Table of Contents
Going Home After Your Allogeneic Stem Cell Transplant
The information provided will help patients get ready for discharge after an allogeneic stem cell transplant.
|Discharge Instructions Infection GVHD Resuming Activities Follow-Up Care FAQs|
Instructions Before Discharge
Before leaving the hospital, you and your caregivers must prepare for this transition. You will need to follow precautions to keep healthy and prevent infection. Work together with our transplant team to arrange for follow-up care.
This phase of recovery extends over a period of one year (or longer) after a transplant. It is important to note that even though blood counts are rising to a normal range, the immune system is still immature. You are required to continue medications and follow precautions to avoid infection and keep healthy.
Leaving The Hospital
Feelings of anxiety and concern as your discharge date approaches are normal. Once discharged, you and your family will need to manage your care. It may take time to feel confident and comfortable doing this, and it may also take time to get used to living at home again. Aim to stay calm and confident.
Recovery after transplant will be gradual. You might not feel the way you did before the transplant for some time. Some changes to expect are feeling tired and weak, having a smaller appetite, and noticing differences in the way things smell and taste.
It may also take time for you to regain strength and resume the activities you enjoyed before the illness and transplant.
How To Prevent Infection At Home
The immune system usually takes between 12 to 18 months to recover from the transplant. During this time, there is a higher risk of infection. Your blood cell counts will be checked by our transplant team to determine how well your immune system is working.
- Wash your hands frequently with soap and water.
- Avoid people who are sick or have recently recovered.
- Wear a mask while in public if our transplant team recommends it.
Inform our transplant team if you have any of the following symptoms as they can be a sign of infection:
- A fever of 38.0 °C or higher. (Do not take paracetamol before checking with the transplant team. Daily temperature checks are not required but check frequently if you feel unwell.)
- Flushed (red, warm) skin
- Sweating or shaking chills
- Runny nose, sneezing, coughing
- Shortness of breath, or discomfort in the chest
- Redness, swelling or pain in the throat, eyes, ears, skin, joints, or abdomen.
- Blurred vision or other changes in eyesight
- Vomiting or diarrhoea
- Burning sensation when you pass urine and/or frequent urination.
- Burning and painful irritation of the rectum
- A rash
- Small blisters (similar to cold sores) around the mouth or on any other part of your body
You are more susceptible to viruses until your immune system begins functioning normally. One particular virus is varicella that causes chickenpox and shingles. If you are exposed to chickenpox or shingles, call our transplant doctor or nurse right away as you will need assessment, and may require treatment.
Revaccination of childhood vaccines will start once the immune system has recovered. Revaccination usually begins about one year after a transplant. However, the transplant team will decide when it is best.
While recovering from a transplant, it is essential to keep clean as this will help prevent infections. Follow the guidelines below.
- Shower or bathe every day.
- Use a mild soap. Do not use a deodorant soap as they can be very drying to the skin.
- Clean and wash the underarms and groin area.
- Use a personal towel. Do not share with family members.
- Avoid using very hot water if your skin is dry. Apply baby oil or a skin moisturiser after showering while the skin is still damp. Pat skin dry with a towel and be gentle. Do not use lotions containing alcohol as they will make the skin drier.
- Hair usually starts to grow back about three months after the transplant. The hair that grows back may be of a different texture.
- Contact lenses can be worn but clean them thoroughly before use. Never reuse a cleaning solution. Check expiry dates and throw out cleaning solutions if they have expired. Make use of moisturising drops if your eyes are dry.
- Nail regrowth will happen gradually, three to four months after the transplant. Stay away from manicures or pedicures in a nail salon while your immune system is still recovering.
- Do not get any new piercings, tattoos, or body modifications done after a transplant.
Maintain the same mouth care routine that was followed while in the hospital. Brush your teeth with an ultra-soft toothbrush. Check with the doctor or dentist when it is best to start flossing and brushing teeth with a regular toothbrush.
Ensure proper hygiene if you wear dentures. Soak dentures daily in any type of denture cleaner. Use the product as directed. Then, rinse dentures thoroughly with tap water. It may be necessary for dentures to need refitting after a transplant.
If any of your prescribed medications are mouth rinses, remove dentures before rinsing or swishing with the medicine. Removing dentures beforehand enables the medication to work better and keep the mouth free from infection. If you experience any pain or discomfort in your mouth, inform our nurse or doctor.
