Your lifetime team member: the transplant social worker

Getting a new kidney is a lifechanging event for anyone living with kidney failure. It requires a lot of moving pieces to come together to make it happen and involves a whole team of people beyond the recipient and donor! One member of that team that may not immediately jump to mind is your transplant social worker. 

Distinct from your dialysis social worker, a transplant social worker is there for you through the whole transplant process — from the initial referral to post-transplant care. "As a member of a transplant team, the social worker provides patient education and emotional support, is responsible for referrals to community agencies, coordinates patient care with other team members, and assists with concrete services," according to the Society of Transplant Social Workers. 

Some of the services your social worker may provide include help with housing, transportation, immigration or medicine access issues; information and referrals for disability and retirement benefits, medical insurance coverage and other financial issues; and referrals to community resources like fundraising or nonprofit organizations that can provide additional resources — like AKF. They can also direct you (or your loved ones) to support groups or provide referrals to mental health services, assist with any issues returning to work after transplant or help you connect with your donor or their family if you'd like.

Hannah J. Graves has been a transplant social worker at the Piedmont Transplant Institute in Atlanta since 2019. AKF was delighted to talk with her and learn more about her job and work with kidney transplant recipients.

Editor's note: Responses were edited for grammar and clarity.

AKF: What made you decide to become a transplant social worker?

HG: Transplant is such a wonderful opportunity to help patients living with [kidney failure] to have a second opportunity at life. I worked with patients on dialysis previously and loved serving this community. The opportunity to help patients successfully navigate the transplant process is the greatest professional challenge and gift. 

AKF: What is a typical day at work like for you?

HG: The typical day is non-stop! I go from thing to thing to thing based on the phone calls, emails and messages that I receive about different patients and the challenges that they are facing. I need to triage needs and make sure that urgent needs are addressed first and needs that are necessary but not urgent get addressed later in the day. I get to see brand new patients to transplant in the clinic and complete their initial evaluations. I also get to see patients on the waitlist and review the information that we already have and make sure that patients who have already been transplanted are doing well. I want so much to help everyone and there is such limited time in the day!

AKF: Do transplant social workers work with patients pre- and post-transplant? 

HG: Different transplant centers do things differently, but a transplant social worker is available to patients working on both the pre-transplant center side and the post-transplant center side. You may have the same social worker throughout your journey, or you may have a different social worker once you're on the waitlist, in the hospital receiving your transplant or once transplanted. No matter who it is, a transplant social worker is available to you.

AKF: Do you only work with kidney transplant patients? Or do you work with anyone who needs an organ transplant?

HG: I only work with kidney transplant patients. Each organ is so unique in their specific needs and challenges that it is necessary to have a social worker who is knowledgeable in that specific organ.

AKF: What is the most challenging part of your job?

HG: Time! There is never enough time! I don't know where the time goes. Talking with patients who are in a very specific part in their journey requires time and follow up questions – time! Meanwhile, there are other calls, emails and messages coming through that require time to make the right plan of care and not just the fast one.

AKF: What is the most rewarding part of your job? 

HG: The patients! Seeing someone… having a transformation of their life! They feel well, they can get off dialysis, go back to work and feel like the future is theirs. It's awesome!

AKF: What is the most surprising part of your job? 

HG: It's so surprising to me how much the health care system demands of patients. The process to get on the transplant list is so challenging and there are so many steps and then there's the waitlist and then the post-transplant regimen. And we demand that patients learn what it's all about on their own!

AKF: What is something people may not know or understand about the transplant process and/or the recovery process? 

HG: It may not be understood that an organ transplant is major surgery that then asks your body to heal while the immune system is being suppressed. Given this, post-transplant complications are common, and those complications can cause multiple admissions to the hospital to manage infections that would not be a big deal for a non-transplant, non-immunosuppressed person. For transplant patients, however, a simple infection is not only a threat to the person's life, but also to the life of that transplanted kidney. The fear and anxiety that a person who has received a transplant experiences can also be extreme, especially as they contemplate their life with their kidney in a world full of possible infection opportunities.

AKF: What is one service that transplant social workers provide that you wish more patients knew about?

HG: I wish that patients who receive a transplant knew that they have their transplant social worker for life! Meaning, if they've had their transplant for 10 years, never having a problem or needing any help, but then something happens, you can reach out to your transplant social worker! Don't be afraid to ask for help! You and your transplanted organ depend on it!

Find out more about the kidney transplant process on AKF's website or check out our new resource, Your Guide to Kidney Transplant.