Drawing of a patient and caregiver having coffee. They're discussing different types of support.

Support and resources

PTLD is a rare disease. It can be hard to find support or resources that are relevant or are shareable with others. This page has some starting points, so you don’t have to go through this alone.

Types of support to consider

Drawing of a diverse group of people who could be part of a support network.

Each person's situation and needs are different, and may change over time. It can be hard to ask for help, but there are people who want to help.

Sources of help may include:

  • your transplant team
  • family and friends
  • local or online communities
  • nonprofit groups
  • local support groups
  • social workers
  • therapists
  • insurance programs
  • employee benefit programs
  • drug manufacturers

Educational support

Your transplant team is the best source of information. They can give you answers specific to you because they know about your transplant, immunosuppressants, and PTLD.

Some nonprofit groups have an information hotline with medical experts. They can also help find answers to your questions.

Financial support

Ask your transplant team about any costs you may have as part of treatment. You can also ask what to expect and what your insurance may cover.

Costs may include:

  • medical tests and imaging
  • doctor or check-up appointments
  • medical bills
  • getting to and from treatment (e.g., gas, parking, travel fare)
  • a place to stay or meals (if away from home)
  • family and/or pet care (if away from home)
  • lowered or no income (if away from work)

Your transplant team may also tell you about other forms of support, like programs, financial grants, coupons, or vouchers.

Practical support

Practical support means help for things in your day-to-day, such as:

  • grabbing groceries
  • cooking
  • cleaning
  • rides to and from appointments
  • chores
  • checking mail
  • listening and taking notes at appointments
  • looking out for symptoms and side effects

Getting help for some of these tasks can help you stay focused on treatment and recovery.

Examples of people who might be able to provide support include:

  • family
  • friends
  • people in your community or neighborhood
  • hospital or nonprofit group staff and volunteers
  • hired care workers

General well-being

A new diagnosis can stir up a lot of emotions and stress. It's normal to want help dealing with new information and situations.

Let your transplant team know how you're feeling — physically, mentally, and emotionally. They may recommend seeing a specialist based on your needs, e.g.,:

  • physiotherapist or physical rehabilitation therapist
  • occupational therapist
  • mental health professional
  • registered dietician or nutritionist

Other sources of support may include:

  • support groups where patients can share personal experiences
  • nonprofit group resources for patients on immunosuppressants

For caregivers

Caregivers may also need any of the supports above. If you are a caregiver, don't forget to acknowledge your own feelings and reach out for help. Find time and space to rest and recover.

Questions you can ask

  • Is there any support for me locally?
  • Who can I talk to if I'm struggling?
  • Who can help me find support and resources?
  • How might I talk to others about my diagnosis?
  • What costs can I expect?
  • What types of financial aid am I eligible for?

Patient support and resources

The list of links below is a starting point. It includes organizations that help patients with rare diseases, cancer, and transplants. Some organizations offer more than one type of support.

Caregiver support and resources

The list of links below is a starting point. It includes organizations that help caregivers of patients with rare diseases, cancer, and transplants. Some organizations offer more than one type of support.

Downloads

What is PTLD?

A 4-page introduction to PTLD. It can be printed and shared with others.

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Glossary

Blood stem cell transplant
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Epstein‑Barr virus (EBV)
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Epstein‑Barr virus (EBV) active state
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Epstein‑Barr virus (EBV) dormant state
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Graft-versus-host disease (GvHD)
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Immunophenotyping
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Lymphocytes
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Post‑transplant lymphoproliferative disease or disorder (PTLD)
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Solid organ transplant
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T-cell removal
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Transplant rejection
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White blood cells
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Video: PTLD at a glance

If you or someone in your care has had a transplant, you'll want to know more about PTLD.

PTLD stands for Post-Transplant Lymphoproliferative Disease (or Disorder).

It is a group of rare diseases that can happen after either a solid organ transplant or a blood stem cell transplant from a donor.

All types of PTLD affect certain lymphocytes. A lymphocyte is a kind of immune cell and there are different kinds of lymphocytes.

In PTLD, one or more types of lymphocytes can become abnormal and grow out of control.

PTLD can range from mild, benign growths to aggressive blood cancers called lymphomas.

To understand why PTLD happens, let's look at how lymphocytes are affected after a transplant.

Lymphocytes are part of the immune system, which protects your body against harmful things. This includes viruses, bacteria, and abnormal cells.

Immunosuppressants are medications that are given before, during, and after a transplant.

It's important to continue taking them at home to help keep your transplant healthy.

Immunosuppressants work by weakening the immune system. But with a weakened immune system, abnormal lymphocytes may grow out of control. This can lead to PTLD.

PTLD can become life-threatening, and it can show up as many different symptoms, including:

  • swollen lymph nodes,
  • unexplained weight loss over a few weeks,
  • fever or night sweats,
  • sore throat,
  • fatigue,
  • chronic sinus congestion,
  • severe abdominal pain,
  • no appetite, nausea, or vomiting, or
  • black or bloody stools.

These are not all the possible symptoms of PTLD. Even if you notice a general change in how you are feeling, tell your transplant team right away.

If you are diagnosed with PTLD, your transplant team will go over your treatment options with you.

If you have questions about PTLD, talk to your transplant team to learn more.

Video: What causes EBV‑positive PTLD?

If you've had a transplant, you might want to know: What causes EBV-positive PTLD?

We can find clues right in the name of this disease, which stands for Epstein-Barr Virus-positive Post-Transplant Lymphoproliferative Disease or Disorder.

