Wellbeing

Transplantation is a remarkable opportunity and while this section talks about the challenges and how to prepare for them, it’s important to remember that evidence indicates that quality of life improves with transplantation, the symptoms of organ failure subside, and lives are enhanced.

The message here is that it is not a simple course; it takes adaptation and effort, collaboration with the medical and surgical teams, and realistic expectations. Managing illness and living life are important, and are not mutually exclusive even if finding the balance takes some effort.

Along with physical fitness, mental wellbeing plays a vital role in living a full life post-transplantation.

The concept of ‘wellbeing’ seems simple, but trying to define it in a useful way is difficult. It is not ‘happiness,’ although some happiness will hopefully be experienced along the way. Carol Ryff, psychologist and the Hilldale Professor of Psychology at the University of Wisconsin-Madison, suggested that a sense of autonomy, achieving some areas of environmental mastery, a perception of personal growth, good relationships, sense of purpose and self-acceptance can all contribute to a sense of ‘wellbeing’.

Changes and adaptation – what you can expect to go through

Transplantation is often preceded by a long period of necessary, but sometimes unwanted and resisted, adaptations to the challenges of illness.

There are many steps in the process. These stages can include, but are not limited to:

  • Illness diagnosis and its impact, which can effect on your view of the future
  • Living with gradual deterioration of organ function and associated limitations, or the shock of sudden life-threatening illness
  • Assessment for suitability for transplantation with its associated worries
  • The sometimes long and increasingly anxious waiting and hoping for a donor
  • The apprehension and excitement of being called in and having the operation

But it’s not over then; there are the ups and downs of post-operative care and complications; months of early physical recovery and rehabilitation, and then the longer process of constructing or reconstructing a post-transplant life, often with the knowledge that the transplant may not last forever.

People outside the immediate experience of transplant, even people who are close to you, might think that the transplant gives people back a ‘normal life’. The evidence is that quality of life does improve, but life after transplant is not life without illness; you have swapped your original illness for the ‘illness’ of transplant.

That new illness is usually a far better illness to have, but it is still beset with medications, visits to doctors, investigations, treatment and the ever-present anxiety about something going wrong.

The surge of worry about almost every physical sensation settles eventually, but can be re-awakened by any subsequent complication and, to a lesser extent, every time there’s another test. The outside world might not recognise the emotional toll this takes.

It’s remarkable how well so many people cope with these multiple challenges. Your life and your illness are not the same, and balancing the sometimes competing demands is not an easy gig. At times it will seem like having two full-time jobs, yet most people do manage to find a balance between these competing demands and achieve a better quality of life and wellbeing. However it’s not surprising that along the way many people experience patches of frustration, uncertainty, anxiety, despondency or demoralisation.

Heart recipient Bec Craven.

Bec Craven, heart recipient and model: “I am 2 years out of having a heart transplant and what a milestone it is. I have been given the best gift money can’t buy and a second chance at life… BUT NO ONE can prepare you for the psychological side of things after receiving that gift. It isn’t just like the viral videos on the internet where you wake up and feel so amazing, like are they kidding? I don’t even remember waking up but I was told I bit someone’s finger and I yelled at everyone and didn’t know if I was alive. So no – you feel like shit and the recovery stage is a lot harder and longer than what you think. PS: being on high doses of steroids will make you feel like a rockstar.

“The past 4 years I have had to be so strong for myself to get me through the most difficult time of my young life and now that I am somewhat normal (questionable😂), the part of where I think “You have died twice; had a mechanical heart to stay alive; you have someone else’s heart and all of this because of a virus you caught” feels like a movie that would win an Oscar in Hollywood. I want to be a role model that doesn’t just portray the amazing side of my life since my new heart. I want to be real and not have Instagram as a mask.

