We’ve spoken to lots of our patients about living with GvHD, and how it’s affected their lives. Everyone’s experience is unique – different people may have different symptoms, or have problems for varying periods of time.
However, we’ve seen a number of thoughts and pieces of advice crop up again and again; we’ve collated these into five key ways to manage your GvHD.
All of the quotes below are from patients, who’ve very kindly shared their stories anonymously to help other people going through the same thing.
1: Ask questions.
If you’re not sure about something, don’t be afraid to ask. If you’re experiencing a new symptom, or a new area of your body is being affected, check with your transplant team. It could be GvHD presenting itself in a different part of your body, and the sooner you begin to treat it the better.
‘It wasn't until a routine BMT appointment that I was aware the problems in my mouth were GvHD, or that unusual hair growth (hairless patches on my legs) was GvHD of the hair follicles, or that soreness between the legs was GvHD in the intimate area.’
2: Give yourself time.
Try to be patient with the treatment – even if symptoms reappear. As frustrating as it can be, time plays a major factor in the healing of GvHD and many patients see significant improvements over time with the right medication.
‘We were given creams and pain relief, but time was what was needed.’
3: Get support.
The emotional impact of GvHD can sometimes feel overwhelming. Many of our patients have mentioned that psychotherapy and counselling was useful in helping them cope. Speak to your transplant team to find out which services are available to you – talking to a professional could make all the difference.
‘Psychotherapy has helped enormously to change me and help me to come to terms with things. I’ve learnt to focus on the stuff that I can do, rather than what I can't.’
4: Talk to your transplant team.
Keep updating your team with any changes to your symptoms so they can adjust your medication and find what works for you.
‘On discharge I took 35 pills a day, which my wife dispensed with great care. It's amazing to look back at this list with its many crossing outs and dates, which were there to record when the various drugs were stopped or altered and to see how we were making progress at the same time.’
5: Try to adapt to changes where you can.
Living with GvHD can be incredibly difficult at times, and changes to your appearance and wellbeing are sometimes life-altering. But some patients find their perspective shifts when they’re able to accept some of the changes brought on by GvHD.
‘My team are doing a great job supporting me. And despite all my problems, limitations and frustrations, I still push on every day. My fitness is getting a little better. I'm more mobile. As much as it is frustrating, it can also be just as rewarding. I'm still incredibly grateful. Accept, adapt, evolve – every day.’
To see all our patient resources, visit our website at www.anthonynolan.org/patients-and-families