Introduction

An online rehabilitation program for transplant recipients
Refit for Life! 
Encouraging recipients to lead a life of fitness and well-being

The World Transplant Games Federation (WTGF) is embarking on an ambitious worldwide program to help members of the global transplant community embrace their new lives. The ‘Refit for Life’ is an initiative of the WTGF’s Fit for Life! Global program aimed at helping transplant recipients take the first steps to get active and start enjoying a new and increased quality of life!

Research has shown that before sport, before running and even before walking, we need to help recipients improve their muscle tone, their cardiac output and their flexibility. We need to give them confidence to look beyond what has been described as a ‘fear of movement’ and teach them to start slowly and build up to a life of activity and wellness.”

The Refit for Life program is a modular web-based program designed to take recipients through a six- month program which will improve not only their fitness and nutrition but their mental wellbeing and overall quality of life. “Many recipients, having spent years chronically ill, literally don’t know how to take those first few steps. Refit for Life guides them gently and gives them confidence,” Mr. Thomas said.

 

Refit For Life Tool Kit

The Program in detail:
The Refit for Life program is a 6-month exercise plan to help recipients get active.

  • It is made up of 4 x 6-week modules and runs very similar to an online study course.
  • Each module contains assessments, a 6-week exercise program and a short video.
  • You have to complete the tasks in each module before you can move onto the next one.
  • The software does not allow you to move on without completing all tasks.
  • The software also implements time frames (i.e. you cannot complete the next assessment until 6 weeks have passed since downloading the exercise program)

The Program modules:

  • Exercise Program 1 (6 weeks) – Let’s get moving(A short and simple walking program to get you moving again. Includes some basic mobility exercises to loosen things up for the upcoming modules.)
  • Exercise Program 2 (6 weeks) – Off the marks!(An interval walking program building your cardiovascular fitness. Includes an introduction to some basic strengthening and toning exercises as well as some stretching exercises.)
  • Exercise Program 3 (6 weeks) – Building Blocks(Longer duration walking intervals as we start to increase your cardiovascular fitness. An introduction to full body strengthening and stretches of the major muscle groups.)
  • Exercise Program 4 (6 weeks) – Final Straights(Walking program with increased intervals of up to 35 minutes duration. Includes a complex full body strength and toning program, with relevant stretches.)

If you have already taken the first steps of moving again after your transplant, you may want to start this program from Module 2. Email [email protected] with your motivation and we will move you ahead to Module 2.

 

Have you got the all clear?

Before you register for this rehabilitation program, you must get the all clear from your Health Care Team. You will be asked to sign a declaration in the registration process confirming that you received medical clearance to commence this program.

Being Assessed?

When starting the program you will be asked to complete a Self Assessment Questionnaire. It is helpful (but not mandatory) to work alongside a Sports Therapist (Physiotherapist, Biokineticist, Personal Trainer etc.) who will be able to carry out more specific tests and assessments throughout the program. Download the self-assessment questionnaire form here, so you can see in advance what measurements and tests are being requested.

Download Self Assessment Form
Register for the Refit Program

Importance of Exercise

As a transplant recipient, you are faced with the usual human challenges of everyday life, but you have additional considerations given the unique impact that your immune suppression drugs have on you.

Immunosuppressant medications are a vital part of your new post-transplant life, however, these come with side effects and some are more severe than others.  This may put you at a higher risk of developing obesity, diabetes, osteoporosis, hypertension, cardiovascular disease as well as a decrease in normal muscle function.

Quality of life has become a major issue for recipients following their transplant surgery not only physically but also mentally.  A large percentage of recipients battle with various physiological ailments such as guilt, depression and anxiety. Studies have shown that an increase in physical activity not only increases physical but actively assists in the improvement of the recipient’s mental health.

Regular physical activity and healthy eating is universally recommended for all adults and children of the general public and yet these recommendations are not as commonly advised or explained to the transplant community even though the benefits of making these lifestyle choices are critically important.