Mouth dryness is to be expected for three to four months (or longer) after a transplant. Stay away from commercial, alcohol-based mouthwashes or hydrogen peroxide. Both of these ingredients will further dry and irritate the mouth. Instead, make a mild salt-water rinse for use at home. You can do this by mixing ½ teaspoon of salt and ½ teaspoon of baking soda in a 240ml glass of water. Sugarless sweets and lozenges may also provide some relief. Sucking on these aids in keeping saliva circulating and therefore relieving mouth dryness.
It is just as important to keep your tunnelled catheter clean at home. If you leave the hospital with a tunnelled catheter, a nurse will teach you how to care for it at home.
Call our transplant team immediately if:
- There is redness, swelling, or drainage at the area where the catheter exits the body
- The connector falls off
- You have a fever of 38° C or higher or chills
- There is a break or leak in the catheter
After your stem cell transplant, your skin will be more sensitive and may burn more easily. Some of your prescribed medications may add to this. If you are in the sun, opt for a sunscreen that has an SPF of at least 30 and reapply frequently. If you intend to be in direct sunlight for 20 minutes or longer, cover your skin with cotton clothing and wear a protective hat.
Post stem cell transplant, you will need to keep the home dust and dirt free. We have provided some guidelines that you can follow below:
- Stay away from renovation or construction until our transplant team informs you otherwise.
- Do not use a humidifier. Bacteria and mould grow easily in it, and they are then released into the air.
- Avoid dusting or vacuuming for the first three months after a transplant. It is okay to perform simple chores like cooking, washing dishes, or ironing if you feel strong enough.
- Keep your bathroom sterile. Pay attention to the sink, bathtub, shower and toilet areas. Use a disinfectant regularly. A family member or caretaker should help you with these tasks.
- Wash towels at least twice a week and bed linens once a week. You should use only personal towels and washcloths. Do not share them with other members of the household.
- Plants at home are allowed, but you must not touch the soil for the first few months after your stem cell transplant.
Animals can carry diseases. They put patients at higher risk for infection while their immune system is recovering. Having pets and touching them is allowed. However, you need to avoid close contact. Do not carry any animals or come in contact with the animal’s saliva or faeces. You should take extra precautions to protect yourself from accidental bites or scratches.
If you own a cat or dog, follow these additional guidelines:
- Keep pets up-to-date with immunisations and booster shots.
- You should not clean litter boxes or clean up after cats and dogs.
- Pets should not be allowed on your bed.
- You should avoid close contact with animals on a farm or in a petting zoo.
Physical contact with one’s immediate family is fine. However, avoid close contact with someone who is exhibiting symptoms of being sick. You may have visitors, but keep them to small groups.
Do not visit anyone who has:
- A cold or flu
- Chickenpox or recent exposure to chickenpox
- Herpes or has recent exposure to herpes
- Shingles or recent exposure to shingles
- Had exposure to any other type of virus or infection
- Recently been vaccinated with a live virus such as varicella or rotavirus. Should someone in your household need one, they should inform their doctor that they live with an immunosuppressed patient.
Inform our doctor if you or any other member of the household is exposed to chickenpox, shingles, measles, or rubella (German measles).
Walking is an efficient way to regain strength and endurance after a transplant. However, when taking walks outside of the home, avoid dirty areas and construction sites.
During the first few months post stem cell transplant, avoid these areas when they are busy:
- Supermarkets or shopping malls
- Public transportation. Avoid taking public transportation (trains or buses) for at least three months after a transplant. Wearing a mask when travelling by these means is highly recommended.
Visit these places during off-peak hours when there are fewer people.
Graft Versus Host Disease (GVHD)
GVHD occurs when the donor’s immune cells (T cells) attack and damage the body’s organs. GVHD may develop when the new stem cells start to engraft. A close match of HLA or tissue type between patient and donor helps lower this risk but does not eliminate it.
GVHD exists as either acute (early) and chronic (late and longer-lasting).
Typically, acute GVHD develops within the first 100 days post stem cell transplant, although it can happen later on.
Symptoms of acute GVHD may include:
- A skin rash that appears either on specific parts of the body or all over
- Jaundice (yellow skin and eye colour) and an enlarged liver
- Abnormal liver blood tests
- Loss of appetite
- Nausea and vomiting
- Mild to severe diarrhoea
Chronic GVHD usually develops after 100 days. However, it rarely develops before the first three months post stem cell transplant.