“So here I am! This is me… I cry a lot more than people think. I get so tired some days that it’s an effort to do anything. I also get so angry sometimes I feel like I could be an MMA fighter. I overthink everything. I love inspiring and helping people but when it comes to inspiring myself it’s not there all the time. But hey, life is a crazy as f*ck rollercoaster and I am blessed beyond blessed that I am here to share it. Treasure everything and everyone. God is good. It’s all in the name of love ♥️ So blessed to do this shoot w/ @krysta_atkinson and make up by @bridgetjmanning 🦋♥🌹💕🌈♥

Unrealistic expectations

One of the traps of the transplantation process is unrealistic and over-optimistic expectations. Transplant is a great gift from the donor. There can be the desire to grasp this ‘second chance at life;’ to be grateful and to ‘give something back’ which is understandable and laudable, but can be a burden.

The best goal, and the greatest thanks to those who have donated, supported and helped, is to work towards a life that that is, for you, a life worth living. That is hard enough, and to want to change the world or sail around the globe (or worse: to feel that that you ought to), means that recipients might criticise themselves when in fact they deserve enormous credit.

After the flush of excitement and optimism that might follow a successful transplant or initial discharge from hospital, the hard work of managing medicines, extra hygiene, and other changes (that come with living with a transplant) can be an anticlimax. Faced with the real challenges, many recipients do not always feel entirely grateful and at times are not always sure it was such a great idea. These feelings are normal and can be worked through.

How a transplant can set you back

Your post-transplant experiences are influenced by what has come before, and are unique to each recipient.

YOUNG RECIPIENTS: A younger person who has been unwell might have had to miss substantial amounts of school and associated social experiences. Their coping efforts would have been directed towards dealing with illness and its more immediate demands. Life skills do not magically emerge after transplant and, while the young recipient might have dealt with difficult life experiences that others have not, they subsequently still have to learn those more basic skills that their peers already have.

Young people and their families face a challenge in needing to find the balance between independence and living life despite illness, and dependence with protection by family and avoidance of risks.

This can also be the time when questions arise, which may or may not be spoken, about whether it is their body, their self and their life or whether it “belongs” to the illness, the doctors or their parents.

Trying to find a useful balance that also allows the young person to gradually and naturally take responsibility can be fraught with worries, frustrations and a few mistakes along the way.

ADULT RECIPIENTS: In early adulthood we hope to shape and reshape our aspirations, consolidate independence and identity, find jobs and careers, and establish long-term relationships. Illness may interfere to a greater or lesser extent with all of these and require adjustments. Transplant can certainly help but unfortunately it still leaves the person where they were up to before transplant, not where they would have been without illness; meaning some recipients can feel as though they are playing catch-up.

MATURE ADULTS: In later adulthood our lives tend to be more established. This gives patients undergoing transplant more to fall back on. However, illness might have required significant changes in relationships, with roles changing from those of partner and lover to carer and cared-for. Post-transplant, intimacy with a partner can be reestablished over time.

Work prospects in mid and later life might not have been helped by illness and future employers are not always as reassured about the work capacity of someone post-transplant as they should be. Some recipients have jobs to go back to. However for some, return to the workforce may not prove practical or possible. Whether by choice or necessity, some people might face retirement, which is again a challenging transition as it means establishing new roles and activities.

(Left) Bec Craven shortly after surgery; (right) 2 years post-transplant.

Heart recipient Bec Craven: “Taking time out today to reflect on the last 2 years of having a heart transplant. The photo on the left is a picture I uploaded on my instagram 5 weeks after receiving a new heart and the one on right was only a few weeks ago.

“Where have those 2 years gone! Having a transplant has not just been a blessing but an eye-opening experience. I feel like I’m on a never-ending rollercoaster sometimes. 😆

“The pressures of our society can be pretty crazy and hard to deal with. Scars were always something that you felt like you had to hide but GUESS WHAT it’s 2018 and scars are not only labelled beautiful, special and unique, but are powerful and storytelling. Show the world what you’re made of!

“There will always be those annoying people that comment nasty things but you will shine above that. You can wave to them from top 👋🏼🖕🏼love yourself ♥♥♥♥ You ARE worth every penny and MORE ♥♥♥♥♥”

Mental health

Many patients and their families manage the changes associated with transplant well; they use their support networks, coping techniques and the support from their transplant teams. However, it’s a big transition, and some people might find it harder than others.

