Transitioning from Inpatient to Outpatient Post Transplant

What to Expect During Follow Up

Close monitoring and observation following a transplant are usually required. Part of this monitoring involves regular blood tests as well as medical reviews. Several other tests will be performed to assess the outcome of your transplant. The frequency of these appointments depends on the time since your transplant and how you are managing and progressing..

Initially, you will see the doctor twice a week and have blood tests performed each time. If your doctor is concerned about your progress, you may need to increase the frequency of your visits for additional monitoring or treatment..

Frequent and repetitive visits to the hospital for tests can become tiresome, especially during the first few weeks. The frequency of your visits will be continually reviewed and kept to a minimum where possible. Should other problems develop, you may need to see other specialists. Regular and continuous monitoring allows doctors to identify and treat any new issues promptly.

Transfusions

Some patients continue to need blood and platelet transfusions after they go home. Irradiated blood products are necessary for recipients of donor transplants for at least the first year post-transplant. Irradiated blood is blood that has been treated with radiation (by x-rays or other forms of radioactivity) to prevent Transfusion-Associated Graft-versus-Host Disease (TA-GvHD).

Packing Your Hospital Bag

Keep in mind that readmission to the hospital after a transplant is not an uncommon occurrence. There are various reasons for readmission, and they range from being straightforward to more complex. The length of your stay during readmission depends on the problem being treated..

Some common reasons for readmission are:

Infections

The types of infections mentioned below are a common reason for readmission following a transplant.

Viral Infections
Cytomegalovirus (CMV) is a virus detected by blood tests and can be present with, or without, any symptoms. CMV can cause infection almost anywhere in your body. When your immune system is weak, exposure to or reactivation of CMV can be severe and even life-threatening in some cases.

Fortunately, significant progress has been made in preventing CMV infections, especially in patients who carry or are at risk of reactivating the virus. Here at CFCH, we carry out weekly blood tests for CMV as this virus can be detected at minimal levels. Early treatment of the CMV virus while it is still at low blood levels usually allows for the clearance of the infection without any progression to organ involvement.

Most CMV reactivations happen during the first few months after the transplant; however, it can happen later on. Patients may experience repeated reactivations and may require treatment on and off for several months.

Some viruses can present as a common cold or flu and cause inflammation of the airways or lead to pneumonia. It is essential to contact the clinic if you develop any of these symptoms. We will inform you if you need to have any tests done.

A standard test is a nose and throat swab that is taken to detect the presence of respiratory viruses. These viruses may cause a runny nose or sore throat. Treatment for these viruses vary and depend on which, if any, are detected.

BK virus, which usually causes cystitis or the inflammation of the wall of the bladder, can be problematic after transplant. This inflammation can result in painful, frequent urination, and blood in the urine. Urine testing in a laboratory is used to identify this virus. If the symptoms and discomfort remain or worsen, our doctors request that you see another specialist.

Bacterial infections
Bacterial infections are a common reason for readmission after a transplant. One of the most common bacterial infections can come from the Hickman line or PICC lines. These infections are often associated with chills or fever.

Bacterial infections can very quickly make you very unwell. It is vital that you contact our transplant team immediately if you have a temperature above 38˚C, or if you feel ill even without a temperature. Your body’s ability to develop a temperature may be compromised by drugs such as steroids or paracetamol.

Fungal infections
Fungal infections may arise when blood counts are low following a transplant. These infections usually occur in the chest or sinuses but may be present elsewhere. Fungal infections cannot be adequately diagnosed on a standard X-ray.

If our doctor suspects a fungal infection, they might arrange for you to have a CT scan. Fungal infections can appear later even after the blood counts have recovered in some patients.

Most patients are given preventative medication after being discharged to reduce the risk of fungal infections. Typically, patients will stop this medication a few months after the transplant. Patients who have GVHD, or need to continue immuno-suppression, remain at risk of fungal infections. They may need to continue with the medication for longer.

Kidney Problems

After your transplant, the function of your kidneys will be monitored. A blood test and weight check will be done at least once a week. Your kidneys perform several vital jobs such as regulating calcium, water and other necessary substances while removing waste from the body.

There are several reasons why the function of the kidneys can become abnormal. It can be related to your medication, an infection or dehydration. Mild kidney problems are common, but you may be admitted for treatment until your blood levels become healthy again.

Occasionally, the kidneys can become damaged and may not work properly, and you may need additional visits to the hospital for monitoring.

