Life after a transplant for non Hodgkin lymphoma
This page tells you about coping after a transplant for non Hodgkin lymphoma. You can find the following information
Life after a transplant
It takes a long time to get over intensive treatment such as a bone marrow or stem cell transplant. You may have to go back into hospital once or twice. And it may be a year before you really feel you are on the road to recovery.
For the first few months you will need to take special precautions to avoid infection. This means avoiding foods that might cause food poisoning or carry infections. You will also be advised to avoid crowded places, and not to be with people who have come into contact with infections like chicken pox.
School, college or work
You will not be able to go back to normal daily activity until your white cell count is nearing normal. It is a good idea to start back part time. Talk to your employer, teacher or tutor about this. You may also want to think about whether you would like them to talk to your colleagues or other students about your illness.
Exercise, travel and your sex life
Exercise will help you get your strength back. But while your platelet count is still low, you have to be careful about getting knocks. Once all your blood counts are getting back to normal you can do just about anything. If you want to travel abroad, talk to your doctors. You cannot fly if your platelets are too low. A transplant does not physically stop you from having your normal sex life. But you may find that your sex drive is low for a while.
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It takes a long time to get over intensive treatment such as a bone marrow or stem cell transplant. It is not unusual to have to go back into hospital once or twice. And it may be a year before you really feel you are on the road to recovery. Feeling tired and fatigued is normal for the first few months at least.
You will still have your central line in until you no longer need platelet or blood transfusions. You will probably get at least one infection that means you have to be treated at the hospital.
You will probably have lost weight during your treatment but gradually you will put it back on and start to feel stronger. To avoid infection for the first few months
- Eat only freshly cooked food
- Avoid undercooked eggs
- Avoid soft cheeses and creamy cakes and puddings
- Wash salads and fruit very thoroughly
- Avoid takeaways and fast food restaurants
- Drink alcohol in moderation
To keep the risk of infection as low as possible
- Avoid crowded cinemas, restaurants and public transport
- Avoid anyone who has come into contact with an infectious disease such as chicken pox or measles
Once your white cell count has recovered enough, you will be able to go just about anywhere. This will take roughly 3 to 6 months, but you must check with your doctor to be sure.
You will not be able to get back to your usual daily life until your white cell count is nearing normal. It is a good idea to go back to work or school part time at first, until you have got some of your strength back. Talk to your employer, teacher or tutor about this. You may also want to think about whether you would like them to talk to your colleagues or other students about your illness and treatment. Or whether you would like to do this yourself.
Exercise will help you to get your strength back. But while your platelet count is still low, you have to be careful about getting any knocks. Choose something gentle like walking. When your white cell count has improved, you can go swimming.
Once all your blood counts are getting back to normal you can do just about whatever you like. Talk to your doctor or nurse to get advice about this.
If you want to go abroad, talk to your doctors. They may want to contact a treatment centre near to where you are going and let them know you are in the area, just in case you have any problems. You cannot fly if your platelets are too low.
For a year after your transplant you should not sit in the sun because it could cause a skin reaction. Or if you have graft versus host disease (GVHD) of the skin, it could make it worse. Wear long sleeves, a hat and trousers in the sun. And use a high factor sun cream.
After the first year you can go where you like. But you should avoid some types of vaccination. There is more about this in the vaccines section of the travelling abroad page in the coping practically section.
Whenever you go away from the hospital that treated you, it is helpful to carry a doctor's letter saying what you have had done and giving the phone number of your medical team for emergencies.
To start with, you are likely to have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But they will not want to cover you for the cost of medical treatment abroad. Or for cancellations by you. If a company will insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel.
Remember that you can travel without insurance. But you are taking a risk. If you travel in Europe, get a European Health Insurance Card (EHIC). You can get an application from your local post office. You can find information about applying for an EHIC on the NHS Choices website. This ensures you are covered for medical treatment within the European Community. But you will not be covered if, for example, you need to be flown home. Or for the cost of extras in health care such as trips by ambulance.
A transplant does not physically stop you from having a normal sex life. But you may find that your sex drive is low for a while. This may be due to
- The treatment
- Lack of strength and energy
- Worry about the future
- Feeling upset about losing your fertility
- Lack of confidence about changes in your appearance that transplant causes (hair and weight loss for example)
- Getting used to changes in levels of sex hormones
Some of these take time to get used to. Some will get better on their own, for example your hair will grow back and you will put on weight. The most important thing is to give yourself time. And, if you have a partner, keep talking about how you are both feeling. Look at the sex and fertility in NHL section for more detailed information about this.
If you would like more information about life after treatment, contact our cancer information nurses. They would be happy to help. Or contact one of the organisations on the NHL organisations page. They often have free factsheets and booklets they can send to you. We also have an NHL reading list.
If you want to find people to share experiences with online, you could use CancerChat, our online forum. Or go through MyWavelength. This is a free service that aims to put people with similar medical conditions in touch with each other.
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