It can be difficult to predict who will find it particularly difficult. You may be at risk of struggling with mental health post-transplant if you:

  • Have previously had problems with depression or anxiety
  • If you feel you don’t have enough social support, or
  • If you have unexpected medical problems after your transplant

Before your transplant, it is worth thinking about how you’d know if depression or anxiety was recurring and who you would ask for help. It might help to think about your supports and whether you’re going to need extra help with things like household chores or shopping.

You might find that you experience a variety of different and sometimes intense emotions after your transplant. These might include (but are not limited to) frustration, elation, worry, sadness, irritability, despair and guilt. Your emotional state will generally follow your medical condition. If your transplant is doing well and your progress is smooth, you might feel fine in yourself. If there are concerns about rejection or you have an infection, for example, you might feel worried or sad.

It’s not uncommon for individuals to remember unpleasant or frightening incidents from their hospital admissions. These may well be quite real memories, as serious illness might require intrusive investigations and urgent treatments. However the medication like steroids, other immunosuppressants, painkillers as well the surgery can also lead to periods of confusion, sometimes with hallucinations, misinterpretations and frightening but unreal beliefs.

There is evidence that keeping a diary, or having a carer keep one particularly during ICU stays helps to put such beliefs and confusion back into perspective and relieve these memories and fears. Sometimes medication might be required for a short period. Occasionally people may however suffer symptoms of acute stress reactions, or even post-traumatic stress disorder (such as nightmares or repeated memories) which might need specific treatment.

Most patients at some point will experience negative emotions but generally, intense and distressing emotions do not last long. The exception to this is worry. Many patients talk about low-grade worry about their transplant in the back of their minds. It does not interfere with life but becomes more obvious at particular times; for example at follow-up appointments and blood tests.

Double lung recipient Lauren Rowe on seeking help while facing challenges.

Sometimes emotions such as depression or anxiety can take on a life of their own and become an illness. These illnesses might be similar to episodes you’ve had previously, if there is a history of depression or anxiety, or they might be occurring for the first time.

Depression and anxiety

Patients with depression might experience: sadness, irritability, loss of interest in usually pleasurable activities, changes in appetite, changes in sleep, feeling slowed down, poor memory and concentration, feeling worthless or guilty; thoughts about death, wanting to be dead, or suicide.

Patients with anxiety might experience: worry or fear; physical symptoms including palpitations, breathlessness, sweating and tingling; and avoidance of situations that cause fear or worry.

If you think you might be depressed or anxious, it is important to ask for help. It’s hard enough just dealing with medical issues without also struggling emotionally. In addition, depression can make it harder to adhere to your medications, exercise routine, diet and get to appointments. Anxiety can lead to avoiding tests, treatments and appointments.

Treatment of depression and anxiety after a transplant is much the same as in other settings. It will generally involve either medication (antidepressants) or talking therapies, or a combination of both. It’s important to think about the choice of medication, especially if you have a liver or kidney transplant that is not functioning perfectly.

There are many non-medical ways of reducing anxiety levels including slow breathing (sometimes called controlled breathing), progressive muscle relaxation, meditation and mindfulness.

So who would you ask for help? There are various options. You can ask the transplant team for advice on whom to talk to. You can ask your specialist physician for help. You can also approach your GP. Some transplant services will have access to a transplant psychiatrist or a general hospital psychiatrist.

Your medications, emotions and cognition: Some emotions can be contributed to your anti-rejection medications.

Steroids in particular (for example, prednisone or prednisolone) and also the calcineurin inhibitors (such as tacrolimus) can affect your emotions and also your cognition (thinking). Side effects can include insomnia, feeling wound up or on-edge, mood swings, tearfulness, confusion, vivid dreams and, less commonly, unusual experiences (such as seeing things that are not there).

When your doctors start to reduce your steroid dose, these side effects should settle down.

You should let you doctors know if you’re experiencing any of these side effects. It is often possible to help with them in some way: for example, medication for a short period to help you sleep at night.

