, organizational, and psychological implications. This publication aims to provide concrete answers to patients in a straightforward and accessible manner, offering practical advice on navigating the various stages of the transplant process, which we have divided into “before,” “during,” and “after.”

A lung transplant can save lives and dramatically improve the quality of life of patients, outweighing the challenges of taking immunosuppressive medications and undergoing frequent medical check-ups. Most lung transplant recipients are able to resume normal lives and return to work. However, much remains to be done across Europe and indeed the world to address organ shortages and organizational issues to ensure that access to this potentially ife saving surgery is available to all.

1.”BEFORE”

1.1 The “window of opportunity” for a transplant

The term “window of opportunity” for a transplant refers to the critical period during which a patient is in the optimal condition for undergoing a transplant, i.e. when the potential benefits of the transplant are maximized, and the risks are minimized. It’s a time-sensitive opportunity where delaying the procedure could result in the patient becoming too ill to undergo the transplant or the organ no longer being viable. This represents a critical and emotionally challenging period for patients. For doctors, selecting the right time to place a patient on the transplant list is equally complex.

1.2 The screening procedures

Once the decision to pursue a lung transplant is made, patients undergo a comprehensive series of tests to ensure there are no contraindications and to verify their suitability for the procedure. These tests, collectively known as the “pre-transplant screening,” are essential to determine the patient’s readiness and compatibility for a transplant. The screenings are typically painless and are performed relatively quickly, either on a day-hospital basis or, if necessary, during an ordinary hospital stay. Some of these tests can also be arranged at hospital centers more convenient for the patient.

1.3 Contraindications

Certain co-morbidities are particularly significant when considering a transplant due to the high doses of anti-rejection drugs (immunosuppressants) administered post-transplant. These drugs, which suppress the immune system, can have serious adverse effects on patients with underlying health issues. Active smoking and dependence on drugs or alcohol are deemed unacceptable for lung transplantation.

1.4 Psychological Evaluation

In addition to the medical screenings, a psychological evaluation is required to ensure the patient is mentally and emotionally prepared to care for their new organ. This evaluation assesses the patient’s ability to adhere to post-transplant care protocols, which is crucial for the long-term success of the transplant. By thoroughly examining these factors, the healthcare team ensures that the patient is optimally prepared for the transplant, maximizing the likelihood of a successful outcome and a better quality of life post-operation.

1.5 Screening tests

  • Blood and lung tissue tests. Typing of blood and lung tissue helps doctors identify the most compatible donor.
  • Chest X-ray. This aims to outline the size of the lungs and the thoracic cavity.
  • Pulmonary function test.
  • Chest and abdominal CT scan (computerised tomography).
  • Radionuclide angiography.
  • Lung scan (V/Q scan or ventilation-perfusion scan).
  • Electrocardiogram, standard echocardiography, and if necessary, stress echocardiography. These tests aim to determine the health status of the heart as, in some rare cases, patients needing a lung transplant may also require a heart transplant.

1.6 Being listed for a transplant

After successfully passing the screening, the patient’s case is presented to a multidisciplinary team of specialists involved in the transplant process. This team collectively evaluates whether to proceed with the intervention and determines the appropriate type of transplant—whether it be a single lung, double lung, or heart-lung transplant. Following this comprehensive evaluation, the patient receives a consent form to be placed on the waiting list. This form includes all the necessary information, and the medical staff is available to answer any questions and provide clarifications. It is crucial that both the patient and their family have all their questions thoroughly addressed at this stage. Once the informed consent is signed, the patient is officially added to the waiting list.

1.7 The waiting period

Being listed for a transplant marks a significant milestone, but it also signals the beginning of a challenging waiting period. This period is often preceded by years of illness, involving painful or invasive therapies, frequent check-ups, numerous analyses, and considerable uncertainty—all of which can severely strain both the body and the mind. Now, new anxieties may emerge: “How long will I have to wait? What if they don’t call me in time? What will happen next?” This phase is one of the most complex and emotionally taxing, not only for the patient but also for their family and friends.

