Your Blood Disorder Treatment Team
If you’ve been diagnosed with a blood disorder, particularly a rare one like polycythemia vera or myelofibrosis, you will need support from your specially trained hematology/oncology treatment team. The members’ knowledge and expertise will help guide you through your diagnosis and treatment, answering your questions throughout the journey.
There are several healthcare and allied healthcare professionals who may be on your team; here are a few you may come across:
A hematologist is a medical doctor who specializes in the treatment of blood disorders, ranging from anemia to sickle cell anemia. However, treating blood disorders involves more than just the blood. Hematology also includes treating or managing conditions that affect your:
Bone marrow, where blood cells are formed
Lymph nodes, which filter out unwanted cells
Platelets, which help your blood clot
Spleen, which help filter and store blood cells
Instead of a hematologist, or in addition to one, you may have a hematology oncologist on your team. A hematology oncologist also specializes in blood disorders, but even more specifically, cancers that affect the blood, such as leukemia or lymphoma.
Hematology Nurse Practitioners
Hematology nurse practitioners are advanced practice nurses. They specialize in caring for patients with blood disorders. In some clinics, it’s the hematology nurse practitioner who sees patients on a regular basis and manages every day care.
People with blood disorders may need frequent intravenous (IV) fluids or blood transfusions. Infusion nurses are registered nurses who have specialized in starting and maintaining IV devices, from the more common peripheral IVs (the ones in the back of your hand or arm) to central lines, which are long-term catheters inserted in your chest.
Depending on the type of blood disorder you have, your team may include a geneticist, to determine if your blood disorder is hereditary. This could be important information if you have children or if you plan on having children.
This highly-trained physician examines your blood specimens and bone marrow biopsies to accurately diagnose your condition and perform very sophisticated laboratory studies to isolate the genetic abnormalities responsible for your problem. This information is vital in helping your heme-oncologist develop a treatment strategy that delivers best outcomes with greatest safety.
People with long-term, chronic, or potentially fatal diseases such as leukemia, may need some help navigating the medical system and getting help from outside sources. If this need arises, social workers are a vital part of a blood disorder team. They can help you understand what is available and how to access different services.
If you have a blood disorder such as myelofibrosis, you may be told you have an enlarged spleen. This is a common complication, but it can make it difficult for your hematologist to treat the disorder. If this happens, you may need to have surgery to remove your spleen. Your surgeon will be part of your blood disorder treatment team and will evaluate if you should have surgery.
Eating a healthy diet when you’re ill can be difficult. You may not feel up to preparing the meals or you may find you don’t have an appetite. If you are having difficulty consuming the calories and nutrients you need during treatment for your blood disorder, a dietitian can help you develop a meal plan, or suggest alternative ways to get the nutrition you need.
Pharmacists are the medication experts on any treatment team. Pharmacists are involved in preparing chemotherapy treatments, discussing treatment options with your hematologist, and answering any of your questions related to your medications.
You are a vital part of your own treatment team. You can be as involved in the decision making as you want to be. Some people prefer for their team to tell them what’s going on, while others prefer to be part of the decision-making process. Speak to your hematologist and other team members about how involved you’d like to be, and ask questions when you don’t understand something.
Blood disorder treatment teams will vary between hospitals and even between patients, according to each individual’s needs. The teams may also change as your treatment changes. Ask your team members how you can work with them to increase your chances of success.
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- What Should I Know About Blood Conditions? American Society for Hematology. http://www.hematology.org/Patients/Blood-Disorders.aspx
- Hematology Treatment Center. Dana-Farber Cancer Institute. http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Treatment-Centers-and-Clinical-Services/HematologyTreatment-Center.aspx#Treatment_Team
- Spotlight On: Oncology Pharmacists. Cancer.net. http://www.cancer.net/blog/2014-06/spotlight-oncology-pharmacists-%E2%80%93-part-i-qa