The use of alcohol and illicit substances like ecstasy, speed, cocaine, marijuana and heroin are associated with the risk of negative consequences for all of us, but might also pose greater risks related to your specific transplant. There might be direct effects on your transplant organ. Intoxication can lead to forgetting your anti-rejection medication or taking it at the wrong time. This is an area which you really need to discuss with your transplant team or doctor.

The amount of alcohol you can consume depends on the type of transplant you’ve received. Check with your doctor to make sure you understand how many drinks are safe to consume.

Remember: drinking too much can raise your blood pressure and cause weight gain. For more on alcohol limits and safe living, click here.

Some useful resources

Beyondblue – 1300 22 4636

Beyondblue provides information and phone support around depression and anxiety.

Head to Health

Head to Health pulls together mental health information from different places into the one website, and provides information and phone support.

Managing interpersonal relationships

The relationships that existed before your transplant have probably already had to adapt to your illness; whether they’re with your partner/spouse, parents, children, siblings or friends.

Perhaps your partner has had to take on more of a caring role with you or more household responsibilities. Maybe your parents are more involved in your life and you’ve lost some independence.

If your transplant was donated by a loved one, they will be recovering from surgery at the same time as you. You might have extra emotions to deal with including gratitude and concern for their wellbeing.

These relationships will need to readjust again after your transplant and this might take time. Initially, you might need help as you recover from surgery. Later you might want more independence as you regain strength/confidence.

Knowing how much care and how much independence you need is a balancing act for both you and your loved ones. Nobody is going to get it right all the time, and it will be a learning process for you as well as them.

Sometimes people need help with relationships. If this is the case, who would you ask for help? You could ask your GP for a referral to a psychologist for relationship counselling, or you could refer yourself to Relationships Australia – 1300 364 277.

Intimacy, sex and having children

Physical intimacy is something that patients are often concerned about but might find difficult or embarrassing to talk about.

Your desire and ability to be sexually intimate might be affected by a number of factors. Physical illness can have an impact on both your desire and your sexual function. In addition, the roles in your relationship might have changed so that your partner is now your carer – this might also have an impact on physical intimacy.

After a transplant, your interest in physical intimacy will be affected by how you feel physically and how you feel about yourself. Allow yourself time, if needed, to recover from surgery, adjust to changes in your body, and for your relationship to readjust after the transplant. Remember: intimacy does not have to involve sexual intercourse. You can begin being intimate any time you like, if you’re feeling well enough. It’s best to wait until your incision has healed before sexual intercourse.

If you have concerns about your sexual desire or sexual function, please ask your doctor about it. Your doctor can help determine whether there’s a physical problem which can be addressed. For more, refer to the section on lifestyle and sex post-transplant.

The decision to have a child is always a big one. This is something that needs to be discussed with your doctor and planned for carefully. Consideration needs to be given to the risks to your transplant and to your developing baby, and changes in medication will likely be required before you become pregnant.

There will be other issues that might make this a more difficult decision for you. You might need to think about your underlying illness and whether it can be passed on to your baby through your genes. Confronting though it can be, you might be thinking about your future, the risks of further ill health and your mortality.

Double lung recipient Kate Rootsey six years post-transplant with daughter Molly.

Talking about your transplant

It can be difficult to know what to say to people about having a transplant. The bottom line is: it’s up to you who you tell and when you tell them. It can be a balancing act, balancing your right to privacy with a feeling of obligation to tell others or even to advocate for donation and transplantation.

If you’re negotiating a new relationship, it’s common to be torn between feeling that you ought to tell the other person and worry it might turn them away. It can be difficult to find the right time.

The same dilemma can arise if you are applying for a new job. You may like to maintain your privacy and are under no legal obligation to disclose your circumstances to a new employer if your health issues do not impact your performance. At some point you will probably need to talk about your transplant but this does not have to be right away. Informing an employer in advance may help when you need flexibility; for example, to attend medical appointments. For more on resuming work, click here.

Acknowledgements

Transplant Australia gratefully acknowledges the following experts as the authors of this material:

Dr Robert Gribble

Consultation-Liaison Psychiatrist
Royal Prince Alfred Hospital

Dr Kirsty Morris

Consultation-Liaison Psychiatrist
Royal Prince Alfred Hospital