Hayley Leonard has worked as a nurse in stem cell transplant care for the past 10 years and she’s recently started as our first Anthony Nolan Post-Transplant Nurse Specialist. Here Hayley answers your questions about dealing with infections after transplant.
It’s because your immune system is ‘immature’ and gradually recovering. We’ll be checking your white blood cell counts when you come in and they need to reach a certain level before you can go home. Even when you are home you’ll need to be careful, so it’s important that you let someone know if you have a temperature or feel unwell.
I find that some patients put too much pressure on themselves to get back to health really quickly. But actually it’s really normal to get an infection at some point after transplant – this is a very natural process of recovery.
What type of infections might I get?
The most common ones we monitor patients for are cytomegalovirus (CMV), Epstein Barr Virus (EBV) and adenovirus, but you’re also more at risk of other infections. A healthy person can have CMV and not even know about it, but if it gets reactivated in someone who’s had a transplant it can become a problem – as your immune system is still recovering. But you’ll be having regular blood tests for CMV and these other viruses so we can give you treatment early if you need it.
What are the signs that I have an infection and what should I do about it?
One of the main signs is a high temperature – if it’s above 38oC you should contact your key worker at your transplant centre, even if you feel well. Equally if you have symptoms like fever or shivering and feeling cold but don’t actually have a high temperature you should still contact your key worker.
In the first few months after discharge from hospital, if you have a temperature you might need to come back into hospital for intravenous antibiotics (through a drip). As time goes on and your immune system gets stronger, if you have signs of an infection you might only need to have oral antibiotics (usually tablets). But you should always contact your key worker if you are concerned.
While it’s vital you have a thermometer at home, don’t go overboard – you don’t need to check your temperature every hour, just once a day is fine! As you gradually recover and the months go by, you can be more relaxed about this.
What tips and advice do you give to patients to minimise infection risk once they leave hospital?
Try and avoid people with coughs, colds and diarrhoea. It can be difficult if you have children or grandchildren – it’s great for you to see them, but they tend to pick up and carry bugs more readily. A good tip is to let their school know that you’re at risk of infection, and say you want to be kept informed of any bugs going round the school.
It’s best to avoid large crowds and public transport for a few months after your transplant while your immune system recovers but it’s also really important you don’t totally isolate yourself. You can do out more as you gradually gain more confidence.
Do I need to clean my house every day?
It’s best to use common sense and make sure your house is as clean as possible, change your sheets regularly and so on. Some people like to do a thorough spring clean before they go home but that might be a bit excessive! Just do what feels best for you. Your body is generally used to the environment in your house.
I’ve got pets at home. Should I get rid of them?
If someone can look after your pets for a few months after your transplant, that would be wise. If that’s not possible just make sure you wash your hands after stroking your pets and don’t let them lick your face or jump all over you! Don’t touch cat litter or clean up after a dog and make sure they’re de-fleaed.
Is there anything I can do to reduce my risk of infection at work?
In my experience, lots of patients have the best intention of going back to work really soon after their transplant. But in reality many find they can’t go back for about six months, mainly because they’re really tired and their body’s still recovering, and by that stage you’re normally at much less risk of infection anyway.
But it’s sensible to take some precautions if you can. So if you have a job where you’re in contact with the general public a lot, like working on the shop floor of the supermarket, see if you can make any changes to your role where you’re less exposed.
How long will I have to take immunosuppressant drugs?
You’ll be on drugs like cyclosporine for at least a couple of months, the team at the hospital will make sure your coping well and slowly wean you off them. When you come off these type of drugs there’s a risk you’ll develop graft versus host disease or GvHD – this is where cells from your donor attack your body. Again, it’s all about balance and doing things slowly, we’ll monitor for signs of GvHD as we withdraw the drugs, it’s very individual for each patient.
Is there anything I can do to boost my immune system?
Unfortunately there’s no magic potion for boosting your immune system. In general, you should try and keep fit and well by eating a healthy diet, exercising and taking vitamins. But there’s nothing else ‘special’ you should be doing – other than making sure you get all your childhood vaccinations again as soon as your transplant centre recommends them. Some patients will always be a little bit more vulnerable to coughs, colds and bugs after a transplant, but this does vary.
What are the most important things you tell your patients about fighting infection?
I can’t emphasise enough that having some bumps along the road with infections and feeling unwell is a normal part of recovery. The nurses and doctors supporting you are very experienced in dealing with infections, so it’s good to trust in their care. It’s natural to feel anxious about infection after your transplant, but it’s important to try and balance this with getting back to a normal life.
You’ve been through so much, you shouldn’t have to hide yourself away, and not touch your partner or hug your grandchildren. Recovery just takes a long time and you can’t underestimate how heavy a treatment a transplant is – it’s important to have goals of getting back to work and everyday life, but at the same time don’t be too hard on yourself.
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DISCLAIMER: At Anthony Nolan we take great care to provide up-to-date and accurate facts about stem cell transplant. We hope the information here will help you to look after yourself. Each transplant centre will do things differently, so this blog is just a general guide and it’s not intended to replace advice from your doctor. Please speak to your transplant team for more details about your own situation.