Starting university or a new job can be an exciting time, but may seem a little daunting when you have cardiomyopathy. It's important to remember that having cardiomyopathy does not define you or limit your potential for success. Instead, let it empower you to advocate for yourself and seek the resources necessary to thrive.
Here are some things to consider that may help you:
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Make sure you know about your cardiomyopathy diagnosis and history. Transitioning from the paediatric service to the adult service may have helped you understand more about your condition and how to manage it.
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If you’re moving to a new area for university, college or a new job, make an appointment to see your cardiologist at least 6 months before you move. You may need to be referred to another cardiology team. You may need to make sure all necessary tests have been done (ECG, echocardiogram, ICD check, etc.). While there, get copies of your clinic letters/test results.
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Get a health care plan written by your Nurse specialist. This outlines your cardiomyopathy condition clearly, worrying symptoms, treatment and what to do in an emergency.
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Are you taking medication? - Make sure you know the name of the medication, how is it taken, side effects and whether any foods or drinks should be restricted (e.g., alcohol). Know how to get your repeat prescriptions via local pharmacies. Keep a note of your medication routine and when prescriptions need filling in advance.
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If at University/College Locate the campus disability Support service. They will be able to help you navigate the campus life and help you access relevant other support agencies ie: finance/emergency procedures, in line with your cardiomyopathy care plan.
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Wear a medical ID bracelet or carry an ICD card (if you have one) in case of any emergency.
If you have an ICD – Make sure you keep up with your pacing department and know how to access and carry out remote downloads. Know where to locate a defibrillator on school campus or if living in halls. Make your roommates aware of your device and how to help you in an emergency.
Socialising
Moving away from home and meeting new people is a time for growing and learning. You will need to keep a few things in mind as you experience new things:
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If experimenting or socialising around alcohol, tobacco or recreational drugs it’s important to know they may cause irregular heart rhythms and other cardiac complications.
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It's also good to be aware that caffeine can also promote arrhythmias. Energy drinks contain large amounts of caffeine and are best avoided.
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If you become unwell, don’t ignore new or worsening symptoms, including fevers and chills. Usually, earlier diagnosis and treatment are best.
Work and your rights
Work - Cardiomyopathy shouldn’t stop you from having a career. However, you may need to be open and honest with your employer about your cardiomyopathy. You will need to think about the working conditions you are working in, such as:
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working long hours on your feet
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driving heavy machinery
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any risks from the environment to your health.
Have an open discussion with prospective employers about your options. With the right support, staying in work can make you feel better and give you financial security.
Talk to your employer
Talk to your employer as soon as you feel your cardiomyopathy is affecting your ability to do your job, so you can find a solution sooner rather than later, that suit both of you. For example, it may be possible for you to work part-time or from home some days.
The Equality Act 2010 protects people in England, Wales, and Scotland with a disability at work. ‘Disability’ includes a physical impairment that has a substantial and long-term adverse effect on your ability to perform normal day-to-day activities.
Where possible, this might include changing or modifying tasks, altering work patterns, installing special equipment, allowing time off to attend appointments, or helping with travel to work.
Finding the right balance for you
Keeping up with a busy life can sometimes be exhausting so being aware of your limitations will be important. If you are finding after a full week at work/school/uni, you are having to spend the weekend in bed, have a look at your workload and adjust your timetable. Having support at home/work/school/university will help make the balance and transitions easier.