Life after transplant

After you have been discharged from hospital following a transplant, you will need to return to the transplant centre very frequently for close monitoring of your health, including checking for signs of infection or rejection. The frequency of the visits to the transplant team will reduce as you recover and your health improves, and some tests may be done at your local hospital. Your transplant team will continue to monitor your health throughout your life with routine, but less regular, appointments similar to your CF clinic visits.

Some people with CF find the rehabilitation process challenging. They are having to learn about a whole new condition and treatment regimen, and going from being an ‘expert CF patient’ to a ‘novice transplant patient’ can be frustrating, particularly if the recovery isn’t straightforward.

I remember feeling worried about every little thing that happened in my body. I’d have an itch, for example, and be worried that it might be ‘a thing’. I stayed in touch with my transplant coordinator and would phone with these worries. That support was invaluable.

There are some complications that can happen after transplant which may mean you need extra support and care with your health.

You can read more about recovery and health after transplant in our CF and transplant booklet.

Download the booklet

When the intensive care and recovery is over, the well-wishing has stopped and normal life, albeit a ‘new normal’, begins – what next?

Transplant is life-altering and this can be stressful, even when quality of life has actually improved. Some people may find that transplant doesn’t meet all their expectations and may feel a sense of disappointment with the outcome. The change in your quality and experience of life can take some getting used to; it’s a ‘new normal’. Others are surprised by how quickly the reality of normal life kicks in.

I felt vulnerable, it was all new to me and I didn’t know what to do next – I asked myself, what is this new life all about? I felt a bit lost.

It is not unusual for people to experience psychological challenges, including depression and post-traumatic stress disorder (PTSD), following transplant. Sometimes this can stem from trauma relating to experiences of end-stage CF or from the transplant recovery; medications can also lower mood; survivor guilt, or a pressure to be happy and inspiring, can also contribute to emotional difficulties.

Transplant can also impact on your body image; the operation results in scarring, whilst the steroids cause increased appetite, as well as possible facial swelling. Some immuno-suppressants are known to increase hair growth all over the body, and this can be particularly difficult for women to cope with.

I’ve put on weight since the transplant, it’s partly because the steroids increase your appetite, but also because they cause swelling. A lot of my old clothes don’t fit me anymore and I feel that I look like a completely different person.

Complicated emotions after transplant can be a lot to deal with – if you need support, do talk to your transplant team, CF team or your GP. You can also talk to others who are post-transplant in our community forum.

Join the conversation about life post-transplant

It’s different for everyone, but some people who’ve been through transplant have said that this major life event impacted on everyone close to them and changed the dynamic of some relationships. Caring roles can change following successful transplant, and while this is a positive development, it can take some time for relationships to readjust, where one partner was previously perceived as the carer and the other ‘cared for’.

For family and partners, it can be very stressful, and it’s important, in these circumstances, that they can seek support when they need it, whether it’s from their own personal support network or, for partners and close family, from the transplant team.

In addition to possible emotional stress, there are practical considerations associated with the transplant process. Life continues – jobs, children, or other responsibilities, and it can be challenging to keep this all going as normally as possible.

My husband was working full-time, caring for our young son, caring for me and coping with the stresses of the transplant process. So, in many ways, it was equally hard on him.

There is more information and support in our transplant booklet for friends and family.

We also have an information booklet for parents whose children are on the transplant journey.

Many people who are post-transplant have worries and questions about money. If you are on disability benefits, you may want to know whether you need to tell the Department for Work and Pensions that you’ve had a transplant, and you may have questions about how or when to do this.

It can be difficult to know what to do and there’s no simple answer – recovery from and life after transplant is complex and individual, and it’s important that you can get benefits advice that is personalised to you. You might be able to get help from a social worker on your transplant team or CF team, or you can contact our helpline who can put you in touch with our specialist Welfare and Rights Advisor who can advise and support you.

We can also provide an income maximisation service where we can look at any other financial support that might be available to you – this can really help if your circumstances have changed.

You might also be able to get help through our welfare grants programme.

We have a range of grants, including:

• Emergency grants for times of crisis, if you’re struggling to afford the basic essentials you need to stay well with CF
• If you’re currently going through transplant assessment or you had your transplant very recently, our transplant grants may be able to help you or your family with some of the costs that often build up with travel and extended hospital stays.
• Activity Boost grants can support people post-transplant to build their exercise tolerance or their confidence in getting active.
• Rest & Relax Holiday grants fund short breaks for people who have recently been through a difficult time with their health, including people who have had a transplant.

“It was hard but I’d say around 10 months after transplant was when it all starting coming together and I really felt it had all been worth it. I went travelling after my transplant and then returned to London to work full time. I make sensible compromises around my transplant care and have moved on from those early days of feeling vulnerable.”

Everyone with CF who has a transplant will have different feelings about work and employment. Some people may feel well enough to work post-transplant – and for some this might mean returning to a job they did before the transplant, for others it might mean starting a new career or entering the workplace for the first time.  Others may not be well enough to work despite their transplant or may take a long time to recover enough to consider employment.

Cystic fibrosis can be defined as a disability, and given the ongoing treatment needs, regular hospital check ups and extra care needed in day to day life, this continues post-transplant. People with disabilities are protected from discrimination at work under the Equality Act, or the Disability Discrimination Act in Northern Ireland. This means there are decisions for you to make about whether you disclose your condition to an employer.  This is a personal choice but can affect the support your employer has to provide to you so it’s important to get advice and support if you are unsure about this.

We can support you with all of this through our Work Forwards employment programme. We can offer one to one, personalised support, as well as information and group online sessions, supporting you with any aspect of work and employment.

Find out more

We’ve also supported people like Poppy who are post-transplant to explore self-employment through the Helen Barrett Bright Idea Awards.

Physically, my transplant has given me much more freedom that I’m so very grateful to my donor for. However, the psychological impact of adjusting from being very unwell to suddenly well was very difficult for me. I applied for the Helen Barrett Bright Idea Awards a few months after my transplant, and when I got the call to say I’d won I was truly elated. I decided it was a sign to start my career as an artist with my newly gifted health.

- Poppy

As you’ll know, you still have CF when you’ve had a transplant. This means we’re still here for you, and you can access any of our support and information.

Our Helpline can offer a listening ear as well as practical information and support. We’re open Monday–Friday, 10am–4pm via phone, email, social channels, and WhatsApp. As well as emotional support, our Helpline team can put you in touch with our welfare advisor, help you apply for a grant or direct you to our employment support programme, Work Forwards.

You can join our online community to talk to others about any aspect of CF.

 We also have a dedicated space for the post-transplant community to connect.

If there’s more support you need, please tell us about it. The Information, Support and Programmes Advisory Groups are two groups of people from the CF community who provide feedback, thoughts and ideas to help us make sure that the information and support we develop and provide meets the needs of everyone with CF across the UK.