The first step of the transplant process for some patients is being evaluated and discussed by the team to be placed on the waiting list – a decision made in most transplant centers by a multidisciplinary committee. We attended a handful of these meetings as a “fly on the wall” to better understand what they were about. Here is our breakdown.
At Mayo Clinic, every week our committees get together and review patients who’ve been evaluated to be waitlisted for transplant. Each organ group at each Mayo Clinic location meets to present and review patients’ cases. These committees are comprised of members from the transplant care team such as a cardiologist, nephrologist or gastroenterologist, etc., the surgeon, psychologist/psychiatrist, social worker, transplant nurse coordinator, dietitian, pharmacist, infectious disease specialist, and finance specialist. Each member of the team has met with the patient and discussed the different aspects of transplantation from insurance to caregiver support, diet, and vaccines they might need. Transplantation has many different moving parts, requirements, and regulation from both a national and center level. Receiving a transplant is an amazing gift, but it is one that requires lifelong care. This comprehensive approach helps ensure we are best supporting our patients’ needs and being good stewards of the organs that have been generously donated. There are an average of 110,000 individuals on the waiting list for transplant—that does not include those who are still needing to be waitlisted—and there aren’t enough organs available for donation. Mayo Clinic has been a leader in finding ways to expand the donor pool by starting the Ex Vivo Lung Perfusion program for lung transplant, transplanting liver patients with lower MELD scores, successfully transplanting organs that were previously denied for donation, and we see strong outcomes. But our teams make mindful decisions about the best treatment path for patients.
The team reviews a patient’s case and determines one of the following actions regarding waitlisting them for transplant:
- Accepted
- Defer
- Denied
If a patient is accepted, that means they are being added to the waiting list for transplant and will receive an organ when one becomes available to them.
If a patient is deferred, it is typically because one of the members of our comprehensive committee would like to meet with them again to iron out some details, for example, someone could need to have a more structured support system in place since care after transplant is essential for success. A patient who is deferred is also one who might benefit from some treatments that are bridges to transplant like the LVAD for heart transplants. A patient who is deferred will continue to be seen and monitored by our transplant team. They remain on the committee’s notes for review again the next time they convene or when their condition can no longer be managed.
Lastly, a patient could be denied. Several members of our care teams express that this is the hardest part of their job. Our team explores every option to best care for their patients, and sometimes transplant is not the right treatment plan. Patients must be healthy enough to survive the surgery, and they must be free from illnesses, such as cancer, that could be worsened by being immune compromised. Patients must be able to comply with the team’s policies and recommendations, and they need to have adequate support from friends or family. If these circumstances are not met, if they are able, transplant centers try to help patients who are denied with alternative treatment recommendations. Sometimes a patient is denied because it is too early for transplant, meaning they would do better without a transplant than with a transplant. This doesn’t mean that the patient will never need a transplant, they just don’t need one now. Patients who are denied for this reason are monitored for any changes in their condition that would lead to reassessing the need for transplant.
Transplant is a complex process that requires complex decision making. That’s why our teams rely on evaluation facts from every discipline to be sure we are making the best decisions for our patients and for our donors and donor families. We want to care for every patient as best we can.
HELPFUL LINKS
- Explore Mayo’s Transplant Center
- Request an appointment
- Learn more about transplant regulation on UNOS website
- Connect with others in the transplant discussion group on Mayo Clinic Connect
- Visit our Transplant Toolkits
What happens to ,patients that are denied a transplant but are otherrwise healthy and functioning normally? Are they simply left to die. Why does a transplant or LVAD be the only two choices for HF
Nafoyo, I believe from reading your past posts that you have non-ischemic cardiomyopathy, correct? Has the cardiologist been able to determine the type of cardiomyopathy? Depending on your specific diagnosis, there may be other treatments options.
I have been observed by five Mayo cardiologists and was classified as in end stage heart failure I don’t know if this constitutes a specific diagnosis for cardiomyopathy In Oct 2020 my family had me admitted in the hospital because I was struggling going up 32 stairs to our 3rd floor apt. Upon admission to the hospital this condition had gotten worse to decompensated HF with an EF of 15 which I as advised could only be permanently corrected with a transplant as per “guideline directed medical therapy”. I was fully functioning the next day after diuresis and dobutamine iv. Was discharged with this iv which I am stilling using today 24/7. My attending Cardiologist has told me in no uncertain terms that he holds up no hope for me. That the dobutamine I am now taking may not be long term. The only hope is to go shopping for another heart at competitor institutions that will take a Mayo reject. Or be plumped up with an LVAD according to “advanced recommended guideline”
The thing that has been frustrating is that all the tests that have been performed have never answered the specific question as what is causing the cardiomyopathy! Are there any treatment options outside of ACC "guidelines"? Please help me.