Organ transplant is a complex process. Many things must happen to:
- Get on the wait list
- Prepare for the transplant
- Receive the transplant
- Live successfully with the new organ
As a caregiver, you are very important in this process. You will care for the patient before and after the transplant, during:
- The transplant evaluation
- Their recovery in the hospital
- Their recovery at home
Transplant social workers will meet with you and the patient to help you prepare.
Transplant is a long process with many stages. The amount of time you will care for the patient depends on the kind of organ transplant and how recovery goes. Some patients require care all day, every day.
Below we list the stages of transplant and the emotions you or the patient might feel. You must be prepared for a long or difficult recovery. You and the patient might feel physically and emotionally exhausted during the process.
Learn more about:
- How being a caregiver can affect your life and how to care for yourself.
- Responsibilities for organ-specific transplant. Find your organ's section of the toolkit.
Stages of Transplant:
Diagnosis: Learning the patient needs a transplant
- You might feel worried, sad, scared, or uncertain
- You might feel like it cannot be true
Transplant Evaluation Process
- The patient will have many uncomfortable medical procedures and appointments
- The patient may need to make health changes that affect their daily life
- You might feel worried or uncertain
Waiting for a Donor
- The patient might have severe health problems and need to be in the hospital
- You might have questions like:
- “Should I hope they get sicker to get a transplant sooner?”
- “Can I have my own life, while they wait for a transplant?”
- You might feel guilty, because “another person has to die for them to live.”
- Family relationships might be stressed
- Receiving the Transplant Call
- You might feel joy, guilt, scared, numb
Short-term Recovery
- You and the patient might be physically and emotionally exhausted from the hospital stay
- The patient might have medical complications, need to be in the hospital longer, or need more surgeries
- You might need to learn a complicated medication schedule and understand side effects
- You will need to take the patient to many appointments (blood draws, transplant check-up, etc.)
- You might need to live with the patient, so you will spend time away from your home.
- You will need to ask for (and accept) help.
Long-term Recovery
- Recovery might be slower than you expected
- The patient might be exhausted
- The patient might have side effects such as tremors, difficulty with memory, or mood changes
Maintenance
- You will have a “new normal” -- careful planning to follow restrictions
- You might worry the patient’s body will reject the new organ or they will need another transplant
- You or the patient might have financial worries
- You might have changes in your relationships with friends and family
- You might have changes in your work, family, and daily priorities
- You might ask where to go from here.
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