Sickle Cell Disease First Appointment

Your first appointment at Fred Hutchinson Cancer Center is a time for you and your hematologist to meet. You might meet a social worker and an advanced practice provider, too. You will talk about how sickle cell disease affects you, your current treatment and your future treatment options. This visit is also a time for us to start getting to know you as a person. This helps us fit our recommendations to you. Together, you and your team will decide what needs to happen next.

We encourage you to bring a family member or friend to your first appointment (and any future visits). 

Ready to schedule an appointment?

Director of the Fred Hutch Sickle Cell Disease and Iron Overload Program, Kleber Yotsumoto Fertrin, MD, PhD, shares what can be expected at a first appointment with the Sickle Cell Disease Program.

What to Expect

Our Sickle Cell Disease Clinic is on the fourth floor of the South Lake Union Clinic. Your first appointment usually takes 1.5 to 2 hours. You will spend about one hour with your physician. Here’s what you can expect to happen. 


Checking Your Health

When you arrive, a medical assistant will greet you, and you will get forms to fill out. The forms help us learn important details about your condition, symptoms and current treatments, like the medicines you take. The history you share will help us understand your exact needs. We also want to know any questions or concerns you would like to discuss.

Next, you will see a hematologist, who will talk with you about your health and how sickle cell disease is affecting your body and life. They will do a physical exam. If you need any tests, like blood work, to get more information about your current health, your physician will order the tests. You can have blood drawn for laboratory tests the same day on the first floor of the clinic.

doctor reviewing record

Discussing Your Treatment

Your physician will want to know all the treatments you have been using and how well they have worked for you. You know your body best. Tell your physician what works for you and if any treatment isn’t working the way you need it to.

Based on your exam, your conversation and any test results, your physician will explain the treatment we recommend for you and why. We want to make sure you understand all your options, including the chance of a blood or marrow transplant.

These appointments are also a time for you to tell us about yourself. Each patient and family have their own needs and preferences. We want to get to know you so we understand the best way to care for you.

doctor writing prescription

Connecting You With Other Specialists

Many types of care providers are here for you as a Fred Hutch patient. Your hematologist will talk with you about other Fred Hutch experts who can help you stay as healthy and active as possible, now and over the long term. For example, we have registered dietitians to help with food choices, acupuncturists to help with pain relief and a special Pain Clinic if you have complex pain.

Along with meeting your current needs, we are here to prevent and manage serious complications that can happen. We will help connect you with other specialists you may need to see, like physicians who specialize in the eyes (ophthalmologists), heart (cardiologists), kidneys (nephrologists) and digestive system (gastroenterologists).

doctor reviewing notes with patient

Answering Your Questions

Starting with your first appointment (and after), we are here to answer your questions. We want to help you understand as much as you want to know about your disease, your treatment and how care happens at Fred Hutch. We invite you to bring a friend or family member with you to help keep track of your questions and the information that your team gives you.

We also encourage you to talk with your care team about your hopes and concerns. Knowing more about you helps your team recommend the right treatment for you.

Before you leave, we will make sure you know what is going to happen next and how you can reach us if you have questions later. We will also schedule your next visit.

Many new patients have blood tests the same day as their first appointment. Then, they will return soon for another visit to talk about the results and how the results might affect their treatment choices.

holding hands

Meeting With a Social Worker

Often, new patients meet with a social worker from our team the same day as their first appointment with their hematologist. Social workers are a resource for you and your family. They can help with many parts of living with sickle cell disease and getting the health care you need. Part of their role is to help patients get mental health support and manage the financial challenges that can come with a serious illness.

We understand that starting care with a new team at a new clinic can be complex. It sometimes feels overwhelming. Your social worker will help you get to know our system. They are by your side, making it easier to find the places you need to go and the providers you need to see.

Resources for Patients and Caregivers

Here are tips about how to prepare for your first appointment at Fred Hutch and what to bring.

Caregiving at the First Appointment

As a caregiver, you can give your loved one both emotional and practical support for their first appointment. Ask them if you can help with things like these:

  • Helping them manage their stress, worry or other feelings.
  • Planning how to get to and from the appointment, what time to leave home and where to park.
  • Making a list of questions they want to ask the physician. Fred Hutch’s Guide to Your Care has a list of questions they may want to ask the care team. At the appointment, make sure that all their questions get answered.
  • Taking notes during the visit. The physician will be giving a lot of details, which can be hard to remember later without notes.