 

Benefits of an increase in physical activity for a transplant recipient both physically and mentally include:

  • Increased whole body strength
  • Improved energy levels
  • Helps control body weight
  • Decrease in proportion of body fat
  • Increase in heart and lung performance
  • Reduces overall risk of cardiovascular disease
  • Lower blood pressure
  • Reduces risk of developing diabetes and assists in glucose management in those with diabetes
  • Improved circulation
  • Decrease in cholesterol levels
  • Increase in bone density / strength and balance
  • Increased muscle mass, muscle strength & muscle endurance, and joint flexibility
  • Improved aerobic capacity
  • Faster recovery post-surgery
  • Enhances your mental sharpness
  • Reduced stress, tension, anxiety and depression
  • Improved sleep
  • Helps motivate you to improve your lifestyle
  • Helps in rebuilding your social life and relationships
  • Improves emotional wellbeing and self-perception
  • Improves your sex life

Getting started is often the hardest

Your journey, whether it be due to a long wait to receive your organ or recovering from transplant surgery, will most likely begin with you being quite physically delicate.  You haven’t exercised in some time and now you don’t know where to start.  Studies have shown that it is important to start exercising within the first year of your transplant. Wherever you are at in your journey, it is never too late to start getting active.

Below are our recommended “getting started” guidelines:

The first thing to do is get the all clear from your Health Care Professional. They will undertake a basic test to evaluate your current fitness level and conditio

  1. GOALS

It is important to set goals for yourself when starting a program. So, start thinking about your individual goals and plan a routine that will help you facilitate achieving those goals.  Be sure your goals are realistic and achievable

To increase endurance and strength, starting with a low-level walking/calisthenics program and progressing to moderate level exercise might be best.

  1. TIME AND RESOURCE AVAILABILITY

Exercise and getting fit does not have to be expensive and does not require joining an exercise facility.  The time and place that is most convenient to you for exercise will result in successful participation.  Independent exercise at home is ideal for some but may require significant internal motivation and support from others to stay committed.  Many people prefer to join a gym where they have a financial obligation as well as the benefit of social interaction and support at the gym.  However, others who are just starting out or who have never exercised may be intimidated by a gym setting.  Carefully consider what is best for YOU and what setting will encourage you to participate regularly.

  1. SUPPORT & ENCOURAGEMENT

We all need support when adopting an exercise program.  You should develop a schedule for how you will incorporate your exercise into your regular routine.  The following can be used for motivation and encouragement and may help you to stick with your program.

  • Enlist family or friends (or a dog) to exercise with.
  • Ask a friend or family member to check in on your exercise regularly (i.e. weekly) so you are accountable to someone.
  • Buy an activity monitor or fitness tracker (i.e. Fitbit®, pedometer) to help monitor your exercise and keep track of your progress.
  • Sign up with a personal trainer who can get you started, then maybe touch base with that person regularly to assess your program, get feedback, encouragement and recommendations on how to progress.

After a while, you may not need as much encouragement, because you will have created a routine and if you have to skip an exercise session, your body will miss it and let you know!

  1. GENERAL TIPS to keep in mind as you get going

Be realistic in your goals

  • Listen to your body: We all have good and bad days. If your exercise session on a given day does not feel comfortable, decrease the duration and/or intensity or take the day off and try again the next day. Adjust your sessions according to your feeling and needs.
  • Start SLOWLY!
  • Progress GRADUALLY: This will assure adequate adaptation to increasing levels of exercise. Problems with exercise typically result when people do too much too soon, or progress their exercise too quickly, not allowing their muscles, heart and circulatory systems to adequately adapt to the exercise.
  • You should NOT feel pain. You may feel discomfort or soreness in muscles that have not been used recently, but that should not prevent you from exercising the next day.
  • Exercise should enhance your energy, not cause fatigue. If you are exhausted after your exercise session, you may need to reduce the intensity or duration the next day.
  • Set aside time each day specifically for your exercise.
  • If your exercise is interrupted for any reason, get back to it as soon as possible, and start slowly and progress back to your previous levels gradual

Risks Associated with Exercise

The most common risk is injury to the musculoskeletal system, ranging from minor muscle strain to tissue or bone or joint trauma.  The most serious risk of exercise is inducement of a cardiac event.

