• Outpatient or ‘Day‘ Appointments

     

    Chances are that if you are reading this, you’ve had a few outpatient appointments already. Hospital settings – and waiting rooms – vary a LOT, and how you feel about going for appointments will be affected on by things like:

    • Whether you find a busier or quieter environment easier to be in
    • How the person you go with feels about it
    • How worried you are
    • Whether or not you will also be having a test or scan that is unfamiliar

     

    Here are a few ideas that might help:

    • Allowing yourself plenty of time to get to your appointments will lessen stress
    • Find a café (in or near the hospital) for chilling out if you are early, or to use afterwards as a place to think through what was said
    • Don’t rush back to work or school unless you want to
    • Take time to process any news (good or bad) and ask any questions to help you fully understand what you have been told
    • Take someone with you and let them know what you do and don’t find helpful. Ask them to take notes in appointments so you can just talk, and listen.
    • Take something to make waiting less boring, like food, water, a gaming console, book, or music, etc.
    • Reward yourself with a treat afterwards for ‘adulting like a boss’; e.g. something to wear, cake, a film night , a drink, fancy bath stuff, etc.

     

    More helpful pointers can be found in ‘Transitioning to Adult Services’ (even if you didn’t go through children’s services first) and also in our publication, ‘Working with your Medical team’.

     

     

    Staying in Hospital for Surgery or Tests

     

    A stay in hospital of any length can feel pretty daunting. You might have unanswered questions or worries about the surgery or tests you are going to have.  Knowing more about what it might be like can help you feel more prepared and in control, and less anxious generally.  Try talking to others in the AMEND Young Adult Whatsapp Group to see if someone else has been through what you are going to be going into hospital for (more details on joining this in Dealing with Your Diagnosis).

     

    Here are a few key things to think about:

     

    Food

    We’ll be brutally honest here; most people find hospital food a ‘bit challenging’ even if you love/d school dinners. Not in a ‘so-horrible- it-must-be-good-for-you’ kind of way; more in a ‘why-am-I-able-to -snap-this-pool-of-baked-beans-in-half?’ sort of way.

     

    Eating is an important part of recovery, so ask friends and family to bring you in some healthy snacks or meals that you would feel okay about eating if you don’t like the hospital food.

     

    You’re not going to have access to a personal fridge and oven though, so keep that in mind! Nice sandwiches, or soup in a flask is the way to go.

     

    If you are worried about whether the ward allows your own food, or whether you are able to eat certain foods, check it out with the ward nurses or your doctor.

     

    Entertainment

    Being in hospital can be VERY boring. So bring something with you. Books and magazines are a reliable form of distraction, and it’s amazing how quickly time can fly.  When it comes to electronics (laptops, handheld consoles, phones etc) you’ll be at the mercy of battery life, so bear this in mind and don’t forget your chargers!

     

    Having said that, each hospital will have a different rules about plugging in ‘non-hospital’ electrics, so check this out in advance with the ward before you go in, and adapt accordingly (e.g. bring a portable power pack with you).  You might find you ‘nap’ more than usual in the day anyway (especially if you are recovering from surgery) and night-time in hospital can be pretty noisy.  Consider taking ear plugs whether or not you are a light sleeper!

     

    Braces, jewellery, piercings, tattoos – and what to wear

    If you have permanent teeth braces, ask if you need to have them temporarily removed by your dentist beforehand. You’ll need to take out any piercings or jewellery too. If you have a tattoo that you don’t want injected or cut into, ask if there could be a way to avoid that.

     

    Take day and night clothes with you that are easy to take on and off, and comfortable. If you are having an operation somewhere in particular (e.g. stomach, neck) give some thought to what won’t irritate or rub that area when you get dressed.

     

    Jargon – busting: IV’s , ITU’s, MRI’s and CT’s, ‘local ‘ or ‘general’ anaesthesia

     

    Hospital staff can use a lot of shorthand, and forget that not everyone knows what it means. If someone uses a term or phrase you don’t understand, just say simply ‘I don’t know what that is, could you explain please?’  You’re not stupid.