Liver Problems

The function of the liver needs to be monitored after your transplant. There are several reasons why liver function might become abnormal such as your medication, an infection, graft versus host disease (GVHD) or veno-occlusive disease (VOD).

VOD is a disease where the blood flow through the small veins of the liver is partially blocked. VOD causes symptoms such as jaundice (yellowing of skin or eyes), swelling or distension of the abdomen and fluid accumulation, and it can be life-threatening.

VOD usually occurs during the first few weeks after the transplant. In some cases, it can happen later and is more common in patients who have had very high doses of chemotherapy for their transplant. While typically mild, VOD can be a severe problem, and treatment seeks to minimise its effects.

Treatments for VOD are available and have improved the outcome for patients suffering from it, making the life-threatening disease rarer than it used to be. Recovery is aided by the liver’s amazing ability to recover and regenerate from the effects of such diseases.

Nausea and Vomiting

It is not unusual for nausea with or without vomiting to persist for several weeks or months after the transplant. There are several possible causes for this which might include infections and GVHD. As nausea can affect your appetite and diet, it is essential to discuss this with our team so that they investigate and treat appropriately.

Diarrhoea

Diarrhoea can occur after the transplant and when persistent, it can cause significant weight loss and malnutrition. There are several potential causes, and the diarrhoea may be caused by more than one problem simultaneously. You should let our team know if you have new and persistent diarrhoea so that they can take appropriate and prompt action.

Bleeding

You may still need to have platelet transfusions after going home. You should contact our transplant team if you develop any new bruising, bleeding (e.g. blood in your urine or stools), or a persistent nosebleed.

Although bleeding can occur later on after your transplant, this is generally not considered to be normal and must be reported to our team immediately so that they can investigate the cause. There can be many possible reasons for bleeding.

The bleeding does not mean that the transplant has not worked, and it is usually necessary to make many adjustments to your treatment as you progress through your recovery.

Thrombotic thrombocytopenic purpura (TTP)
Thrombotic thrombocytopenic purpura (TTP) is a rare condition which can happen after a transplant. Small clots develop within the circulation and cause platelets to be used up, resulting in a low platelet count or thrombocytopenia.

The exact cause of TTP is uncertain; however, it is thought to involve a protein in the blood called von Willebrand factor (vWF) which malfunctions and becomes sticky. The platelets may clump together, particularly in the small vessels supplying the brain and the kidney.

Some drugs, such as cyclosporin, are linked to TTP, although very few patients who take this drug develop this problem. TTP is also associated with certain infections and total body irradiation (TBI) treatment. The symptoms related to TTP include fever, headaches as well as diarrhoea and easy bruising. High blood pressure may also develop if the vessels of the kidney become affected. Our doctors may review all your medications and choose to stop cyclosporin.

Poor Nutrition or Weight Loss

Patients who have undergone a bone marrow transplant may require admission to the hospital for poor nutrition and appetite in several situations, including:

Severe malnourishment: Patients who have undergone a bone marrow transplant are at high risk of malnutrition due to the treatment’s side effects, such as vomiting, diarrhea, and mouth sores. If a patient’s malnourishment is severe and not improving with oral intake, admission to the hospital may be necessary to receive intravenous nutrition.
Infection: Infections are a common complication after a bone marrow transplant, and they can significantly affect a patient’s appetite and ability to consume food. If a patient has a severe infection and is unable to eat, hospital admission may be necessary to receive antibiotics and supportive care.
Graft-versus-host disease (GVHD): GVHD is a common complication of bone marrow transplant, where the transplanted cells attack the patient’s own tissues, including the gastrointestinal tract, causing severe inflammation and damage. This can lead to significant malnutrition and a decrease in appetite, requiring hospital admission for close monitoring and treatment.
Other complications: Other complications that can affect a patient’s nutrition and appetite after a bone marrow transplant include gastrointestinal bleeding, dehydration, and electrolyte imbalances. If any of these occur and are severe, hospital admission may be necessary for appropriate management.

Graft versus host disease (GVHD)

Patients who undergo bone marrow transplant may develop Graft versus host disease (GVHD), which is a complication that occurs when the transplanted cells recognise the recipient’s tissues as foreign and attack them. The timing of when a patient may need to be admitted for GVHD depends on several factors, including the type of transplant, the degree of HLA (human leukocyte antigen) matching between the donor and recipient, and the patient’s medical condition.