Cardiac Risk:

People with known or suspected heart disease are most at risk to suffer a cardiac event during exercise.  Individuals with multiple cardiovascular risk factors (smoking, hypertension, diabetes, high cholesterol) may also be at higher risk for exercise-induced cardiac events.  People who are lead less active lifestyles are also at a much higher risk of suffering from a cardiac event while exercising.  However, regular exercise actually reduces risk of an exercise-induced cardiac event.  It is always prudent to consult your healthcare professional before starting a program of moderate to vigorous intensity exercise, or before increasing the exertion level of exercise.

Incorporating more physical activity into your daily life should not require permission of your healthcare professional.  Low-level walking and light calisthenics, likewise, presents minimal risk and should be encouraged by your healthcare professional.  However, prior to increasing to a program of higher exertion (i.e. moving to a moderate level program or moving to or starting a vigorous program) it is recommended that you consult your healthcare professional.

Cardiac risk can be minimized by:

  • Managing cardiac risk factors by taking blood pressure medications, following prudent diet recommendations, adopting a healthy lifestyle. (no smoking, stress management etc.)
  • Addressing any other medical issues promptly.
  • Starting exercise slowly and progressing gradually.
  • Monitoring your responses to increased levels of activity.
  • Being aware of and responding to symptoms that may indicate inappropriate cardiac responses to exercise. (see section below)

Orthopaedic/Muscular-Skeletal Risks:

Injury to muscle, bones or joints is the most common problem associated with exercise.  Although there have been no studies in transplant recipients, it is possible that previous disease (i.e. kidney disease) and some immunosuppression medications may affect bones such that there could be an increased risk of orthopaedic/musculoskeletal injury with exercise.  If you experience joint (hip/knee) discomfort associated with exercise, it is recommended that you consult a professional physical therapist to evaluate the discomfort and appropriate treatment.  The type of exercises recommended may need to be modified (i.e. non-weight bearing exercise such as cycling or swimming instead of weight bearing activity such as walking/jogging).

Musculoskeletal injury risk during exercise can be minimized by:

  • Avoiding high impact activities. (jumping, jogging, etc.)(at least until adequate muscle strength is attained)
  • Starting exercise slowly and progressing gradually.
  • Starting exercise sessions of short duration for poorly conditioned individuals.
  • Developing adequate strength and flexibility.
  • Assuring adequate warm-up and cool-down times into your exercise sessions.
  • Assuring use of appropriate footwear.
  • Monitoring responses to increasing levels of activity.

Precautions due to immunosuppressives:

  • Wear sunscreen, your skin will be more sensitive to the elements.
  • Clean all gym equipment with disinfectant wipes.
  • Speak to a health care team regarding the use of public swimming pools.

Signs and Symptom to be aware of

It’s vital to listen to your body and be aware of the signs and symptoms it gives you.

When NOT to exercise:

  • If you have a fever.
  • If you have a new illness or medical concern that has not been treated.
  • If you have any pain.
  • If temperatures in the exercise environment are very hot.

When to SLOW DOWN:

Shorten or reduce the exertion level during your next exercise session.

  • If you are breathing too hard and find yourself unable to talk with someone else. (i.e. you should exercise at an intensity where your breathing frequency increases, but you are still able to hold a conversation if someone was next to you)
  • When your muscles or joints get so sore that you cannot exercise the next day.
  • When you do not fully recover from your exercise session within an hour or so.
  • When you have an unusually high heart rate response to the exercise.
  • If the exertion effort of your exercise session feels harder than usual.

When to STOP exercising:

If you notice any of these during your exercise session, stop, cool down and discuss with your health care provider before returning to your exercise program.

  • Excessive Shortness of breath.
  • Chest pain or pressure. (that may radiate into your neck/jaw area or down your arm)
  • Irregular or racing heart beats.
  • Dizziness or light-headedness.
  • Blurring of your vision.
  • Excessive fatigue following your exercise (beyond just feeling a bit tired from your workout) also if sleep is affected.

Warming up and Stretching

Every exercise session should include:

a warm-up, a conditioning phase, and a cool down.

Benefits of a Warm-up

The warm-up helps your body slowly adjust from rest to exercise. The warm-up reduces the stress on your heart and muscles while slowly increasing your breathing, circulation (heart rate), and body temperature.  It also helps improve flexibility, reduces muscle soreness and prevents injury.

