Keeping track of recovery
The regularity of patient’s appointments depends on how long it has been since the stem cell transplant and how the patient is feeling. As the patient recovers, the frequency of appointments becomes less, and eventually a yearly check-up might be all that is required.
Any questions in between appointments can either be addressed to the physician or our team.
First three months
During the first three months, the patients have regular appointments once or twice a week. During these appointments, the doctor will:
- Review the patient’s progress, and find out how have they have been feeling
- Examine the patient to check for signs of infection and graft versus host disease (GvHD)
- Review and adjust the medication
- Flush and clean patient’s central line
The patient will also have regular blood tests that will measure blood count, liver and kidney function, and check for viruses.
Appointments after three months
The patient may have standard appointments every two weeks until about a year after their transplant. This varies from hospital to hospital, and will depend on how the recovery is going, but the patient might have to undergo:
- A bone marrow test
- Scans of body, called CT or PET scans
Graft vs host disease (GvHD)
When the patient has undergone a stem cell transplant, there are still small differences between their new developing immune system and other cells in their body. As a result, their growing immune system may harm some of the cells in their own body because it sees them as ‘different’. This is called Graft versus Host Disease (GvHD).
Occurrence of GvHD in a limited form may be a good thing because it means that the new immune system is working and is likely to be attacking any remaining disease cells. This can help stop the disease from coming back. But too much GvHD can cause unwanted complications and side effects.
Acute versus Chronic GvHD
In the early weeks and months after transplant, the doctors call GvHD ‘acute GvHD.’ The first sign of acute GvHD could be a rash, or an upset stomach with nausea, vomiting or diarrhoea, or it could affect liver tests, sometimes causing jaundice (yellow discoloration to skin).
‘Chronic’ GvHD may happen later on around 100 days after transplant. GvHD can then affect different parts of the body.
How will doctors monitor GvHD?
The doctors will closely monitor the patients for signs of GvHD with regular blood tests and physical examinations. If the patient has new symptoms, they might have to undergo more tests, or be referred to a specialist.
The patient will be given immunosuppressants – medicine to suppress the immune system and prevent GvHD. A common medication used is Ciclosporin (or Cyclosporin).
Diet after the transplant
During recovery the patient deals with side effects that can affect eating and drinking. Focusing on diet is an important part of dealing with these side effects.
Tips for eating and drinking
During a stem cell transplant and the recovery stage, the patient needs more nutrients to rebuild and repair cells and tissue, and to develop new ones.
The patient might also need to make some changes to their diet during their recovery, depending on the symptoms. We’ve suggested some basic tips, but it is recommended to speak to a dietitian for more detailed advice. Any guidelines given by the hospital should be followed when choosing food for the patient.
As the patient’s immune system is recovering after a transplant, they are more vulnerable to infections, so it is recommended to steer clear of foods that contain small amounts of bacteria, fungi and continue following food safety advice in the early stages of recovery.
Keeping active after the transplant
After the transplant, keeping active can help the patient physically and emotionally and is particularly useful in helping to reduce side effects like fatigue, and problems with joints and muscles.
Where should I start?
It’s normally OK to start doing some exercises while still in hospital or recovering at home, but it is better to check with the doctor or physiotherapist. Everyone would have had different levels of fitness before the transplant, but it’s normally a good idea to start.
Break it down into chunks, aim for 10-20 minutes a day, but spread it out into bursts of 3-5 minutes.
When isn’t it safe to exercise?
If a patient is recovering well, it’s generally safe to do light or moderate exercise. If a patient is feeling unwell or still needs to go to hospital for problems related to transplant, or there are other health problems, it is recommended to speak to a physiotherapist about what’s safe to do.
Examples of exercises that you can be taken up post-transplant
Pick an exercise and repeat it at a steady pace for one minute, a few times a day.
- Start by lying on your back
Ankle Bends – Point toes up to the ceiling, then straighten the ankles and point the toes away from the body. Keep knees straight to stretch the calf muscles.
Leg Raises – Lift up one knee so the foot is flat on the bed. Keep the other leg straight, toes pointing towards the ceiling, and lift it up about six inches, hold for five seconds, and lower it down. Repeat on both sides.
- Start by sitting in a chair or bed
Leg Strengthening – Starting with both feet flat on the floor, straighten one knee slowly and smoothly to lift your foot up, then lower it back down. Repeat on both sides.
Triceps Lifts – Hold a bottle above the head with arms straight. Bend the elbow and slowly lower the bottle towards the shoulder, behind the head, keeping the elbow high. Then straighten the arm again. Repeat on both sides.
Getting in touch with the donor
What are the rules?
After a transplant, some people really want to get in touch with their donor. Others prefer not to, and that’s OK, too.
The patient and their family cannot have any correspondence with the donor before the transplant. But they can know the age and gender of the donor – and in some cases, which country they’re from. This varies between transplant centers, so it is recommended to speak to the doctor’s team to find out more.
As the patient, if it’s something you want, it’s up to you to suggest this. Speak to your transplant team about the next steps. Direct contact usually follows a period of anonymous contact. If you’re under 18, a parent or legal guardian can contact your donor on your behalf.
Eventually they shall. But for privacy concerns a gap period of one year is required before making headway towards the patient-donor meeting.