Considering a BMT

Deciding whether or not to have a BMT can be frightening and daunting. We know that BMT can seem a big leap into the unknown.

Our tips:

• Always feel able to ask the doctors questions about any aspect of the BMT.

‘If a question comes into your head, it’s worth asking it.’

‘Keep a note pad and write down questions as they occur to you, however silly they may seem. Having unanswered questions can lead to sleepless nights.’

‘Don’t go home with a doubt in your mind; you will sleep better for it.’

• Ask the doctors to be completely honest with you and to tell you the number of times they have performed the type of transplant under consideration and with what match of donor, the success rates and risks, the drugs that are used and any possible side effects the drugs might have.

‘Doctors can only give you medical advice; they don’t make the final decision. It is down to you to think about all the pros and cons and then to make the decision.’

• Don’t let yourself get confused by technical medical terms. Always ask for a clear explanation in language that is easy to understand, no matter how many times this is required. Repeat the explanation back to the doctor so they can address any misunderstanding.

• If you can’t absorb all the information given to you verbally, ask for it to be written down. That way you can consider it in your own time.

• If your child is of an appropriate age, ask them how they feel about having a BMT.

‘“Sick of being different.” “I want to do normal things.” These are things Alex, aged 10, used to say. Alex wanted a BMT and he knew why.’

‘With teenagers and adolescents it is important that they clearly understand everything, as ultimately the decision to go through a BMT is theirs. It is a difficult age to deal with something so enormous.’

• Talk to other families who have gone through BMT, because they can be a source of support and knowledge. The CGD Society can help put you in touch with other families. Contact us at hello@cgdsociety.org

• Make sure you have a point of contact within the BMT team to keep you up to date with what is happening concerning plans for the BMT and to answer any questions.

• Use the psychology support services available to you and accept all the support that the hospital offers you in helping you reach a decision about whether to proceed with BMT or not.

• Get everyone on board with your decision. Family and friends will want to support you once they know what is going to happen. Really involve any brothers, sisters and grandparents.

‘Making a decision to go for BMT is always extremely hard. However, once you’ve made the decision, try to stay as positive as you can. This can help you through the even harder times.’