The best warm-up includes stretching, range of motion activities, and the beginning of the activity at a low-intensity level.  Stretching the arms and legs before and after exercising helps to prepare muscles for activity and helps to prevent injury and muscle strain.  Regular stretching can also increase your range of motion and flexibility.

Warm-up Techniques

Specific exercise for each muscle group are used for stretching.  The recommendation for these exercises is to move as directed (see tab X) to a point of feeling a stretch, and hold the stretch for 10 – 30 seconds.  This should be repeated 2-4 times for each exercise.  It is important not to spring into each muscle stretch, but to move slowly into each stretch and hold it.  Each repetition, the muscle will be able to stretch a bit further.  It is important to breath during the stretch. You may also, efficiently, stretch your muscles with, if they are warmed up, a light walk or cycling exercise.

The Cool Down Phase

The cool-down phase is the last phase of your exercise session.  It allows your body to gradually recover from the conditioning phase.  Your heart rate and blood pressure will return to near-resting values.  Cool-down does not mean to sit down.  In fact, do not sit, standstill, or lie down right after exercise.  This may cause you to feel dizzy, lightheaded, or have heart palpitations (a fluttering in your chest).

The best cool-down is to slowly decrease the intensity of your activity.  You may also do some of the same stretching activities you did during the warm-up phase.

Breathing Recovery

A great aid to help your body recover, post-training, is breathing recovery techniques.  The faster your body can go from an excited state to a calm one, the more capable you will be of recovering from your workouts.  Recovery breathing is basically taking a deep breath into your belly through your nose, and exhaling slowly through your mouth.  Try taking longer to exhale then to inhale.  An example of a good, deep breath might be a four-second inhale held for seven seconds and followed by an eight-second exhale.  Repeat this process three to four times, letting your body calm itself and adjust to the new breathing pattern.

Different Types of Exercise

Cardiovascular (Cardio)

Cardiovascular exercise is movement that involves large muscle groups in a rhythmic manner, such as walking, jogging, cycling, cross-country skiing, swimming. These exercises increase your heart rate. There are ‘cardio’ machines such as treadmills, elliptical trainers (that simulate cross country skiing movement – alternating simultaneous arm and leg movement), stepping machines and others, which all facilitate cardiovascular exercise.

Cardiovascular exercise requires the integrated functioning of many body systems, including increased breathing (ventilation), increased heart output (increased heart rate and increased flow per beat), increased blood flow through the circulation to the working muscles, and increased energy production by the working skeletal muscles. All this facilitates movement of oxygen from the atmosphere to the working muscles which use it for contractions and producing work.

Exercise at lower intensity (exertion), uses primarily oxygen for energy production, however as the exertion increases above about 75% of maximal, some of the work is done without use of oxygen and a metabolic end product called lactic acid is produced and accumulates in the muscle, eventually causing muscle fatigue. Exercise below this threshold will be more easily sustained, and is less fatiguing. A good indicator that you are around this threshold is when breathing starts to become difficult.

Responses to cardiovascular exercise:

Cardiovascular exercise strengthens the heart muscle. It improves circulation to the muscles and increases the ability of the muscles to extract and use oxygen for energy production, so they can do more work. Normal responses to a single bout of cardiovascular exercise include: increase in breathing rate and depth, increase in heart (pulse) rate, increase in systolic blood pressure and no change or lowering of diastolic blood pressure, increase in blood flow to the working muscles and away from nonworking tissue (i.e. digestive track). If the exercise intensity (speed, resistance, or both) increases, these body responses gradually grow until maximal levels of exercise are achieved, at which point, the exercise cannot be continued. Pushing the effort to maximal levels is not recommended for general conditioning, since these levels are not sustainable for the recommended duration of time. This will result in fatigue and possibly muscle soreness that may prevent exercise the next day. Those wishing to train competitively may include high intensity interval training as part of their conditioning program for their sport, however,  with higher intensity exercise there is a greater risk of musculo-skeletal injury.