1.8 Allocation of organs

The allocation of organs in lung transplant is based on two primary factors: the compatibility between the potential donor and the recipient, and the patient’s position on the waiting list. This position is determined according to stringent criteria approved by the relevant scientific authorities. Each patient’s personal, clinical, and immunological data are submitted for evaluation by the national transplant center. The management of waiting lists is conducted with transparency and adheres to strict protocols. By adhering to these protocols, the transplant process aims to ensure fairness and optimize the chances of successful outcomes, providing hope and a pathway to a better quality of life for patients in need.

1.9 Organizational Aspects

Addressing the organizational aspects during this phase is equally important. Here are some steps to ensure a smooth process:

  • Ensure you can always be reached. Leave your contact numbers with the transplant team, keep your cell phone charged, and avoid going to places with poor signal coverage.
  • Household Arrangements: Leave clear instructions for the household in case of your hospitalization and having to be away for some time. A trusted person should have a set of keys to your home.
  • Children, Adolescents, and other dependents: Arrange for someone reliable to oversee their daily routines, including school, sports, and other commitments. This could be a housekeeper, friend, or relative. It’s helpful to create a detailed weekly schedule for each family member who needs care.
  • Work Arrangements: If you are employed, find out in advance what type of certification your employer requires. For self-employed individuals, plan and organize immediate future commitments meticulously and delegate tasks to a trusted colleague.

The waiting period for a transplant is undoubtedly challenging, filled with emotional highs and lows. By staying organized and prepared, you can ease some of the stress and anxiety. Keep a hopeful mindset, knowing that the call brings the opportunity for a new chapter in your life.

1.10 Emotional aspects

Once the organizational aspects are settled, it’s vital to focus on emotional preparation. From the moment you sign the consent to be placed on the list, the call for your transplant can come at any time. The anticipation of the crucial phone call can lead to a flurry of thoughts and emotions. The anxiety and restlessness extend to family members as well, as everyone waits for the phone to ring. Dedicating time daily to one or more of the following practices can be immensely beneficial, chosen according to your personality and natural inclinations:

  • Relaxation Exercises: Engage in techniques designed to promote deep relaxation. These can include progressive muscle relaxation, guided imagery, or deep breathing exercises.
  • Meditation: Meditation practices, such as mindfulness or focused breathing, can help alleviate stress and bring a sense of peace during this waiting period.
  • Yoga: This ancient discipline combines physical postures, breathing exercises, and relaxation techniques. Gentle yoga can enhance both physical well-being and mental tranquility.
  • Psychological Support: If managing emotional stress becomes challenging, seeking the help of a professional, such as a psychologist or psychiatrist, is a wise choice. A psychologist can provide therapeutic techniques to alleviate discomfort and prevent depression. A psychiatrist, being a medical doctor, can prescribe medication to manage anxiety and facilitate sleep if necessary.
  • Connecting with others: Talking to individuals who have undergone similar experiences can be incredibly supportive. Many patient associations offer helplines, message boards, or social media platforms. These resources can be invaluable when friends and family may not fully comprehend what you’re going through. The key is to avoid isolation.

1.11 Tips for emotional well-being:

  • Daily Routine: Establish a routine that includes relaxation, exercise, and time for connecting with others.
  • Self-care: Prioritize activities that you enjoy and that help you feel calm and centered.
  • Stay Informed: Knowledge can reduce anxiety. Stay informed about your medical condition and the transplant process, but avoid overwhelming yourself with too much information.
  • Positive Thinking: Practice positive thinking and visualization techniques, imagining the successful outcome of the transplant and the new life it will bring.

By integrating these practices into your daily life, you can better manage the emotional challenges of waiting for a transplant. Staying proactive about your mental health will not only help you cope during this period but also prepare you for the journey ahead.

1.12 Commiting to a healthy lifestyle

To be in the best possible shape for the transplant, committing to a healthy lifestyle is essential. The guidelines to follow are few but strict:

  • Healthy Eating: Ensure your diet is complete and balanced, avoiding both excess and deprivation. Seek advice from your specialist to tailor your nutritional needs.
  • Opt for five small meals throughout the day to avoid feeling too full and experiencing diaphragm pressure.
  • Fluid intake: adhere strictly to guidelines.
  • Good Sleep: Quality sleep is crucial. Ensure you sleep well to wake up rested and optimistic. A warm bath and chamomile tea (or another herbal tea) before bed can aid relaxation. If you struggle to fall asleep or experience disturbed sleep, consult your doctor for appropriate sleep medication.
  • Fresh air: Walk outdoors at a steady, comfortable pace. A half-hour daily is sufficient to refresh both body and mind. This simple exercise can greatly enhance your physical and mental well-being.

