After having a donor stem cell transplant
You will be able to go home when your blood count has gone up and your risk of infection is reduced.
You will still need a lot of monitoring and will have to come back to the hospital for regular checks.
The first few months out of hospital
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For the first 2-3 months after leaving hospital, you’ll need frequent blood tests to check your blood count. You may also have to take regular doses of several different drugs.
Antibiotics, such as co-trimoxazole (Septrin®), and anti-viral drugs, such as aciclovir, are given to reduce the risks of infection. You’ll also have drugs to reduce the risk of GvHD. The doses of all these drugs will be checked regularly. Depending on the results of your blood tests, the dose of your drugs may need to be changed.
Occasionally you may still need to have blood or platelet transfusions. These can usually be given as a day patient.
If you become unwell, you’ll need to go back into hospital. It’s quite common for this to happen once or twice after a transplant. This is not a major setback, although it can be very worrying for you.
It’s very important to take great care of your health during this time. There are a number of possible problems that might occur because your immunity is reduced.
Get in touch with your hospital immediately if you have any of the following symptoms:
feeling cold and shivery
a persistent temperature over 37.5°C (99.5°F) for more than two hours
infections (for example, of the skin, mouth or bottom)
breathlessness or breathing difficulties, as it’s particularly important to have these symptoms dealt with quickly
feeling sick (nausea) and being sick (vomiting)
cough or cold symptoms.
CMV is a viral infection that many people will have had as a child. It normally causes symptoms similar to a mild bout of flu. However, like the chickenpox virus, it‘s never totally destroyed; it can stay hidden in the body, kept under control by the immune system. After a transplant the virus can start to grow, as the immune system is too weak to fight it. CMV infection can be serious and can affect different parts of the body including the lungs, bowel, eyes and occasionally the brain.
You’ll have a blood test to check for CMV before your transplant. Your donor will also be checked. Where possible, you will be matched with a donor with the same CMV status as you - either CMV positive or negative.
After your transplant you’ll be monitored regularly with blood tests to check for the virus. Even if you and your donor are CMV negative, you’ll still be checked because there’s the possibility of a new infection developing. If CMV levels begin to rise, detecting this at an early stage makes the virus easier to control.
If the levels start to rise rapidly after your transplant or become too high (reactivation), you will be started on anti-CMV treatment. Treatment is with tablets or sometimes intravenous drugs. You may be admitted to hospital for treatment even if you’re feeling well.
Very few people have any major problems after leaving hospital. However, if possible, you should have a discussion with your doctors before you leave hospital about what you should do if anything happens that worries you.
You should always carry a 24-hour telephone hospital contact number with you. If you’re worried, you can ring the hospital at any time of day or night to speak to someone who understands the treatment you’ve had. The doctors and nurses on the transplant unit or ward would rather be contacted unnecessarily than risk you becoming ill at home.
If you feel unwell and are unable to contact the hospital, get someone to take you back to the hospital immediately.
The first year out of hospital
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By the end of the first year, your immune system will probably have returned to normal, and the bone marrow will be producing blood cells normally. For some people this may take a little longer.
You should continue to be careful, and you will still have regular check-ups, which may include a bone marrow biopsy. You may get infections, such as shingles and chest infections, and if so, you may need to go into hospital for treatment. Very occasionally, some people still need blood transfusions.
Often your drugs will be continued to reduce the risks of infection and GvHD. You may be advised to carry a medical alert card in case of an accident, as any blood used for a transfusion will need to be irradiated.
When you only need occasional blood tests or infusions, your central line will be taken out.
It’s very important to keep in close contact with your doctors and to discuss any problems or worries with them. This can be a difficult time psychologically, both because you’re starting to return to your normal activities and because you’re still unsure about your health in the longer term.
You should gradually start to recover your weight and strength, and you may be able to return to work during this time.
You’ll need to have regular check-ups to ensure that you remain well and that there’s no evidence that your cancer or leukaemia has come back. Usually these will take the form of a medical examination, a blood test and possibly x-rays. Eventually, if you stay well, these will become yearly visits. You should be able to return to a normal way of life without restrictions.
These check-ups can be unsettling, as you will probably be anxious about whether the treatment has worked. It often makes it easier if you take a relative or friend along for support. The check-ups are a good opportunity to discuss with your doctor any worries or problems you may have.
You might find our section on life after cancer helpful.