Through increased stimulation of the heart, circulation and muscles, with regular exercise, the body adapts and progress is made. Thus, following a period of 3 months of regular exercise training, changes observed would be lower heart rates at rest, and during exercise at a given level  (i.e. walking 3.0 miles  per hour on a treadmill), breathing would be lower, heart rate will be lower, blood pressure will be lower, and the work will feel easier (perceived exertion). Thus, before starting a program of cardiovascular exercise, an inactive person may have difficulty climbing stairs and experience significant shortness of breath, increased heart rate, and leg fatigue and have to stop and take a rest. After consistent exercise, climbing this same flight of stairs will become easier, with less breathing required, a lower heart rate, and less muscle fatigue (due to increased muscle strength, increased blood flow to the muscles and more efficient use of oxygen by the muscles), thus physically, things will become easier to do.

Strengthening: Weights and Toning

To strengthen specific muscles, it is important to work both individual muscles and their surrounding muscle groups.  By exposing the muscles to progressive resistance either with your own body weight, moving against gravity for resistance, or using weights (hand weights or machines), elastic bands.  There are different types of programs and ways to gain muscle strength, depending on your starting point and your goals.  For most people who have lost significant muscle strength and are starting at a low level of activity, it is sensible to use lighter weights, lifting them more times (higher repetitions).  If you are interested in more competitive sport participation, using higher weights with fewer repetitions would be appropriate, as long as those individuals have a good baseline level of strength to start with.  Organ transplant recipients can definitely increase their muscle strength, although it is possible that some immunosuppression medications may slow strength development when compared to others.

The principle of start slowly and progress gradually is critical in developing strength.  There are structural changes that must occur within the muscles when starting and progressing with increased resistance in order to achieve strength gains.  Too much resistance or too great of an increase in resistance without allowing adaptation can damage muscles and delay any strength gains.  Starting slowly and progressing gradually will also minimize muscle soreness.

Double-lung recipient Kate Phillips

Flexibility

Muscles that are unused and weak also become stiff and stunted.  In order for optimal performance, muscles must be lengthened and have the ability to stretch and move freely.  Specific stretching exercises for individual muscles and muscle groups are an important part of an exercise program and developing fitness.  The principle of start slowly and progress gradually applies to the stretching exercises outlined below also.

Exercise Recommendations

Cardiovascular Exercise

Recommendations for cardiovascular exercise should always include the:


Types of Exercise
Specific exercise movements.


Frequency of Exercise
Number of times per day or per week.


Duration of Exercise
How long to exercise per sessions, or how many repetitions of specific exercise per session.


Intensity of Exercise
The effort, or how hard to ‘push’ yourself during the exercise.

Types of Exercise

An appropriate exercise recommendation is one that includes the types of exercise that will meet your needs and promote regular participation, progresses gradually in frequency (to a goal of 5 or more days per week) and duration to a goal of 30 – 60 minutes per session) and is at an appropriate intensity or (or effort) that facilitates safety, adaptation and regular participation.

Frequency of Exercise

Recommendations for overall health is to do some type of physical activity on most, if not all days per week.  A structured exercise program for developing fitness it is recommended that you do some cardiovascular exercise 3 – 5 times per week.  Strength or resistance training is recommended for 2 – 3 times per week (rest days between strength exercise sessions are important for adaptations in the muscle to occur).  Flexibility exercises are recommended 3 times per week.

If you are just getting started and have been inactive for a while, it might be good to try doing short bouts (5 – 10min bouts) of your cardiovascular exercise twice a day until you have worked up in duration to 20 – 30 minutes.  Then you can cut back to once a day and begin to increase your exercise intensity.

Duration of Exercise

The goal for cardiovascular exercise is 30 – 60 minutes per session.  You may need to work up to this level. You can start with as little as 5 minutes per session and increase in time 2 – 3 minutes per session each week.  This will allow your body to adapt to the increase in exercise and get you into the habit of exercise in a way that is comfortable, and achievable. If you feel good, you can progress at a faster pace (i.e. 5 or 10 minutes more per session every week) until you reach your goal of at least 30 minutes.  A goal of 30 minutes is recommended for improving fitness, for weight management longer durations are recommended.

Intensity of Exercise

Exercise intensity (or level of effort or exertion) is often the most difficult to gauge, however, it is an important consideration when developing fitness.