Remember, the waiting time for a transplant is variable and unpredictable. The transplant will occur only when a compatible donor, matching your blood type and body size, is found. Meanwhile, try to maintain your physical and mental condition as best as possible.

1.13 The “Call”

At some point, the long-awaited call will come. Rely on your doctor, your transplant center, and their staff, they are there to support you through every step. There will be ample opportunities later to reflect on these frantic moments, which define the transition from the waiting period to the new chapter of your life.

  • As soon as a compatible lung becomes available, you will receive a phone call from a member of the Transplant Unit.
  • Make sure you clearly understand the transportation arrangements. If necessary, have the details repeated or explained to a family member by the surgeon. Remaining calm during this time is essential, especially for the family.
  • Responding to the Call: It’s important to be aware that you can respond with a “no” to the call, although this should be carefully considered. Various reasons might make you feel unprepared: objective causes or psychological reasons like fear, anxiety, or panic.
  • Refusal: Keep in mind that the organizational timeline is very tight. If you decide to refuse, the same donation might be offered to another person on the waiting list.

1.14 Preparing for the trip to the hospital

Besides the bag with personal items (pajamas, slippers, underwear, toiletries, etc) it is crucial to remember to bring the following essentials:

  • Official papers: Identity card and health insurance card
  • Medical documentation, especially recent tests performed after the last visit to the Transplant Center.
  • Medications: All current medications.
  • Patients using infusion pump medications (e.g., epoprostenol) should bring enough to cover at least 48 hours of treatment.
  • For those on oxygen therapy, ensure you have enough oxygen for the duration of the journey.
  • Valuables: It’s best not to bring valuable items as they are not needed and may cause unnecessary worry.
  • Avoid taking anticoagulant medications, even if they are part of your regular treatment (confirm this with the surgeon).

Given the often stressful and chaotic nature of this process, it’s wise to prepare a checklist. This checklist should include all the essential items and steps to be taken before leaving home. This preparation ensures nothing is forgotten and reduces the stress of the moment.

1.15 Transfer to the transplant center

Once the call comes, the transfer to the transplant center begins. This transfer can occur in various ways depending on the patient’s location and the urgency of the situation. Although rare, there are instances where it may become clear midway through the journey, or even upon arrival, that the donated organs are not perfectly suitable, or another reason arises that prevents proceeding with the operation. While this outcome is infrequent, it’s important to be prepared for such possibilities.

Regarding the logistics, each patient will have received detailed instructions to follow once they receive the call. Here is a summary of the key points:

  • Means of transfer: The transfer can be by ambulance, plane, or other means. If the recipient lives far from the transplant center and the travel time might exceed the time available to organize the transplant, the center will alert the patient’s local authorities to arrange transportation. The mode of transport—whether ambulance or plane—will depend on the distance.
  • Time Sensitivity: Travel time is tight. This is crucial because the organ retrieval operations and the preparation of the recipient for implantation need to be synchronized to minimize the time the donated lungs remain without blood flow. The organs are kept under protection with special cold solutions during this “ischemia time.” At the time of the call, the surgeon will specify the required arrival time at the transplant center.
  • Essential contacts: Remember to save the surgeon’s phone number on your cell phone, which should be kept on and within reach at all times.
  • Family members: A very limited number of family members can, and preferably should, accompany the patient during the transfer. Their presence can provide significant emotional support during this critical time.

The moments following the call are filled with urgency and emotion. While the technical preparations and logistics are essential, it’s equally important to acknowledge and manage the emotional journey. The transfer signifies a pivotal shift from the “before” phase of waiting and uncertainty to the “during” phase of active preparation and anticipation. Embrace this moment with the support of your medical team and loved ones, and stay focused on the hope and possibilities that lie ahead.