EBV is a virus that nearly everyone picks up in their lifetime.

Post-transplant is another way of saying after a transplant.

For the next clue, let's look closely at a drop of blood. Lympho comes from lymphocytes. These are cells in your blood, and include T cells and B cells. As part of your immune system, these cells help defend your body against germs and diseases.

Proliferative means growing or multiplying quickly.

Now, let's put these pieces together.

EBV can get inside the B cells of your body. B cells with EBV can grow so there are more and more of them.

Usually, T cells get rid of most of the B cells that have EBV. This is why most people with EBV don't get sick. So why can things change after a transplant?

After a transplant, you take medications called immunosuppressants.

These medications slow your T cells down. This helps keep your transplant healthy. But the slowed-down T cells may have a harder time getting rid of B cells with EBV, which can continue to grow or multiply. This can lead to EBV‑positive PTLD.

It's important to take your immunosuppressants, and to tell your family about how you're feeling. Together, you can talk to your doctor about any questions you have.

Blood stem cell transplant

blud stem sel TRANZ-plant

In a blood stem cell transplant, blood stem cells from a donor are put into your body through a central line.

Blood stem cells are collected from three places:

  • bone marrow
  • peripheral blood
  • umbilical cord blood

When the donated cells are in your body, they go through your bloodstream and into the bone marrow. In the bone marrow, they help create new, healthy blood cells.

Blood stem cell transplant is also called allogeneic hematopoietic stem cell transplant, HSCT, or HCT.

Epstein‑Barr virus (EBV)

ep-stine-BAR VY-rus

EBV is one of the most common viruses that people can get. It is also known as human herpesvirus 4.

Most adults will have had an EBV infection and carry EBV without any symptoms. EBV may cause symptoms in people with a weakened immune system.

Epstein‑Barr virus (EBV) active state

ep-stine-BAR VY-rus AK-tiv stayt

When EBV is in its active state, it can make many copies of itself and spread.

The active state is also called the lytic phase.

Epstein‑Barr virus (EBV) dormant state

ep-stine-BAR VY-rus DOR-ment stayt

When EBV is in its dormant state, it does not make copies of itself and spread. It hides inside B cells and can cause them to multiply abnormally. T cells keep these B cells under control.

EBV in its dormant state is harder for the immune system to detect and get rid of. This is how EBV can stay in the body without causing symptoms.

EBV in its dormant state may become active again if the immune system is weakened.

The dormant state is also called the latent phase.

Graft-versus-host disease (GvHD)

GRAFT ver-sus HOST dih-zeez

Graft-versus-host disease is when the donor's immune cells from the transplant attack your body. Immunosuppressants must be taken to prevent this.

Immunophenotyping

IH-myoo-noh-FEE-noh-ty-ping

Immunophenotyping is a lab test that tells white blood cells apart by the features or 'markers' on their surface. The results help doctors diagnose diseases like lymphomas and PTLDs. The test is done on tissue samples, like blood and bone marrow.

Lymphocytes

LIM-foh-sites

Lymphocytes are white blood cells. They are a part of your immune system. There are three main types:

  • T cells
  • B cells
  • natural killer (NK) cells

Each type of lymphocyte protects your body from infections and diseases in its own way.

Lymphoma

lim-FOH-muh

Lymphoma is a type of blood cancer that begins in your lymphocytes. Lymphocytes are a type of white blood cell. There are two main types of lymphoma:

  • Hodgkin lymphoma
  • non-Hodgkin lymphoma

Certain lymphomas that appear after a transplant are considered PTLDs.

Post‑transplant lymphoproliferative disease or disorder (PTLD)

post‑TRANZ-plant LIM-foh-proh-LIH-feh-ruh-tiv dih-ZEEZ or dis-OR-der

PTLD stands for:

  • Post
  • Transplant
  • Lymphoproliferative
  • Disease or Disorder

'Lympho' refers to lymphocytes, a type of white blood cell.

'Proliferative' means growing or multiplying quickly.

PTLD is when your lymphocytes grow out of control after a transplant. It can develop in anyone taking immunosuppressants after a transplant.

PTLD is a group of diseases. It includes certain kinds of growths and lymphomas. PTLD can become life-threatening. It needs to be brought up to the transplant team so they can diagnose and treat it quickly.

PTLD is often linked to the Epstein‑Barr virus (EBV). If there is a link, it's called EBV‑positive PTLD. If there is no link, it's called EBV‑negative PTLD.

Solid organ transplant

SAH-lid OR-gun TRANZ-plant

In a solid organ transplant (also called SOT), a whole or part of a healthy organ from a donor is put into your body.

The organs that can be transplanted are:

  • kidney
  • liver
  • heart
  • lung
  • intestines
  • pancreas

A multi-organ transplant is when more than one organ is transplanted.

T-cell removal

T-sel ruh-moo-vl

T-cell removal is the process of removing or reducing T cells from donor grafts in blood stem cell transplant. It is done to lower the chances of GvHD.

T-cell removal is also called T-cell depletion.

Transplant rejection

TRANZ-plant ree-JEK-shun

Transplant rejection is when your immune system attacks the donor tissues or cells. Immunosuppressants must be taken to prevent this.

White blood cells

wite blud sels

White blood cells are a part of your immune system.

There are different types of white blood cells:

  • granulocytes (neutrophils, eosinophils, and basophils)
  • monocytes
  • lymphocytes (T cells, B cells, and NK cells)

Each type of white blood cell protects your body from infections and diseases in its own way.