Heart rate:

It is possible to monitor your pulse (heart) rate during exercise, however, there are several medications that affect your pulse rate during exercise, making this method of monitoring intensity unreliable. If you work with an exercise specialist or personal trainer, this individual can provide guidance on heart rate monitoring.

The “talk test”:

In getting started, and perhaps throughout any exercise program for developing fitness, the most important thing to monitor is how you are feeling.  A really good way to gauge your effort is by your breathing.  Breathing is important during cardiovascular exercise and you should warm up at a low level of cardio for 3 – 5 minutes at a level that increases your breathing somewhat – you could possibly still sing a tune during your warm up.  Your effort should then increase (by walking or cycling faster or increasing the resistance on the cycle or cardio machine) to a level of breathing that is such that you are breathing harder, but could still carry on a conversation with someone next to you.  For general fitness training, there is never a need for exercising so hard that you are gasping for breath, or feeling fully winded during your exercise.  If exercise is done at that level, a) it is uncomfortable and unenjoyable, b) will be difficult to sustain for the recommended duration (30 – 60 minutes), and c) may increase the risk of injury.

Perceived exertion:

This is a monitoring method that is referred to as “Work Effort”’ – it is how you rate the level of exertion or effort.  To give you an idea of how to rate your effort, below is a scale from 0 to 5 with descriptors for each level of effort.

WORK EFFORT SCALE

0 = no effort (rest)
1 = minimal effort
2 = easy effort (warm up)
3 = moderate effort (conditioning level)
4 = hard effort (advanced conditioning level)
5 = very hard effort (not recommended)

  • Sitting at rest the effort level would be rated as “0”.
  • Getting up and moving around would be “minimal effort” or a rating of “1”.
  • Moving a bit faster (but breathing level such that you could still sing a tune) would be described as an “easy effort” or a rating of “2”.
  • Exercising a bit harder (walking faster, or putting on some resistance to your movement) (breathing level that is increased but you could still talk to someone next to you) would be described as “moderate effort” or a rating of “3”.
  • Further increasing the speed and/or resistance will further increase breathing to a point that it is difficult to carry on a conversation and would be described as “hard effort” or a rating of “4”.
  • Exercise that is described as “very hard effort” or rated a “5” is near maximal level, and not necessary or recommended for fitness development.

Using the Work Effort Scale: Here’s how you can use this type of rating system to guide how hard you should exercise.  Your cardiovascular exercise session should start out with a warm-up period for 3 – 5 minutes at an effort level of ‘easy effort” or “2”. You will then increase the speed and/or resistance to your conditioning level, which is a level that you would describe as “moderate” effort or “3”.  You will work up to sustaining this level of effort for 30 – 60 minutes.  At the end of the conditioning period, the effort is lowered to ‘2’ or ‘1’ for a cool-down that lasts for 3 – 5 minutes.

Overview of a Cardiovascular Exercise Session: Duration and Intensity

* you could eventually, after you can comfortably do 30-45 min at an intensity of  “2” continuously, move to “hard”  or “4” using intervals

Strengthening Exercise

Specific exercises are used to strengthen each muscle or muscle group.
The strengthening program is made up of:


Resistance

The amount of resistance.


Repetitions

The number of repetitions of each exercise.


Sets

The number of ‘sets’ (number of times
the sequence of exercises is repeated).

  • Your starting level should be a weight that can be lifted comfortably 10 times, once (or one set).  The starting level may vary between muscle groups.
  • The progression is to first increase the number of repetitions of each exercise, by 2 – 3 repetitions/session.
  • Once 10 – 12 repetitions is achieved, then do another set of the exercises (go through the exercises again.
  • The goal is 10 – 12 repetitions of each exercise – 3 times (or sets).  Once this is achieved, the amount of weight is increased, conservatively, by 0.5 – 1 kg.
  • When using your own body weight against gravity for resistance, the increase in resistance may be to reduce support from hands (i.e. if doing chair stands), or gradually start doing heel lifts (toe raises) using one leg at a time.

Strengthening Exercise

Specific exercises are used to strengthen each muscle or muscle group.
The strengthening program is made up of:


Resistance
The amount of resistance.


Repetitions
The number of repetitions of each exercise.


Sets
The number of ‘sets’ (number of times
the sequence of exercises is repeated).

