We understand that living with cardiomyopathy can be challenging, but we want you to know that you are not alone. Our resources are designed to provide you with the information and support you need to manage your condition and thrive.
Knowing your cardiomyopathy - becoming independent
When you were a child, your parent or carer might have taken a lot of responsibility in helping to manage your cardiomyopathy, taking you to appointments, keeping up with treatment plans.
As you get older, perhaps you are moving away from home, going off to college, university or starting a new job. This can be a difficult time for you and your parents, and working together will be an important part of becoming independent.
You may have started this process at your hospital appointments through a transition programme.
“Moving from the paediatric clinic to the transition clinic was daunting, but the nurses were very friendly and welcoming. I liked having the independence to go to my appointments alone and being able to ask any questions I had without judgement and my parents. Your condition is yours and it's important to engage with the services so you can learn the details and how you can live life to the full with your condition in mind.” - Emma, Cardiomyopathy UK Youth Panel Member
Transitioning to adult care
Transitioning is when you start to move from the paediatric clinics into the adult clinics usually with a designated programme. Working with your healthcare team you devise a timeline for becoming independent in your care.
Part of this process is learning about your cardiomyopathy, what your medications help you with, and what tests you are likely to have regularly.
During this time, some people might like to start attending appointments on their own, whilst others would prefer to have someone go with them. It’s absolutely okay to ask for as much or as little help as you need. Doctors, nurses and family members may all be present to support you, but remember it’s your appointment and you’re in control.
Top tips for making the most of your appointment:
- Take a friend or family member with you as a second pair of ears. You can also ask for a chaperone or an advocate. You’ll need to ask for this before your appointment.
- If you take someone with you, introduce them to your clinician. Talk to that person before the appointment and discuss what you would like from them. You can also ask that person to step out partway through if there are things you would rather discuss with your clinician in private.
- Take a notebook with you to jot down information.
- Some clinics allow you to audio record the appointment to refer to if you need it later. Speak to your team and see if this is possible.
- Remind yourself of test results and outcomes from previous appointments.
- Try and prepare questions ahead of time. You might think of things between appointments, write these down as you think of them so you don’t forget later.
- You could sit down before the appointment with a parent, carer or other supportive adult and write down any questions you may want to ask.
- Check with your cardiac team to see if you can send your questions to them in advance of your meeting.
- Your health care professionals may advise you to take new medications or make changes to your treatment. Remember, you don’t have to accept these changes, you can choose to say no or wait to decide. Be confident, and have clear, open communication with your doctor about your choices.
Genetic testing
We know that some gene variants can cause cardiomyopathy. If a close family member has had genetic testing, you might be offered a test to see if you have a gene variant.
Predictive genetic testing
If you agree to give a sample of blood or saliva for testing, you will be seen by a genetic consultant, genetic counsellor or specialist nurse who will explain what genetic testing might mean for you. Some people don’t want to know if they have the same genetic variant as close family, whilst others find it helpful to know if they are at an increased risk of developing cardiomyopathy.
Diagnostic genetic testing
If you have been diagnosed with cardiomyopathy which is thought to be genetic and a variant is identified, your close family could then be offered genetic testing. Genetic testing results are complicated so possible results will be explained to you before having testing performed.
Our understanding of the genetics of cardiomyopathy continues to evolve over time, so it is likely that more genetic variants will be identified in the future.
FAQs
Here are a few ways you can remember to take any medications:
- Try setting out your medication for the next day the night before, or consider getting a weekly pill box, these allow you to organise your medication at the beginning of the week and keep track of what you’ve taken.
- Set reminders on your phone. You may find it helpful to use an app that requires you to tick off a task as complete you have taken your medication. If you have an iPhone, you can set this up in the 'health' app.
- Put your medication in the same place and have them at the same time each day.
- If you are away from home, for example going on holiday, consider keeping one set of medication in your suitcase, and one set in your hand luggage, in case of any luggage mishaps.
- Finally, try not to run down your medication, keep spares in, and try to keep some spares on you.
Yes, some people find it helpful to have another person in the room for support or to help keep track of what was discussed. Remember, you can take someone with you for as much or as little of the appointment as you like.
Don’t panic – if it's close to your next dose, then take the next dose as usual. Don’t take double doses. If it’s a few hours after the time you should take your dose and then delay the following dose to gradually get back to normal times.
If you are unsure, refer to the patient information leaflet (PIL) that comes with your medication. You can also get specific advice from your cardiology team, GP or community pharmacist.
Potentially, but this depends on what your hospital can provide. Speak to your hospital and see what they can offer.
This varies from person to person but could include ECG, ECHO, Holter, exercise test, blood tests, or CMRI scan.