In today’s blog, Billie in our Patient Services team spoke to five stem cell transplant recipients about their experiences of infections after a stem cell transplant – and managing infections as well as possible.
Steve (acute lymphoblastic leukaemia, stem cell transplant in 2013)
Were you worried about catching infections after your stem cell transplant?
I think I was! The fact that you are in isolation (because in effect you have no immune system) makes you extra wary about catching anything. I didn’t have that many visitors during the time I was in hospital. But when people came, I was always very cautious and a bit fussy about cleanliness and hygiene. Making sure my boys had washed their hands and that they’d showered before coming to see me. You do get preoccupied with it!
Did you pick up any infections after the stem cell transplant?
I did. I got a fungal infection in my mouth the first weekend I was allowed home after the transplant.
Were you readmitted to hospital?
I was readmitted to hospital on the Monday and was kept in for a couple of weeks. The painful infection affected my gums, tongue and the inside of my mouth.
It was such a blow to go back in so soon! It really depressed me. I’d had a real sense of achievement by being able to go home, and it hit me hard to have that reversed days after getting home for the first time; so much so that they referred me straight to a clinical psychologist on admission.
I saw someone later that week, but luckily by that time I’d started to get on top of it and the treatment was working. So I felt better about myself.
The thing that hits you when you get an infection is that you are so conscious of how low your immune system is! That’s frightening. You think, ‘If I picked up a bad infection, that could be the end.’
So it’s a lot to deal with emotionally, too.
What did you and the people close to you do to avoid infections?
We were sensible. I didn’t go out for quite a while afterwards, other than to hospital. I avoided contact with my dog. I’ve never liked him licking my face anyway! And I just kept up good hygiene and encouraged it in my family.
What’s your top tip for managing infections after a stem cell transplant?
There’s probably two: exercise good hygiene and cleanliness. But the other thing I would say to patients is, ‘Be aware of what your body is telling you.'
Tune in to it and recognise when something feels different or off. And tell your clinical nurse specialist straight away to get things checked out, sooner rather than later.
'You can control your food and your own hygiene, but you can’t control if someone sneezes near you. So that can be daunting.'
Rachel (acute myeloid leukaemia, recipient of two stem cell transplants in 2015,2016)
Were you worried about catching infections after your stem cell transplant?
Yes! I was just really aware that I was weak and vulnerable.
They advise you not to go into crowds, and at the time I was living in London, so even getting to and from the hospital was a concern from me.
The Tube is always busy, so then there’s the added financial worry of getting taxis, or having to weigh up if I could I afford that being out of work for so long.
It was quite stressful and I just didn’t want to have to go back into hospital so badly! I’d had enough.
You can control your food and your own hygiene, but you can’t control if someone sneezes near you. So that can be daunting.
Did you pick up any infections after the stem cell transplant?
I got a stomach bug that hit me quite hard, but thankfully not hard enough to go into hospital.
It was only 3 weeks after my second transplant and I was really anxious that I’d have to go in.
It took me over a week to recover, whereas for a healthy person it might have cleared up in 48 hours. Then hot on the tail of that, I got a cold! Probably just because I was run-down already.
What did you and the people close to you do to avoid infections?
I have pets, so there was some added awareness in terms of hygiene with them. With the cat I always made sure I wore gloves when emptying the litter tray. And even though I wore gloves, I washed my hands afterwards every time!
I cleaned the tray every single day, even when he didn’t use it, and went out in the garden. It was similar with cleaning up after my dog - gloves and lots of hand-washing.
I know some people might be afraid of having pets after a stem cell transplant or temporarily rehome them, but my pets were fantastic to have in my recovery.
They give you a purpose; a reason to get up and out of bed when you are at home on your own. From a physical point of view having a dog was brilliant as it made me go out for walks. Even if it’s a really short one.
There were loads of times when I didn’t want to go for a walk, but having a reason to go made me! And afterwards, although tired, I felt better and glad that I’d gone.
Getting fresh air, seeing a bit of nature, even if it’s trees on your street or a park or a field…it’s a good thing for you.
It absolutely worth any risk for me. I would have been lost without them for company and motivation to get better.
What’s your top tip for managing infections after a stem cell transplant?
I think psychologically, try and not take it too seriously as you can get a bit paranoid. Which will add extra stress to what is already a difficult time.
You can cook your eggs till they are rubber, for example…you can take it too far. Just practice really good hygiene. My handbags were all full of hand sanitisers, as was my car. They were everywhere! So I was never without one.
'At work, when I went back to doing a few days in the office, I was always given a separate desk a little away from everyone else. That helped me a lot to feel confident in returning to work.'
Rayhan (Hodgkin’s Lymphoma, cord transplant in 2016)
Were you worried about catching infections after your stem cell transplant?
Yes, very much so. I was prepared thoroughly by my transplant team about the risk of infection and how it can be very serious for a transplant patient, so I think it’s only natural to feel some trepidation about that.
Did you pick up any infections after the stem cell transplant?
I got really severe shingles and that was painful, very painful. They took me off medication, as I was 9 months out and doing well too, but that was when it hit me – which I understand is quite common in transplant patients.
Were you readmitted to hospital?
I was, to my local hospital. I was in for six nights. Of course I wasn’t happy about it, but it wasn’t too much of a blow for me. I’d got my head around readmission being a likely part of my transplant recovery.