  • Your starting level should be a weight that can be lifted comfortably 10 times, once (or one set).  The starting level may vary between muscle groups.
  • The progression is to first increase the number of repetitions of each exercise, by 2 – 3 repetitions/session.
  • Once 10 – 12 repetitions is achieved, then do another set of the exercises (go through the exercises again.
  • The goal is 10 – 12 repetitions of each exercise – 3 times (or sets).  Once this is achieved, the amount of weight is increased, conservatively, by 0.5 – 1 kg.
  • When using your own body weight against gravity for resistance, the increase in resistance may be to reduce support from hands (i.e. if doing chair stands), or gradually start doing heel lifts (toe raises) using one leg at a time.

Starting Your Exercise Program

It is important that you see your medical professional before commencing any workout programs.

Everyone joining this rehabilitation program will start on the beginner level.

The below information, however is useful to determine where you are aiming and how you can expect to progress through your program.

Beginner

Aim: to get moving again

If you have experienced lethargic and inactive bouts prior to your transplant, your first goal will be to get moving again.  It is important that you have the strength to support your body weight in the cardiovascular exercise you choose to do.  Cardiovascular exercises will be critical for improving your health and overall physical functioning.

Since there can be a significant loss of muscle mass and strength due to prolonged physical inactivity experienced prior to (and for some following) transplant, strengthening exercises will be an essential part of regaining your fitness.

There are always several things to consider as you get started with a program of regular exercise, depending on your goals which may range simple day-to-day activities to participating in recreational sports or even athletic competition.

The differences in programs span widely, from incorporating more movement and walking and participation in activities like walking, climbing stairs even gardening to vigorous athletic training.  The differences are typically determined by the level of intensity, the duration and the frequency of participation and your commitment to the program. The most important thing to remember is that you, as a transplant recipient,  commit towards doing some sort of regular physical activity on most, if not all days of the week for the sake of your overall health and well-being.  There will be benefits gained from any level of physical activity as long as participation is regular and appropriate for your physical condition.

As a beginner trying to get active again, some simple options may be:

  • Taking stairs at work.
  • Walking to the store.
  • Parking further from a destination.
  • Walking activities around the home such as gardening, etc.
  • Doing easy strengthening exercises such as chair stands and stair climbs.
  • Use of light callisthenics or light weights to start strengthening.

The most important step at this stage will be to get moving and to set aside some time on most, if not all days of the week.

Moderate

Aim: Set aside time 3 – 5 days/week to participate in exercise at a ‘moderate’ exertion level

(i.e. a level that increases breathing, pulse rate, and uses large muscle groups in a rhythmic manner).

Examples of this type of exercise includes:

  • Brisk walking
  • Cycling
  • Swimming
  • The use of cardio-equipment
  • Strengthening equipment (weights and toning)

This level of training is generally suited to someone who can walk continuously for 30 minutes and has the desire to increase their endurance and strength passed their normal daily activities.

Vigorous

Aim: Exercise for sports participating and/or athletic competition

These programs are aimed at individuals who wish to increase their exercise program beyond the moderate level by incorporating interval training at a higher intensity, and who wish to start to incorporate sport specific training.

This is suitable for those who are already able to participate in moderate levels of activity for at least 30 minutes 3 – 5 days per week.

Mental Wellbeing

You should receive information as part of your post-transplant discharge on mental well-being. Our aim here is to simply guide you to a mental focused state to engage in exercise and continue with it.

Although the trauma of undergoing a life-changing organ transplant is endured mainly by the recipient, we must not forget that the emotional stresses do not just impact the recipient but also the people around them.  Much time is spent focusing on the medical element, coping with the illness, considering and understanding the actual medical procedure and looking at the recovery and healing process but it is also important to establish good social connections and maintain healthy relationships after your transplant.

It is normal to feel elated and a sense of hope post your transplant procedure. After some time, these feelings and hope can be replaced with natural feelings of fear and worry. It is common to have concerns about organ rejection, or be concerned over the future.  Ensuring that you also address the mental wellbeing of your recovery post-surgery is equally important.

Organ transplants are a very successful therapy, and most people who get them live normal lives. But there still may be bumps during your road to recovery. For some people, those bumps can be hard to handle.