2. “DURING”

2.1 Admission to hospital

Upon reaching the transplant center the medical staff will take over all the arrangements. Here are the steps involved:

  • Admission and initial assessments: you will undergo a thorough examination, including a series of blood tests and a chest X-rays
  • Preoperative preparation includes a shower and shaving to ensure a sterile environment.
  • Informed consent: You will be required to sign an informed consent form for the transplant surgery, anesthesia, and the possible need for a blood transfusion or blood products.
  • Waiting in the ward: You will stay in the ward along with any family members until it is time to enter the operating room.

2.2 The surgery

Lung transplant surgery rarely takes less than five to six hours and can sometimes double this duration. Longer times are not necessarily indicative of complications but may relate to the complexity of preoperative stages and variations in the time taken to retrieve the donated organ.

  • Anesthesia: From the moment the patient enters the operating room, they are put to sleep, and all vital functions are closely monitored through the placement of catheters and probes.
  • Transplant procedure: Upon the arrival of the donated organ, the diseased lungs are removed one at a time, and the new lungs are transplanted likewise.
  • During the surgery, it may be necessary to use a heart-lung machine to replace the function of both organs artificially.
  • Incision: Almost always the incision is made in the shape of a “clamshell”: it starts under one armpit and extends to the other, following the natural curves of the breast in women.
  • Communication with family: During the surgery, family members are kept informed. At the end of the transplant, the surgeon will provide detailed information about the procedure and its outcome. The anesthesiologist will inform the patient upon waking.
  • Postoperative care: The recovery process will involve close monitoring and follow-up care. Patients should be prepared for this phase and follow all medical advice diligently.

This journey marks a significant transition from the uncertainties of waiting to the hopeful promise of a new beginning. Stay positive, rely on your support network, and focus on the future with optimism.

2.3 Waking up after surgery

Upon waking up the patient will find themselves in an Intensive Care Unit (ICU). No matter how much one prepares, waking up after a long and complex surgery like a transplant will likely be more challenging than imagined. Here’s what to expect upon finally—more or less laboriously—opening one’s eyes:

  • Initial Confusion: After undergoing hours of anesthesia, it’s common to experience a degree of spatial-temporal disorientation upon waking. Questions such as “Where am I?” and “How much time has passed?” often arise, accompanied by a sense of unfamiliarity towards the individuals present.
  • Effects of anesthesia and medications: these may include vivid “visions” and strange dreams, making it difficult to discern whether one is awake or still dreaming. This state of semi-consciousness can last for a few days.
  • Effects of steroids: these are generally started immediately as part of the anti-rejection therapy and may cause over-excitement, restlessness and insomnia. Be prepared for this, and inform the medical staff if a sleep aid is needed.

2.4 Procedures

Upon waking, expect to be full of “tubes”: these may be annoying but are not painful:

  • Endotracheal tube, used for mechanical assisted ventilation, helping to restore normal cardiocirculatory functions. In some cases you may be “extubated” before waking, but assisted ventilation can continue for a few days/weeks, depending on the case. The weaning process is gradual.
  • Gastric tube for feeding
  • Chest drainage tubes: Usually four, to help clear excess fluids such as bronchial secretions from the new lungs.
  • Urinary catheter and bag: to collect urine.

In cases of mechanical ventilation, especially at night, wrists of patients will be tied to the bed rails with gauze. This prevents accidental removal of tubes and devices while under the lingering effects of anesthesia and medications. Other steps and procedures include:

  • Physiotherapy: a physiotherapist will assist you in recovering motor functions and stimulating bronchial hygiene with respiratory exercises.
  • Bronchial hygiene: regular cleaning of bronchial secretions through a suction cannula is normal after a lung transplant.
  • Post-surgery care and diet: once weaned off the mechanical respirator and having achieved good cardiorespiratory function, you can start a light diet.

2.5 Complications

While complications may arise, it’s important not to be overly alarmed. Doctors are well-equipped to handle them with highly effective medications and procedures for.