What did you and the people close to you do to avoid infections?
Virtually wrapping me in cotton wool, to be honest! My wife especially, making sure she took extra care washing her hands whenever she went out or was close to me, etc. At work, when I went back to doing a few days in the office, I was always given a separate desk a little away from everyone else. That helped me a lot to feel confident in returning to work.
What’s your top tip for managing infections after a stem cell transplant?
Be more vigilant than usual with hygiene – both your own and the hygiene of people close to you. I would also say, ‘Don’t put pressure on yourself to socialise or see people outside your close family.’
If you remember that getting a bad infection can potentially jeopardise everything you’ve been through with the treatment up until this point, it’s worth missing a few social engagements you might be expected to attend.
It’s OK to be strict with others about this, as it’s important to avoid making yourself ill!
'Infections wipe you out and it’s a real rollercoaster in recovery. You feel better for a while, then an infection hits, and your energy is gone again, then it comes back up… Even if it’s not serious enough for a hospital admission, it still knocks you back.'
Emma (MDS,
recipient of two
stem cell transplants in 2011 and 2016)
Were you worried about catching infections after your stem cell transplant?
Probably not, I think I’ve always sat in blissful ignorance!
Before my first transplant, receiving treatment for my MDS, I’d never really had any infections; I’d been so lucky.
I lived with Aplastic Anaemia and literally no immune system for years, so when they were talking to me about the risks of infection post transplant I was like, ‘Well, I’ve had no immune system for ages, I don’t see how it’s going to be any different’
That was my general attitude as a young person. For the second transplant I worried a lot more.
Did you pick up any infections after the stem cell transplant?
One or two! I had two Hickman line infections, in fact.
Infections always seemed to hit at a point when you really, really didn’t want them to, as well. I’d planned my first proper night out in ages, it was New Year’s Eve eve and me and my friends were going to this fancy event in London where we’d all bought new outfits. Of course, I got ill that week, and didn’t end up going!
Also colds and coughs tend to sick around so much longer as a transplant recipient.
Were you readmitted to hospital?
Yeah, I was in hospital for the Hickman line infections and a sinus infection. Both infections came days and weeks after being discharged from hospital after isolation.
So you get home after so long and think, ‘Everything is fine now, I can focus on getting better’ but then it’s back to hospital, back to having crappy food you don’t want to eat, back to being monitored all the time…which just makes you realise how ill you still are.
Infections wipe you out and it’s a real rollercoaster in recovery. You feel better for a while, then an infection hits, and your energy is gone again, then it comes back up…
Even if it’s not serious enough for a hospital admission, it still knocks you back.
What did you and the people close to you do to avoid infections?
I’m not a believer in locking yourself away in your house to try and avoid infection. Personally, I think your mental wellbeing is more important, as is building up your physical strength and getting back into society.
I did try to avoid unnecessary risks where I could, though.
For example, if I wanted to go shopping I wouldn’t do it in busy, peak periods. I had to use public transport because driving was long and complicated, so I made sure I had hand sanitiser. I also used sanitiser at the gym, so I could use the equipment I wanted to.
Little adjustments, and more awareness around hygiene, so I could continue to live as normally as possible.
What’s your top tip for managing infections after transplant?
My tip would be to take a holistic approach.
For me, keeping mentally well and getting the body moving and getting stronger all the time is an important part of fighting any illness and getting healthy again.
Anything that takes your mind off worrying is important. Because if you are stressed, you are more likely to get ill.
So make yourself stronger and focus on something positive, as it helps your overall wellbeing.
'Be aware that you will get infections but try not to panic. Your medical team will know how to treat them and have a lot of experience in doing so. Tell all of your friends to let you know when they have an infection for the first year or so- it's better to stay away until they're better. They also may need reminding, as a few of mine did!'
Ashling (acute myeloid leukaemia stem cell transplant in 2012)
Were you worried about catching infections after your transplant?
Very much so. I so was conscious that I had what was effectively a baby's immune system and so wouldn’t be able to deal with infections and viruses. Consequently, I felt significantly weaker than my friends/other people of my age group, which sometimes made it harder to keep up.
Did you pick up any infections after transplant?
Yes, quite a few! I managed to catch the flu three times in one year, despite having had the flu vaccination! (Please don't let that put you off getting the flu jab - it's still well worth it as there are so many different strains around).
For the first year or so, I caught literally everything I came into contact with, but as time went on, my immunity got better.
For the first couple of years out of transplant, it took me longer than my 'normal' peers to shift bugs, but I'd say it takes me about the same amount of time to do so now.
Were you readmitted to hospital?
Yes, but for a secondary cancer, not for infections.
What did you and the people close to you do to avoid infections?
My family and boyfriend have to get the flu shot every year for the rest of my life, and so do I. My Consultant said that anyone in close contact with me should be vaccinated. Though I'd argue that everyone should be vaccinated, anyway! The flu shot is way easier than the flu itself, trust me!
What’s your top tip for managing infections after transplant?
Be aware that you will get infections, but try not to panic. Your medical team will know how to treat them and have a lot of experience in doing so.
Tell all of your friends to let you know when they have an infection for the first year or so- it's better to stay away until they're better. They also may need reminding, as a few of mine did!