Whilst in hospital

Preparing for hospital visits and stays 

Advice and tips to help you get ready for hospital when you have aplastic anaemia. 

This advice is for anyone who is going to hospital because of their aplastic anaemia. You may be attending as an outpatient for hospital appointments such as consultations, check-ups, treatments and follow-ups. This means you will go home on the same day. 

You may also sometimes have to stay in hospital overnight for longer periods. We have collected some tips here from other members of the aplastic anaemia community to help you prepare for hospital, whether it’s just for a day visit or for a longer stay. 

Going to the hospital 

It helps to know which hospital you will be going to and whether it is a specialist unit. 

This depends on what services are available in your area. It is only natural to feel anxious, but most people are more confident when they are in familiar surroundings, so ask your consultant if you can visit the ward beforehand.  

Aplastic anaemia is a rare condition, so specialist staff caring for you will be treating people with other conditions too, such as cancer. Don’t be shocked if you are treated on a cancer ward. Aplastic anaemia isn’t a form of cancer, but some of the treatments are similar. 

Familiarise yourself with the treatment you are going through. I spoke with the doctors and read books on transplants, and still found myself woefully underprepared for the experiences I was due to go through. I’d rather prepare myself for a real fight and then be pleasantly surprised, than go in naively and get a harsh dose of reality. Ben, diagnosed at 22 

Before your appointment 

You will have lots of questions going around in your head, but once the doctor asks ‘Do you have any questions?’ it can be really hard to remember them, so it can help to prepare your questions beforehand. That way you will feel more in control of what’s happening to you. 

There is no such thing as a stupid or embarrassing question, so if you want to know about something, just ask it. You probably won’t be the first person to ask the doctor that questions, but it’s important that you get the information you need. 

You might want to make notes to refer back to at a later stage, so having a notebook for this purpose can help keep information in one place, or you could use the notes function on your phone. 

You might want to ask a member of your family or a friend to go to your appointments with you. They can help ask questions, make notes, or be there with you for moral support. They will be able to chat with you after the appointment and help you check or clarify what was discussed, as it might be hard to take it all in by yourself. 

During your appointment 

Your medical team are there to help you, so being able to have an honest and open talk with them is really important when discussing your symptoms and feelings. 

Remember that they will have seen many patients over the years, and although this is all new for you, they are used to seeing people with aplastic anaemia just like you. 

Your doctor might use medical terminology that is new to you. Don’t be afraid or embarrassed to ask them what it means. You might find it helpful to repeat back what you have understood in your own words. Avoid using words you are unsure about, because this might lead to misunderstandings between you and your medical team. If you don’t understand what they are telling you, just ask them to explain things in a different way. 

Find out if any of the information shared with you is available in a leaflet or on the internet, and whether it will be recorded in a letter from your medical team. 

After your appointment you might wish you’d asked or answered a question differently. This is normal, and it is important not to beat yourself up about it. There will be other opportunities for you to ask your questions. Make sure you keep a note of them! You can ask your doctor who to contact if you have any follow-up questions. 

If you are unsure about something happening to you during a procedure or treatment, let someone know. Sometimes things can be changed or done differently to help. It can be hard speaking up, and if you don’t feel comfortable, you can ask to have someone with you who can help. 

Before a hospital admission

When you know you are going to be admitted to hospital for a longer stay, here are some tips to help you prepare: 

• Look out for and attend any hospital pre-transplant or other treatment days that might be on offer. You'll learn more about the process, familiarise yourself with the wards, learn about the food you can eat and much more
• Get everything in order - for example, your finances, who'll pick up your children from school if you're a sole carer, who will look after your pet.
• If you are able to, prepare some meals ahead of time and store them in the freezer, this will help you when you leave hospital.  Depending on the treatment you are receiving, your medical team may advise you to follow a clean (neutropenic) diet when you leave hospital so make sure any meals you prepare follow these guidelines just in case.
• Spend some time with family and friends - depending on the treatment you are receiving, your visitors may be limited for a period or you  may feel too tired to socialise.
• Try and build up your fitness before you go into hospital if you can - this may not be possible but it may help speed up your recovery
• Give some thought to what will happen once you are sent home - your activities will be limited for some time whilst you recover.

Overnight and longer stays 

You may have some of your treatment for aplastic anaemia as an inpatient. This means that you will have to stay and sleep overnight at the hospital. 

Every hospital will have a different setup and the type of room or ward that you stay in will also vary depending on why you are in hospital. 

Some hospitals have a day room where you can watch TV and chat to other people, or somewhere you can prepare a drink or snack. There may be a room available where you can grab some quiet time to yourself (as this can feel in short supply in hospital).  

Some of you might have to be in an isolation room, which can be scary, but you may be able to have a small number of visitors and be able to take in things from home, such as your own pillow and duvet, to make it more comfortable.  

Tr to find out in advance what your room/ward will be like. What may seem like small, unimportant factors can make a huge difference to your stay. 

Here are some questions you might like to ask about overnight stays: 

Having visitors 

Your medical team knows that being able to see your loved ones makes a big difference to your mental health, and all hospitals operate a policy of allowing visitors at certain times. 

If you are staying in isolation, following a transplant or after anti-thymocyte globulin (ATG) treatment, for example, the rules about who can visit and when will be different. You will be able to get information about this in advance, as it will help you to prepare for your stay. 

There are likely to be days when you feel too tired to see people or aren’t in the mood to talk to anyone. That’s totally fine and an understandable part of recovery. To avoid any problems, ask family and friends to text you before they visit, to check that you feel up to it. 

What to take with you 

What you take into hospital with you will depend on how long you are going to stay, the reason for your stay, and the hospital you will be staying in. While it’s really important that you have time to rest both mentally and physically, you will need to keep your brain active, as this will give you a positive focus and will help the days pass more quickly. 

Having familiar and favourite items from home around you will help you to feel more at ease. Remember that you can always ask family members or friends to bring items along with them when they come to visit, so you don’t need to bring everything all at once. 

Some items to consider taking to hospital for overnight stays: 

Leaving hospital 

When it is time to leave hospital, you might feel a mixture of emotions. You might have been looking forward to getting home, but as this becomes a reality, you might feel nervous or anxious. 

The regular checks and round-the-clock care you have received might make you feel more safe and secure, and you might have made some close friendships with other patients and staff at the hospital. Keeping contact details for any advice or support you need might reassure you. Once you are home, be patient and kind to yourself. Take your recovery one day at a time, and be proud of moving on to the next stage in your recovery. Remember that recovery is not a straight line, and some days you will feel better than others. 

We understand that a diagnosis of aplastic anaemia can be a difficult and worrying time for you, and we are here to help. If you have any questions or worries at all about this, please talk to your family, your loved ones and to the medical staff who are treating you. 

The Aplastic Anaemia Trust has lots of support to offer you, including video chats, emotional wellbeing courses, webinars and a friendly helpline for anything you might want to chat about. 0300 102 3202