It can be very helpful to establish regular visits with a mental health care professional who can assist you to work through some of the emotions that you may be feeling so that any shame or guilt that you may be feeling can be dealt with before it effects your physical well-being.

Guilt after an Organ Transplant

Guilt is a common reaction people have after a transplant. Patients often report thinking a lot about the donor and feeling guilty about benefiting from the donor’s death.  In the same way you may feel guilt for accepting / asking for an organ from a family member or friend.  This feeling can be especially strong for people who became very ill while waiting and hoping for an organ to become available.  After the procedure, some get the feeling that they had been wishing for someone else to die.

One way people come to terms with these feelings is by focusing on the fact that for both the donor family and the recipient the transplant is one way to get a sense of meaning from a death.  That understanding, the experts say, can be a source of comfort.

For many people, getting in touch with the donor family can help.  To respect privacy, organ donation organisations do not allow you make direct contact without the donor family’s agreement, but, you can at least write a letter that your health care team can pass on to them.

Burden of Responsibility

Caring for your transplanted organ requires effort.  This can be related to the medication regiments which have to be followed, or simply the frequent medical tests or follow up appointments.  Sometimes your body may take a while to respond to the medications, and this can often lead to frustration and anxiety.  Transplant recipients often also feel a sense of responsibility for their new organ, and fear that they could do something wrong that might harm the organ or the recovery process.  These are all common feelings, and dealing with your frustration and anxiety is essential in order to try prevent a state of depression.

Family Issues

Sometimes a transplant can happen quite suddenly, and it is not always something that can be planned for. This uncertainty can result in your home life, at any moment being turned upside down. It is also very difficult to predict how you might feel after the transplant.

It is important to involve your family and friends early on in the process. For one thing, you need to keep your expectations from getting too high. It will take time to get back to normal. Not being prepared for that reality can cause disappointment and contribute towards depression or negative feelings for prolonged periods. Being honest with your loved ones and expressing your feelings and emotions are an essential part of your recovery.

Medications can also have an effect on your moods and behaviours. Sleep can become a problem area. It is incredibly important to remember that recovery is a process and that you take sleep, and getting enough rest, very seriously. While resting use the time to reflect and nurture existing relationships as you will rely on these support systems continuously.

Getting Help After Organ Transplantation

As you adjust to your new organ, some of these feelings may bother you less. Part of living with a transplant is accepting uncertainty.

Experts say it’s important to stay optimistic while at the same time accepting that it’s impossible to know exactly what’s going to happen and what the future may hold for you.

But while living with some uncertainty is necessary, you should never accept depression or constant anxiety as inevitable. If you feel that you’re becoming depressed or chronically anxious, talk to your health care team  and seek help. There is no shame in admitting that you cannot go it alone.

Many people find that support groups can make a big difference. In everyday life, you don’t run into many people who have had a transplant. By joining a support group, you get to talk to people who are going through the same things that you are. Just meeting people in your position can make a big difference. Knowing that others are going through the same experience and that others have experienced failures and successes can give you a very healthy perspective.

Acknowledgements to the Refit for Life Program

  • Patricia Painter, PhD Education & Exercise Physiology, Research Associate Professor, USA
  • Professor Patria Hume, PhD, Professor Human Performance, New Zealand
  • Matthew Wallen. PdD, Exercise & Sports Science, Australia
  • Tania Janaudis-Ferreira, PhD, Physiotherapist / Assistant Professor, Canada
  • Sunita Mathur, PhD, Physiotherapist, Associate professor, Canada
  • Brad Ward, Doctor of Pharmacy, Pharm. D, Astellas USA
  • Heilie Uys, M Cur, D Cur (intensive Nursing Science) Nephrology Nursing, South Africa
  • Jean Ernest – Bsc Dietetics, Post Grad Diploma Dietetics, NHD Food Technology, Dietician, South Africa
  • Nicole Ribeiro – Bsc & Masters, Dietician, South Africa
  • Justin Bircher, BA Human Movement Science, BSc Honors – Biokinetics Biokineticist, South Africa
  • Prime Human Performance Institute, www.primehp.co.za, South Africa
  • World Transplant Games Federation
  • Astellas

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