     

    Pain relief , or difficult investigations

    Having things stuck in you, up you, or down you isn’t easy for anyone. We’d be lying if we said there aren’t going to be some things that might hurt – even if just injections for scans, or taking blood. But if something’s really painful, difficult to bear, worrying you, or you are not coping with – let someone know. They are there to help support you however they can, so do speak up if you are struggling.

     

    Going in for an operation

    Usually you’ll be asked not to drink or eat from about midnight on the day of your surgery. It’s important to stick to this, but if you do forget , just be honest and let someone know.  It’s likely that your operation will be re-scheduled as it wouldn’t be safe to have the anaesthetic.

     

    If you take regular medication, ask if you should take this as normal (or not) on the day of your operation. Also ask if you should take along enough medication with you for your stay.  If they say no, ask them to check that it will be in stock at the hospital pharmacy for when you go in.

     

    On the day you go in, you’ll usually be put into hospital gown (yes, they are open at the back!) and given an ID bracelet to wear, and have things like your blood pressure taken . Sometimes people also go into hospital the night before their operation. You’ll be asked questions like if you smoke, how much you drink, or any drugs you’ve used. Do answer honestly – it’s all just to help keep you well during the operation itself. No-one is going to judge you. If you feel awkward because a parent is still with you, just ask them if you could have a few moments with the nurse on your own.

     

    When you wake up, you might feel frightened, relieved or just very sleepy. It’s not unusual to feel cold, or thirsty. If so, let someone know so they can make you comfortable. You might have some ‘tubes’ in, so remember to relax and just let yourself get used to how it all feels. You are ok. You’ll stay in the ‘recovery room’ for an hour or so, and then you’ll go onto the ward.

     

    Getting moving – it’s likely that you’ll be encouraged to get up and about pretty quickly the next day – or even later that same day. Try to grit your teeth and follow your physiotherapist or nurses advice, even if you just want to swear, curl up and go back to sleep! This is because bodies recover quicker if you get them moving. Make sure you rest when they tell you to too.

     

    Being on the ward: What am I doing here ??

     

    If you go onto an adult ward, the chances of you being the youngest there is extremely high. Adjust your expectations accordingly, because there aren’t going to be any chats about the last episode of Love Island with your fellow patients. On the upside, people are often extra nice to you because of your age relative to most other people on the ward!

     

    Try to be considerate of your fellow patients (even the annoying ones) and letting your nurses know you appreciate them with a few ‘thank you’s’ now and again means you are much more likely to get your dead phone charged in the staff room ;-)

     

    Some bits of being in hospital can be pretty embarrassing. Don’t forget the nurses/doctors have seen it all before, and it’s surprising what you’ll get used to – like how many times you’ve done a poo that day, and what it looked like!  If you have periods, take your usual products with you even if you are not due. Sometimes periods turn up unexpectedly, and it helps to be prepared if so.

     

    With respect to visitors, there are likely to be ‘set visiting hours’ when people can come. If you’d like to see someone but only have energy for 15 minutes, just let them know. It also okay not to see someone at all if you don’t feel up to it, or just see the people that you are most comfortable with. It’s up to you. Could you ask a relative to help you manage this aspect of things and be a ‘go between?’

     

    If you have parents who aren’t together and you’d find it easier to see them at different times, let them know before your surgery, and ask them to respect this. If you have any worries about this, let the nurses on the ward know.

     

    N.B. For younger patients, wards can also sometimes make extra visiting times available. It’s not always possible, but ask if you’d like Mum/Dad/partner around a bit more to help out whilst you are recovering.

     

    www.youngmenshealthsite.org ‘Preparing for Inpatient or overnight surgery’ has more information about being in hospital (and its relevant for women too)

     

    Going home

    Once you’re let out, make sure you get the details of people to contact if you are worried about anything once you get home. Even though you’ve left hospital, you will still be recovering and this might take some time. Follow the aftercare advice given to you, and be patient with yourself. There might be ‘ups and downs’ emotionally and physically for a while – you’ve been though a lot!

     

    Any worries, check them out at your next appointment– or before if needs be.

     

    You did it!

  • Young People Blog!

    We love this blog post about surgery by SDH syndrome member, Ashleigh Condon……Click here to read