  • Rejection may occur and can vary in severity, but it is manageable with prompt medical intervention.
  • Malfunctioning of organs: this may occur with kidneys or other organs, but treatments and procedures are available to address these issues.
  • Anti-rejection drugs and steroids may cause mood swings: you can easily go from euphoria to melancholy, but this is also normal.

Waking up after a transplant is a pivotal moment in the journey. After a few days, the body will readjust, and the prevailing feeling will undoubtedly be the joy of feeling well, having regained one’s breath, and being able to think about a new life.

2.6. Hospital stay post ICU

After being discharged from the Intensive Care Unit, patients are transferred to a semi-Intensive care unit: the hospital stay typically lasts from three to six weeks.

  • The hospitalization will take place in a room reserved for transplant patients, with a low microbial load, to minimize the risk of infections.
  • Main vital functions will continue to be monitored 24 hours a day, maintaining some of the catheters already positioned in the operating room at the time of the intervention.
  • Rehabilitation: During this hospitalization period, rehabilitation efforts will be increased to facilitate the recovery of motor functions, even reaching the first steps out of bed. The assistance of a physiotherapist is essential during this phase.
  • Diet will gradually return to normal.

During the hospitalization in the semi-intensive Care Unit, monitoring will be gradually reduced, particularly removing invasive monitoring conducted through catheters. Chest drains, which are placed in the operating room at the end of the procedure, will also be removed as soon as possible, leaving tiny round scars resembling polio vaccine scars.

2.7 Precautions

During this phase, great caution is needed in contacts with people to reduce the risk of infection as much as possible. I

  • Infections: Being under immunosuppressive therapy makes one much more susceptible to infections.
  • Germs: Family members and visitors must wear disposable shoe covers, a cap, a mask, a gown, and gloves. It is essential that they are in good health conditions.
  • Additionally, it is essential for everyone to wash their hands every time they come into contact with each other or enter and leave the hospital room.
  • Hygiene rules vary from hospital to hospital and from country to country; for example, in some countries it is only necessary to wash hands with antibacterial solution.

2.8 Back to a normal war

When the doctor determines that the clinical conditions allow it, the patients will be transferred to a regular ward. Here, the nursing staff will provide an informational booklet explaining in detail the behaviors to adopt during hospitalization.

Finally, on average three to six weeks after admission, if there has been a smooth recovery, the fateful day arrives when one is allowed to go home! At the time of discharge, you can request a copy of your medical records from the hospital ward where you were admitted.

3. AFTER

Returning home after a transplant is a moment filled with joy, excitement, and relief. Reuniting with loved ones, familiar surroundings, and resuming a normal life while feeling healthier than you have in years is truly a cause for celebration. However, this period also requires vigilance and careful adherence to medical advice to ensure a smooth recovery. Here are some key precautions and tips to help navigate this transition safely and comfortably:

3.1 Hygiene

  • Home environment: Before returning home, ensure the living space is thoroughly cleaned. Pay special attention to sofas, upholstery, and carpets where dust and germs can accumulate.
  • For the first month post-discharge, it’s advisable to use separate beds and bathrooms, maintaining stringent cleanliness in these areas.
  • Personal Hygiene: Wash hands frequently and thoroughly, especially before meals, after taking medication, after using the restroom, and after touching potentially dirty objects (money, public transport handles, newspapers, etc.)
  • Use personal towels to avoid cross-contamination.
  • Disinfect even minor wounds promptly to prevent infections.

3.2 Dental care

  • Maintain oral hygiene through frequent mouth rinses.
  • Delay dental cleaning and extractions until after the third month post-transplant, following a consultation with your transplant team who will prescribe antibiotic prophylaxis.
  • Regular dental check-ups with the transplant center’s referring dentist are recommended if this occurs.

3.3 Contact with animals

  • Pet Precautions: Avoid direct contact with pets during the initial recovery period, even if they are vaccinated and clean. Pay special attention to cat scratches, which can easily become infected.
  • Animals such as birds and hamsters can transmit diseases harmful to humans. Ensure thorough handwashing after any contact with pets, particularly before handling food.

3.4 Social Interactions:

  • For the first few months, minimize exposure to crowded places and large gatherings of relatives or friends to reduce the risk of infection.
  • Wear a mask for protection in crowded settings like bars, restaurants, and cinemas. In less risky environments, such as outdoors or alone at home, the mask can be removed.

