Clinical psychologist Melissa Sanchez explains how she helps patients who need heart and lung transplants
My job as a psychologist, working alongside my clinical colleagues in the heart and lung transplant team, is incredibly rewarding. I’m incredibly privileged to have a job that I love!
When people come to see me, it’s not just us sitting in a room talking about feelings – although of course, helping patients manage depression and anxiety is part of what I do.
My remit is a lot more varied than that, and it’s often the subtle lifestyle changes and practical issues which are the bread and butter of what I do.
Patients and their families and friends are often very stressed: think of the uncertainty of being on the transplant list, or the urgent transplant list, not knowing how long for, and perhaps the boredom of being in hospital for several weeks or even months. For family and friends, there’s the practical aspects like finding time to visit loved ones in hospital, negotiating that time off work, childcare, covering the costs of doing so and trying to juggle everything else we all do in our lives.
I say to people undergoing transplant, ‘What are you hoping for?’ For some, it’s really simple things like, ‘I want to be able to go to the toilet without becoming breathless’, ‘I want to be able to breathe, to walk my child to school’, ‘I’d like to be able to go up the stairs in my house’.
What they want are simple things that most of us take for granted on a daily basis.
Once patients have had a good outcome – surgically, medically, physically – from a heart or lung transplant or a device, such as a LVAD (a pump for patients who have reached end-stage heart failure which is placed alongside the failing heart) or a total artificial heart, my job is to help them adjust to what has happened, and how they incorporate their experience into their sense of self as a whole.
This includes their thoughts and feelings, how they see themselves as individuals but also practicalities like a change in their ability to work again, or take part in activities that might have been off-limits before their transplant.
Adjusting to a new life after transplant
People who have been in heart or lung failure for a long time and now feel better have lots of very natural questions: can they go back to work, can they get married, can they have children – for many patients their illness has been the primary focus of their life for some time, and they’ve had to put other aspects completely on hold.
Young people who have had a chronic illness such as cystic fibrosis may have missed a lot of school during their childhood and adolescence.
They want to know about expectations of them now. Are they well enough to come off disability benefits? Should they get a job? The answers to both these questions obviously hugely depend on the individual.
The transplant team encourages patients to begin working in due course, if they are well enough. Being employed can contribute to an improved sense of self and emotional wellbeing. Many patients who have been on disability benefits need guidance on the impact of having a transplant on their benefits assessment. We are lucky to have a wonderful welfare rights advisor to support these patients.
In my experience, many patients want to be gainfully employed and contributing – this may not always be paid employment. Patients might go into volunteering – fundraising for our charity for example – and pay it forward in some way, while young patients may choose to return to education. Patients often want to know they are a valued member of society who can make a difference in whatever way, big or small.
For all of us, an important part of our self-esteem is bound up with what we achieve in our lives. Illness can have a real impact on that. My job is helping people work out what will fulfil them, what do they need to feel good about themselves? How do they balance that with the rigours of having a transplant? Who can help them achieve those goals?
Sometimes you’re a bit like a care co-ordinator, working out what can be done to support this particular family. Linking in with the occupational therapists and benefits advisors, finding online courses for patients to do while they are recovering and unable to attend college; helping them find something that’s right for them. I am part of a wide multi-disciplinary team and we take a holistic approach to lifestyle changes including exercise, diet, cognitive function and emotional wellbeing.
Change in roles
Adjusting to life after a transplant isn’t always easy!
The boundaries of relationships are pushed to the absolute limit when you’re dealing with someone with a life-threatening illness and rehabilitation after an operation can be challenging for everyone involved.
Often a partner or a parent has been the sole carer. Now, all of a sudden, the dynamic alters. Marriages and relationships may come under strain as patients enjoy the adolescence they never had. The relationship between a parent and a young person may need to be realigned.
When that patient recovers, they potentially have a new lease of life – study, work, different relationships with friends. But it cuts both ways: so too does the person who has been caring for them up to this point. They may want to do new things too. Everything has to be reassessed and re-evaluated as people adjust to their new roles.
New ways of living
For those who’ve had a chronic illness, they may find it hard to believe they are well. They may be wary of letting go of their medical oxygen supply, or breathing masks. These were the things that were allowing them to live for so long, it can be extremely difficult to let go of them. Patients often say to me: ‘I don’t know how these lungs work!’ Over time, they adjust to their new organ and develop new expertise in recognising their signs and symptoms to be mindful of.
Having the transplant has literally breathed new life into the patient. It is a time of hope for the person and their family. For the first time, they can dare to dream of a future together again. However, it’s important to remember that a transplant isn’t a cure and has its own limited life expectancy. Each person has to decide what is important to them, which will vary depending on where they are in their own life span.
So, if you had a transplant as a young person and therefore a new future to write, do you set about studying for that degree and getting on the career ladder – or do you go bungee jumping in Australia and live a different kind of life?
These are really tricky things to consider after you’ve had a transplant – working out what is right for you and your situation.
Sex, drugs and rock ‘n’ roll
The challenges facing young people today are considerable – navigating adolescence and early adulthood requires skill in well people, and there are plenty of opportunities for poor choices along the way. For the transplant cohort, this is particularly challenging.
Young patients are no different to any other teenager or 20-something in what they wish to do – unfortunately, it’s just that the consequences are potentially life-threatening.
One of my jobs is supporting patients in navigating this: you’re going to university, there’s going to be a freshers’ week – how are you going to look after you and your transplant? What support do you need in place?
We can’t stop people experimenting with drugs and drinking. We do, of course, advise people to avoid illicit drugs or excess alcohol. We don’t know what the impact and interactions are on the immunosuppressant drugs. So, we try to build trusting relationships between the patient and the team so that if the young person makes a poor choice, they talk to us and we work together to put appropriate measures in place.
We want people to come to us and say, ‘I’m going off to a situation where there may be drink and drugs – how am I going to handle this? What am I going to say to my friends?’
If someone is in a sexual relationship, and they want to try for a baby, we encourage them to talk to us early on. We try to avoid unplanned pregnancies so we want patients to talk to us if they have had unprotected sex. We all work together to ensure patients feel comfortable approaching us with these sensitive issues.
Sometimes men on heart failure medication or who have had an LVAD will come to see me because their quality of life is affected by erectile dysfunction – a common side effect of some of the medication. They’ll talk to me about it, so then I act as a go-between for the patient and the medical team, who can help address the issue.
Another thing I do is give young people who have had a transplant advice on feeling positive about their bodies. Sometimes people don’t want to get naked with their partners because of scars – we talk about putting these worries into perspective, but I’ll also chat about lighting and lingerie! That’s the real world!
If I had to offer five pieces of advice to someone undergoing a transplant, these would be my top tips:
- be kind to yourself – no-one said it would be easy
- be realistic – don’t set yourself up to fail
- ride the waves – know that good days and bad days are part of your journey. Some days you feel you can climb the mountain, other days, you can just pull up the duvet- both are OK!
- work out what you love doing and set about doing it!
- be the best version of you by focusing on compassion to yourself and others!