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Clinic Visits

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Next Topic: Infections and infection Prevention

Once discharged, you’ll begin regular clinic visits to monitor recovery and assure your new immune system and stem cells are working properly. These appointments are essential for tracking blood counts, managing medications, and diagnosing complications early. They may feel long, detailed, and sometimes unpredictable—but they’re a key part of healing.

What to Expect During Visits

  • Frequency and duration vary depending on your recovery stage—daily at first, then weekly or monthly

  • You may meet new providers or rotate through different members of your care team

  • Visits often include blood draws, medication reviews, infusions, transfusions and physical exams

  • Cluster care may be used—grouping multiple tasks (labs, consults, infusions) into one visit to reduce time and travel

Environmental & Visitor Restrictions

  • Ask about visitor policies—some centers limit guests during flu season or outbreaks

  • Be aware of nature-related risks—fresh-cut grass, soil, and standing water may carry infection risks

  • If you’re staying in temporary housing, ask about housing resources—some centers offer support for patients who live far away

What I Wish I Knew

  • That living within a certain mileage of the hospital may be required for a period of time

  • That visit schedules change over time—ask for a rough timeline

  • That support is available—social workers, housing coordinators, and nurse navigators can help

Questions to Ask

  • How often will I need to come in, and for how long?

  • What does the visit schedule look like after 100 days?

  • Who do I contact for medication refills, supply issues, or symptom concerns?

  • Are there restrictions on visitors or activities I should know about?

  • What should I bring to each appointment?

Helpful Tips

  • Bring all current medications from home—this helps your team verify doses and spot interactions

  • Ask about everything—even small symptoms or changes matter

  • Be specific—share full details about how you’re feeling, what’s changed, and what’s unclear

  • Expect delays: appointments can run long due to labs, coordination, or unexpected needs

  • Track questions ahead of time—use a notebook or app to stay organized

Next Topic: Infections and infection Prevention

Disclaimer: This Journey Map is for educational purposes only. It does not provide medical advice, diagnosis, or treatment. Every patient’s situation is unique, and care decisions should always be made in consultation with your clinical team.

We extend our appreciation to Sanofi and Alexion for their generous partnership and active participation in our community. Their support helped bring patients, caregivers, clinicians, and industry partners together to co-create this Journey Map and improve the transplant experience.

Our Journey Map was created for Patients and Caregivers by Patients and Caregivers. Please share any corrections or additions!