Symptoms of chronic GVHD include:
- A dark skin rash or dry and thickened, hardened skin
- Loss of appetite
- Weight loss
- Dry mouth
- Tightness and discomfort in the mouth
- Dry eyes
The symptoms may be mild to severe. You may develop either one type of GVHD or both acute and chronic GVHD. You may or may not exhibit symptoms between the time you develop acute and chronic GVHD. Our doctors will discuss treatment with you should you develop any symptoms of GVHD.
Resuming Your Activities Post Stem Cell Transplant
The period after a transplant is an essential time for cell recovery and regrowth. The cells in the mouth, stomach, muscles, hair, and intestines will regrow. Regrowth and recovery require calories and energy. You may feel more tired than usual. This fatigue and weakness are normal, but your strength should gradually return.
The time taken to recover after a transplant varies, most people find that it takes about three months. However, this differs from person to person. You may feel well enough to resume your normal level of activity.
After a transplant, many people need time to regain and rebuild their strength. You may find it helpful to follow a regular exercise plan. You should begin with easier forms of exercise. As your strength builds, ask our team how to increase the intensity of your exercise.
Returning to school or work
Most patients can resume school or work approximately six months after their transplant. However, this varies between individuals. Some feel ready to return right away while others are worried after being away for so long.
Transitioning back to one’s old lifestyle can be difficult. Some patients are concerned about changes in their appearance, such as hair loss. Others have difficulties with their attention and concentration. Many individuals are unable to keep up with their pace from before the transplant. Our transplant team is here to talk with you about going back to school or work, and help you find ways to make the transition easier.
If you plan to travel by plane or go overseas during the first two years after a transplant, discuss this with our transplant team.
Ask the doctor about resuming sexual activity as intimate behaviour can be a risk for infection. Be intimate through cuddling, gentle touching, and kissing skin during this time
- After a transplant, female patients may have:
- Fewer menstrual periods
- No menstrual periods
- Vaginal dryness and discomfort. Vaginal moisturisers may help, but discuss this with a doctor before using any of these products.
Some men experience decreased sexual desire post stem cell transplant. A lowered sex drive may impact relationships, but as you regain strength and increase your activities, you should be able to see changes. Men sometimes experience erectile dysfunction (ED) after a transplant. Talk with a doctor as medication can help.
Drinking Alcohol and Using Tobacco
Organs need time to recover after a transplant, and alcohol can harm your liver. Effects may be worsened if you are taking medications that can affect the liver. Do not drink alcohol until our doctor says it is safe.
You should also avoid smoking as this can lead to a serious lung infection and increase the risk of a second cancer.
Follow-up visits will be scheduled before discharge. Typically, you will be seen at least one to two times a week for the first two to three months after your transplant. After this, your appointments will be spaced further apart if your recovery stays on track.
If you have been taking immunosuppressive medications, you should not take the morning dose on the days of a follow-up visit unless our doctor or nurse gives other instructions. Bring the dose to the appointment. This is because your blood will be tested at the appointment to determine how much of the drug is in your blood. After your blood has been taken, you can take your immunosuppressive medications.
During visits to the clinic for follow-up visits, bring all the prescribed medications. You may also find it helpful to compile and bring a list of questions that have come up since the last visit.
During these appointments, blood tests will be done to check blood counts, electrolyte levels, along with liver and kidney function. Additionally, bone marrow aspirations will be done every few months. In the first year post stem cell transplant, they are usually done at 1, 2, 3, 6, 12, months. Bone marrow aspirations may be done more often or for an extended period post stem cell transplant if needed. Bone marrow tests help determine the health and growth of the marrow and to assess your response to the transplant.
You may require intravenous antibiotics and blood transfusions. Our doctor or nurse will inform you as to how long and how often you will need them. Should you need them, these appointments will typically be scheduled at the same time as follow-up visits..
Once you have recovered from the transplant, remember to go to a local dentist for regular checks. If extensive dental work is needed, ask the transplant doctor what is advised. They will be able to inform you when it is safe to resume all dental care with a dentist.
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The information on the Centre For Clinical Haematology website is intended for educational use. It should not be considered or used as a substitute for medical advice, diagnosis or treatment from a qualified health professional.
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