PTLD stands for Post‑Transplant Lymphoproliferative Disease or Disorder.
PTLD is one of the rare but serious complications that can happen after a transplant. Since PTLD is rare, information and support can be harder to find. But you are not alone.
Explore this website to learn about PTLD so that you can:
recognize the symptoms
involve your transplant team when needed
be prepared for diagnosis and treatment discussions
find more resources
About this website
aboutPTLD.com was created with PTLD patients, caregivers, and representatives from nonprofit transplant, rare disease, and cancer advocacy groups.
We co-designed our PTLD educational materials together in a series of hands-on workshops, exploring:
what topics and features should be included
what voice and tone should be used
what the content should look like
what needs, goals, and actions the content should support
when, where, and how these materials would be used
Quick start
This website is for adults and caregivers of young patients who:
There are many types of treatment. The options available to you will depend on a few factors, including the type of PTLD you have and treatments you may have had before.
Each person's situation and needs will be different, but you don't have to do it alone. There are people, organizations, and communities that want to help.
If you visit any healthcare provider other than your transplant team, tell them about your transplant and immunosuppressants. They may need to contact your transplant team.
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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.
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.
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.
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.
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.
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