AL Amyloidosis

AL Amyloidosis

Your Health Care Team

When you were diagnosed with AL amyloidosis, you might have felt like you were alone. But beyond your family and friends, there is also a team of healthcare professionals who are with you every step of the way. There to help you find treatment options for the best outcomes. In addition, there are patient advocacy groups who are also always here to help. Find out more about these below.

Your care team is known as 'multidisciplinary' because it includes specialists from different areas of medicine, working together for your wellbeing. Understanding their roles and responsibilities will help you prepare questions to ask during your treatment visits.

Below is a list of healthcare professionals you are likely to speak with at some stage in your treatment journey. Click to expand for more information on each.

Understanding your health care team

Outline who to expect encounter on the care team and their respective roles.

Health care team may differ slightly based on countries’s healthcare system (ie. social worker and psychiatrists, psychologists might not be provided in all countries).

Your GP was probably the first person you saw when you became ill. Even after your treatment gets under way, your GP may still be the first person you contact for any healthcare issues.

Your GP will have referred you to a specialist who is either a medical oncologist or a haematologist. Oncologists are trained in diagnosing and treating cancer, while haematologists are experts in diseases that affect the blood.

An oncology nurse is specially trained to work closely with your haematologist or oncologist to coordinate your care and treatments.

A cardiologist specialises in the treatment of heart diseases and heart abnormalities and can help diagnose and manage your condition.

Social workers can help you with emotional, physical or financial problems. They can also advise you about any practical support services available.

You may benefit from speaking with a professional counsellor, like a psychiatrist or a psychologist.* Learn more tips on how to protect and manage your mental health.

*What is the difference between a psychiatrist and a psychologist?

A psychiatrist is a medical doctor trained to diagnose and manage mental illness. Psychiatrists can prescribe medication, such as antidepressants, if you need them. A psychologist is not a medical doctor, but someone who is well trained in counselling and human psychology. They cannot prescribe medication.

Questions to ask your healthcare team

Whether you have a formal diagnosis or not, it is important to make the most of your appointments. Here are some helpful tips:

Before your appointments:

  • Write down any questions or points you want to talk about as you think of them and take them with you. These could be to do with anything from new symptoms to side effects, to how you are feeling, your family and friends, your personal situation, work, hobbies or any issues you may have with your treatment or choice of treatment.
  • Make sure you share your questions with your doctor at the start. Do not wait until the end when the doctor has run out of time

  • You could ask a family member or friend to come with you. Perhaps they can take notes while you talk to the doctor.

During your appointments:

  • It can often be difficult to remember everything. You might want to write down what your doctor says so you can refer to your notes afterwards, or even record the appointment (with your doctor’s permission).

  • You might not know all of the medical terms mentioned during your consultation or treatment. If there is a word you have not heard of before, ask the doctor or nurse to explain

Below are example questions to start a conversation with your healthcare provider. Other relevant questions that are not listed here may be based on your symptoms, stage, and medical history.

  1. What kind of Amyloidosis do I have?
  2. What is the preferred treatment choice for my type of disease?
  3. What can I expect from my treatment and how will it affect my day-to-day living? What symptoms should I look out for?
  4. Are there lifestyle changes I can make to help with my treatment?
  5. Is Amyloidosis hereditary? Do I need to test my children?
  6. What clinical trials are available for AL amyloidosis treatments?
  7. How do I join an organ transplant list?
  8. How do I make myself more eligible for an organ transplant?
  9. What support services are available to me?
Logo Janssen | Pharmaceutical Companies of Johnson & Johnson