• What are your main job responsibilities?
In my current position I do the donor searches for patients whose family members are not a match. I review the patient’s HLA typing, enter that data into the National Marrow Donor Program (Be the Match®) registry and from this, I can identify unrelated matched donors or cord blood units for the recipient. Here at NIH, I work with other transplant coordinators, research nurses and research teams.
My current job is just a part of what many transplant coordinators do, but I have held those roles at Georgetown and University of California, San Diego. Many transplant coordinators take a patient all the way from first referral for a stem cell transplant right through the transplant itself. They’re the touchpoint for the whole transplant team through the entire process.
Still, at any hospital a transplant coordinator may have somewhat different roles depending on the institution. At some, they may be doing what I do in addition to other things, which can go all the way through following the patients post-transplant.
• At what point does a transplant coordinator become involved in the process?
They’re involved right from the time a patient is referred for a transplant, so they are often the first person a patient actually meets. They contact the referring physician to get all the records and required information for screening. Screening is just what’s required to be sure a referred patient actually is a good candidate for transplant. They’ll ask about family members to see who might be a possible donor, identify roadblocks that might make getting a transplant difficult for a patient. This all happens within a few days of a patient being referred.
Stem cell transplant coordinators get the HLA typing completed, send testing kits out to family members, and run searches to see if the patient has unrelated donors. After the screening visit, patients are usually back home getting their routine therapy, so coordinators follow up with the patient after their initial visit to keep them informed and get more information from them. The transplant coordinator has to keep up with what kind of treatment patients are getting back home to keep up to date with the patient’s treatment and current condition. This information is all needed to help plan things that will be happening later.
The coordinator is constantly gathering all sorts of information to help the transplant team make decisions, including what to do if an optimal match is not located. It is important to follow treatment patients receive outside transplant process. For example if it’s an MDS patient on azacitidine (Vidaza®) you need to know the treatment schedule and what the side effects might occur, while the search for a donor is in process. But so much depends on the type of match that is located.
• What internal (including the transplant team) and external personnel does the transplant coordinator interact with?
Getting a patient to and through a transplant is not a one man show. It’s the definition of team effort – they’d be working the whole time with every team member involved, for example, the finance department with regard to insurance, the HLA and typing laboratories, the apheresis center when related donors are involved, radiology, molecular hematology, and so much more. It’s sometimes overlooked that transplants can affect every organ and system in the body so everything has to be examined and monitored. They will hook the patient up with resources to help them get to and through transplant – like social work, nutrition, and counseling.
• What are the main steps of the entire process?
The first phase could be called the screening phase. This covers the initial referral and screening. Here, the team gathers information about a patient, and the first decision that has to be made is whether the risk of transplant is less than the risk of no transplant For patients who need a transplant from a donor, this is the time when we gather information about their relatives and do an initial search to see if they have potential matches in the unrelated donor registry, called Be the Match®. We use HLA Typing – Human Leukocyte Antigen Typing – to match donors. HLA is the part of your immune system that recognizes whether cells it sees in your body belong or not. Because of the way it is inherited genetically, there is a 25% chance that a sibling with the same parents will share the exact same typing. That means that many people don’t have a sibling match, so we look in the Be the Match® registry. The registry is anonymous – I can’t see the donor’s names, just their HLA typing. And the donors don’t know the name of the recipient. This privacy is for the protection of both the donor and recipient.
In addition to HLA, we also consider the age, health, and other factors about the donors. We can collect stem cells 3 ways – from the marrow space itself (under anesthesia in an OR), from the peripheral blood, or from donated umbilical cord blood. The source of these blood stem cells that is chosen will depend on the patient, the physician, and the donor.
The second phase could be call the pre-transplant phase, where we narrow down the donor selection, then schedule the donor’s workup and collection. We are usually working up the patient at the same time to make sure that their organs and disease status are good enough to move forward to transplant. This is when teamwork becomes really critical – there are many people involved in getting a patient screened, a donor cleared, and getting all of the pieces onto the calendar to have the transplant happen on the day we want. Depending on circumstances, this part can take 3-6 weeks. Some of the things that can go “wrong” during this phase are having problems identified in the patient or donor screening that are unexpected, patients who become ill, or insurance approval problems.
The third phase would be the transplant itself. By this time, the coordinator’s job is nearly done, but the patient’s journey is really just beginning. The patient is usually admitted for conditioning chemotherapy and the stem cells are infused after a few days of chemo. In some institutions, the transplant coordinator follows the patient even after discharge, but many places also have a separate team that follows patients in the hospital, and then after they are discharged.
• Has progress in stem cell transplantation changed the job of the transplant
It absolutely has. The biggest changes are with the increased successes in transplanting older patients, the ability to predict donor searches, and increased safety using half-matched (haploidentical) transplants. This means there are more eligible patients and more transplants occurring all the time. Although the age for transplant candidates has gone up, still a lower donor age makes a big difference—the younger the better.
With more accurate HLA typing and improved bioinformatic systems, you can really tell almost right way if you are going to find an unrelated donor. In my 15 years doing this, this is biggest change. The search can go very quickly. When I started, I could spend months searching for donors before a decision was made about what to do. Now, once I have the HLA typing, I can tell almost right way if there’s a complete match or if we’re going to have to look at other options like haploidentical relatives, mismatched unrelated donors, or umbilical cord blood. Having this information up front will help patients since the wait to get to the actual transplant is much shorter. This is especially good for MDS patients who might progress to AML as more time goes by.
• Tell us about your own role as a donor – did this inform your professional life?
I have donated twice – once was stem cells for a patient with leukemia, and I donated my baby’s umbilical cord blood to a public cord blood bank. When you do what I do – eat, sleep and breathe transplant, being a donor is incredibly meaningful for professional and personal reasons. But the fact is under one percent of donors in the registry are actually called to donate. Whether you work in transplant or not, becoming a donor is easy and if you get called, it will be the coolest thing you’ve ever done. I always feel better about the world when I think about the 30 million people out there who have joined the registry to donate their stem cells if ever called.
I really like what I do –you get to see all the parts of a truly complex process, but you really are part of a large team of people who have the same goal.