3.5 Vaccinations

Avoid vaccinations during the first twelve months post-transplant. Always consult your transplant team before receiving any vaccinations

3.6 Intimacy

Post-transplant, there are no specific risks related to sexual activity other than the general risk of infection. Normal precautions should be taken to maintain overall health and safety.

3.7 Mental Health

This period of adjustment is often accompanied by mixed emotions, including happiness, anxiety, and occasional melancholy.

  • These feelings are normal given the journey through illness and recovery, and they may be influenced by medication side effects.
  • Do not ignore signs of mental distress.
  • Seek support from a professional, such as a psychologist or psychiatrist, if needed.

Returning home marks a significant milestone, symbolizing a new beginning filled with hope and potential. While it is a joyous time, staying vigilant about health and well-being is crucial to ensure continued progress and a successful recovery.

3.8 Post-transplant therapies

After a transplant, adhering to prescribed treatments is crucial for maintaining the health of the new organ and overall well-being. These therapies will become an integral part of daily life and must never be neglected or omitted. Here are key points to consider:

  • Medication management: Upon discharge, you will receive a prescription for medications to be taken at home. Follow-up prescriptions and adjustments will be provided as needed.
  • Immunosuppressive therapy: This therapy prevents organ rejection and must be taken regularly and for life. Non-compliance with the prescribed regimen risks transplant failure.
  • Some medications can interfere with or enhance the effects of immunosuppressive drugs, potentially creating dangerous situations. Always confirm any therapeutic adjustments with your transplant center doctors.
  • Dosage adjustments: The dosage of immunosuppressive drugs may be reduced after the first few months post-transplant, but always under medical supervision.
  • Side Effects: Immunosuppressive drugs can have side effects, which are well-known and manageable. Doctors often use combinations of multiple drugs to mitigate these effects.
  • Common side effects include an increased risk of infections, impacts on kidney function, blood pressure, and the central nervous system. Regular check-ups are essential to monitor and address these issues.
  • Additional Medications: Besides immunosuppressive therapy, other medications will be prescribed to manage and prevent general health issues. Antibiotics, antivirals, and antifungals are often necessary to prevent infections that may be facilitated by immunosuppressive therapy.
  • Support therapies: Support therapies typically include supplements like magnesium, calcium, and vitamins to maintain overall health and mitigate the side effects of immunosuppressive drugs.

Consistently following these therapies and maintaining regular communication with your healthcare team are critical to ensuring a successful recovery and long-term health post-transplant.

3.9 Check-ups

In the first three months after surgery, frequent check-ups are scheduled, becoming less frequent over time. These assessments are essential to monitor clinical progress and document any respiratory functional issues, which may indicate potential dysfunction of the transplanted organ. The dates of visits, laboratory tests, and other investigations are meticulously scheduled to ensure thorough monitoring.

  • Bronchoscopy: this procedure is typically performed under local anesthesia. The nose, throat, and larynx are numbed with a spray, and a short-acting sedative is administered. Bronchoscopy allows inspection of the anastomosis (“seam”) and the entire bronchial system.
  • Lavage of a lower lobe. this is conducted during bronchoscopy using sterile saline solution to check for bacteria, viruses, fungi, pneumocysts, and tuberculosis. Multiple lung tissue samples are collected for microscopic examination to rule out rejection or other issues.
  • Other procedures include the measurement of oxygen and carbon dioxide levels and lung function tests.

Following the initial months, routine check-ups at your transplant center remain mandatory. If you become ill and cannot attend a scheduled check-up, inform the center immediately. This is crucial not only for rescheduling and freeing up space for other patients but also because “feeling unwell” could indicate problems that require immediate attention.

