Your medical team will continue to check on you regularly to make sure your new immune system is working properly and to monitor any side effects.
We have set out a general timeline of how often you are likely to be seen and when certain things will happen. However, everybody’s recovery is different and some people will need to visit the hospital more often, for much longer into their recovery.
The frequency of these appointments will decrease over time and eventually you will be seen yearly, to check everything is still ok.
Your medical appointments and contact details of your medical team can be tracked and saved using Anthony Nolan’s free My Transplant Tracker app.
In your early recovery, you will have one or two check-ups with your medical team every week. They will:
‘I'd have to go back to hospital once a week for check-ups, blood tests and blood transfusions on a fairly regular basis as well as other bits and pieces to keep my strength up, my iron levels up and keep my white cell levels at what they needed to be. That lasted for about four months.'
Jimmy, who had a stem cell transplant in 2014.
You will probably still have regular check-ups but they will happen less often. As you approach one year post-transplant these check-ups will probably be fortnightly, but it varies from hospital to hospital. During this time, you may also have a bone marrow test (where a small bone marrow sample is taken and analysed) or a PET-CT scan. They are both used to monitor your progress and to confirm that your blood cancer or blood disorder has not returned.
You will probably be monitored less often now, perhaps only every three months. But you’ll always have a point of contact, normally your clinical nurse specialist (CNS) or transplant co-ordinator.
You will have a full health assessment after every year. Your medical team will keep an eye on whether you’re experiencing any late effects of transplant.
As well as more general health checks, you may also be referred to specialist doctors, who are experts in one type of treatment or part of the body. This often happens if you have GvHD that affects certain organs. You will also be advised to regularly see other specialists such as a dentist, optician and gynaecologist (if you have a vagina) so if any problems occur, they can be treated early.
There will be times when you need to have certain treatments or procedures. Some of these are important milestones in your recovery that show you are making good progress. Your medical team will try to arrange them alongside other appointments so that it’s more convenient. However, others will only be needed if problems develop.
Central line removal – Your central line can risk causing infection, so it will be removed as soon as it’s no longer needed, normally a few months after transplant. Removing it is normally done at the outpatient clinic using a local anaesthetic. You may need a stitch or two to help the wound heal.
Vaccinations – During your transplant your immune system is replaced, which means the vaccines you had as a child will no longer work. You will be unable to have any vaccine that’s based on a live virus or bacteria because they are unsuitable for people with a potentially weakened immune system – these include the TB and MMR (measles, mumps and rubella) vaccines.
Your transplant team and GP will schedule and give your new vaccinations to you. For some vaccines this normally happens at least six months after transplant but others are given after two years.
Your family should also consider having the seasonal flu vaccine every year. It can be given through their GP or local pharmacy.
Blood transfusions – If your blood cell or platelet counts are low, your medical team may decide to give you one (or more) blood transfusions.
If you’re still early in your recovery, you may need to have irradiated blood. This is donated blood that is treated with radiation before it’s given to you – this removes the white blood cells and reduces the chance of you having a reaction to it. Your medical team will give you a card to carry with you so that doctors know to give you this type of blood in an emergency.
Lymphoma Action has more information about blood transfusions on their website.
Donor Lymphocyte Infusion (DLI) – If your chimerism score (the proportion of blood cells that come from your donor compared to your own) is low, you could be given a ‘top-up’ of cells from your donor. This simple procedure is very similar to a blood transfusion.
More information on DLIs is available here.
Hospital stay – Unfortunately it is likely you will have some setbacks in your recovery and you may need to spend some time back in hospital. In early recovery, when your immune system is rebuilding, infections can be picked up very easily. This doesn’t mean that your transplant hasn’t worked – it’s a natural part of your recovery that cannot always be avoided.
It’s ok to feel frightened, down or frustrated when returning to hospital – but it will enable your medical team to give you the best possible treatment and support. You can find out more and access extra support in the Recovery – mind section.
‘I was pretty fortunate - I got a few bugs but I was able to fight them off at home. It wasn't until I was a year on from my transplant that I got septicaemia and pneumonia, and was in hospital for five days.'
Joanna, who had a transplant in 2016.
Information published: 13/11/18
Next review due: 13/11/21