Acute GVHD typically occurs within the first 100 days after transplantation, with the highest risk being in the first 30 days. The symptoms can range from mild skin rash and diarrhoea to severe symptoms such as liver dysfunction and gastrointestinal bleeding. Patients who develop acute GVHD may require hospitalisation for treatment with immunosuppressive drugs and other supportive care.

Chronic GVHD can occur several months to years after transplantation, and symptoms may include skin changes, mouth ulcers, joint pain, and lung problems. The treatment for chronic GVHD may involve immunosuppressive medications, and patients may require hospitalisation if the symptoms are severe or if they develop complications such as infections.

Hickman/PICC line removal

The Hickman/PICC line is a potential source of infection at any stage of your treatment. Your Hickman/PICC line will usually be removed once it is no longer required, or if it becomes infected after the transplant. Removing the line is a simple procedure and is generally done in the clinic..

Medication

You will need to continue with your prescribed medicines, including creams, lotions and mouthwashes, until our team advises otherwise. You will need to continue taking some of the medication for at least a year. Certain drugs, such as antifungal and antiviral drugs, which help to protect you from infections, need to be taken for even longer.

You may still need to continue taking immunosuppressive drugs such as tacrolimus. You must remember that these drugs should be taken regularly and as instructed. Their levels need to be monitored so that you benefit with minimal side effects. If the drug level is too low, the drug will not work properly. If the level is too high, it can damage the kidneys or cause more infections.

Remember that although you are being sent home from the hospital, you are still on the road to recovery. Our transplant team will be with you through this journey to support you and help you manage your recovery.

FAQs

What is the recovery period for a bone marrow transplant?

The first stage of recovery after a bone marrow transplant typically takes 4 to 6 weeks. This is the period in which our transplant team will monitor you to see if engraftment has occurred.

Typically, patients remain in the hospital until their blood counts stabilise and the patient is fit and independent without any infective complications.

Full recovery after a bone marrow transplant can take between 6 months to a year.

How long are you in the hospital for a bone marrow transplant?

You will be expected to remain in the hospital for between 3 to 4 weeks following a bone marrow transplant, depending on the type of transplant you received.

What are the possible complications of a stem cell transplant?

There are a number of complications that can occur after a stem cell transplant. These include both short term and long term complications.

Patients may experience short term complications such as mouth and throat pain, vomiting or nausea, infection, or graft-versus-host-disease (GVHD). Longer-term complications include disease relapse, GVHD, cardiac and hormonal changes, as well as secondary cancers.

Our transplant team will work closely with you through the different phases of your transplant to monitor, prevent and manage any such complications.

Can stem cell transplant patients have visitors?

Following a stem cell transplant, patients are allowed to have contact with people in their immediate family at home. However, patients should take extra care to avoid contact with someone who shows symptoms of being sick or having a cold. Take precautions to wear a mask if you need to be in the same vicinity as someone who is ill. Visitors are also allowed, but they should visit in small groups and avoid visiting if they are sick, have recently received a vaccine with a live virus, or have recently been exposed to chickenpox, herpes, and shingles.

*At present, due to restrictions imposed because of the COVID pandemic, do note that it may not be possible for the patient to have hospital visitors while in-patient for the transplantation. Do contact our team directly for clarification as the situation remains fluid.

When can you go back to work after a stem cell transplant?

While the time taken for a patient to return to work after a stem cell transplant varies, the earliest is between 2 to 4 months following their transplant. While the idea of being away from work for such a long period before returning may be worrying, you may want to start slow, such as going in a few times a week.

It is normal to find it challenging to match the pace of work you were comfortable at before your stem cell transplant. Our transplant team is available to help you make the transition easier and help you manage the side effects experienced during your recovery, if any.

What are the long-term side effects of a bone marrow transplant?

Long-term side effects following a bone marrow transplant vary depending on several factors. For example, the type of transplant, pre-transplant chemotherapy, the patient’s age and health, and whether graft-versus-host-disease (GVHD) is present may all affect the potential side effects experienced by a patient.

Some possible long-term side effects include organ damage, reduced fertility, relapse, second cancer, cataracts, and hormonal changes.

Can you live a normal life after a stem cell transplant?

Yes, it is possible to live a full and normal life following a stem cell transplant. While it will take time for you to regain your regular level of activity, many patients start to feel stronger between 2 months to a year after their stem cell transplant. However, patients should note that this is still the recovery period, and fatigue is to be expected.