3.10 Social benefits and entitlements

Post-transplant social benefits and entitlements vary significantly from country to country. Here are some common questions and general guidelines:

  • Healthcare costs: Many countries offer healthcare costs’ exemptions for various tests and medications to transplant recipients.
  • Disability laws and benefits: Benefits related to civil disability and other support laws differ globally. It’s important to understand the local regulations and available resources. Patients are encouraged to consult local guidelines and resources for detailed information.
  • Returning to work: Post-transplant, individuals fit for work can usually resume their jobs after an adequate recovery period. However, certain jobs may pose infectious or toxic risks, making them unsuitable for transplant recipients. It is advisable to obtain clinical reports to present to employers or relevant authorities to secure a more suitable job.

Since regulations and practices vary by region, it is essential to seek precise information from local welfare offices. Transplant center social workers can also provide guidance and advice tailored to individual circumstances.

3.11 Nutrition

Weight gain post-transplant can occur for various reasons, such as side effects of medications (e.g., steroids), increased muscle mass from resumed physical activity, or simply the joy of rediscovering food! Therefore, it’s essential to pay close attention to diet, aiming for balanced nutrition. Here are some guidelines:

  • Distribute food intake throughout the day, avoiding excesses or heavy meals, especially in the evening.
  • Eat a colourful variety of fruits and vegetables at least five times a day.
  • Avoid fried foods and limit processed meats. Processed meats and cheeses can be consumed if kept in vacuum-sealed packaging and strictly within the indicated expiration date.
  • Limit wine and alcoholic beverages, as they can interfere with medications. Moderate use of wine during meals is allowed (up to 1-2 glasses per day at most).
  • There are no limits on fluid intake, except in special cases. Generally, it is advisable to consume at least 1,500 ml of fluids per day to counteract the toxic effects on the kidneys from some medications.
  • Kitchen hygiene: Maintaining kitchen hygiene is extremely important.
  • Alongside regular handwashing, pay close attention to food preparation hygiene
  • If consuming raw foods, wash them thoroughly with plenty of running water and a sanitizing solution, especially fruits and salads.
  • Avoid consuming raw meat and fish at any time after the transplant.
  • Do not use leftover food that has been reheated.
  • Tableware: Single-use dishes, utensils, and glasses are not essential if regular dishes are washed thoroughly with hot water or in a dishwasher.

Adopting these nutritional and hygiene practices is essential for maintaining health and well-being after a lung transplant.

3.12 Physical Activity

After the transplant, even while still in the hospital, you will start a targeted exercise program with the help of a physiotherapist. Strengthening exercises, endurance exercises, as well as stretching exercises will be included. Especially in the case of a prolonged hospital stay, mostly spent in bed or in a chair, muscle mass is lost and, even with rehabilitation, it takes some time to regain optimal physical fitness. However, once regained, everything is possible, there are no limits to the type of sports you can practice. Lung transplant patients have reached the summit of Kilimanjaro (almost 6 thousand meters) with a scientific expedition and successfully taken part in the World Transplant Games!

For the less adventurous:

  • Walking is always good: ideally, half an hour a day (avoiding the hottest hours in summer).
  • Cycling, for those who are accustomed to it, is also an excellent exercise.
  • Yoga is beneficial for both the body and the mind.
  • Public swimming pools should be avoided for risk of contamination with germs and funguses.

Regular physical activity not only improves overall health but also enhances the quality of life, aiding in a faster and more effective recovery post-transplant.

CONCLUSIONS

After a lung transplant, returning to a completely normal life is achievable from family, social, and professional perspectives. Work activities can resume gradually after adequate convalescence, typically about six months, following consultation with the medical team. Travel is also possible without contraindications. However, it is essential to carry a sufficient supply of medications for the entire trip. Travel to malaria-endemic areas is not recommended due to the inability to undergo malaria prophylaxis post-transplant. For travel to countries with potential infectious risks, consulting with an infectious disease specialist is advisable to assess any necessary vaccinations and obtain relevant information.

Giulia, a young transplant patient from Italy, offers her practical advice: always carry hand sanitizer, avoid potentially unsafe foods, practice good hygiene, and avoid exposure to cold or rain. She emphasizes the importance of listening to your body, avoiding smoking, eating regularly, taking walks when possible, following doctors’ instructions with confidence, and finding reasons to laugh! These insights remind us to embrace the new life offered by the transplant and enjoy all the beautiful things it can bring.

The original booklet

Related Posts

TRANSLATE »
Scroll to Top