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Case Study

Advanced Achievement in Transplant Management

Case Study


End Stage Heart Failure: Two Patients, Two Paths


Health Plan’s Case Manager, Jan Pearce has been following one young patient’s medical journey since her congenital heart condition began to deteriorate about the time around 7 years ago when she was transferred to the adult cardiology program at the {COE} nearest her from the pediatric program in Houston. Jan has been concerned recently that Angela was coming to the end of what could be done medically, so she wasn’t surprised to see a note on her desk, early one Monday morning saying that Angela was back in the hospital’s progressive care unit for a “tuning up” with a request for health plan approval to proceed with an evaluation for transplant.


What Jan wasn’t expecting was a call from a hospital about 40 miles away. There, in a facility with no capacity for mechanical cardiac support beyond insertion of an intra-aortic balloon pump (IABP), was Aaron, a 45 year-old previously healthy and active man who had suffered a massive MI early Saturday morning, and was now in the ICU on an IABP, showing major left ventricular dysfunction and requiring persistent interventions for dysrhythmias. The hospital was calling for assistance in helping get the patient transported for advanced support or transplantation to the same hospital where Angela was being treated.


So Jan was faced with two patients who had arrived at their end stage heart disease in very different ways: one chronic, one acute; one with a long history, and well known to the hospital staff, one with no previous negative health history at all and a total stranger to the cardiovascular team. She quickly ascertained that both were qualified patients for transplant evaluation, but wondered if either, in their current conditions, would be viable candidates at present. Just as quickly she put into motion all of the required information gathering and communications with key people that needed to happen for each. She also contacted her COE network organization to begin putting together information to access the network’s contract provisions for both patients.


AARON’s Story

First she reviewed Aaron’s situation, since she felt he was in the most immediate critical situation. It was clear Aaron had ischemic myocardopathy, just a fancy term for heart muscle failing because of inadequate blood supply to a very large portion of the heart. She knew this was an indication for transplant. She also knew that the evaluation for transplant was going to have to be truncated, that not everything could be done to make certain he had a reasonable chance to survive the transplant or that he had adequate caregiver support and financial means to be a candidate. She set about finding out what she could to help her friend Carla, the pre-transplant cardiac coordinator get everything in order needed for decision-making while she made certain Aaron was on his way by ambulance to the COE with the IABP functioning well. 

Then she turned her attention to Angela. This twenty-five year old young woman had spent a good portion of her early life in the Houston pediatric hospital. Her mom had gone there when prenatal ultrasound discovered that the unborn baby had a very poorly developed left ventricle and was unlikely to survive beyond a few days or weeks without a major cardiac surgical intervention; thus would need critical cardiac care from the moment of birth. Angela had gone on to have the first of three staged congenital heart disease procedures, the Norwood procedure incorporating a Blalock-Taussig shunt, at age 3 days. She did well enough that at 5 months she was able to undergo the second stage procedure, the bi-directional Glenn procedure, followed by the final stage, the Fontan procedure when she was 3-1/2 years old.  She has had the very best of life-long cardiac care, but the many surgical corrections have left her with serious lung, liver, and gastroenterological problems.


Within two days, Carla notified Jan that Aaron was not a transplant candidate due to severe liver congestion, pulmonary problems and rising concern about kidney failure. The transplant surgical and medical physician and nursing teams along with the social worker, dietician, and financial representative had decided at the selection conference that day that the best course was surgical implantation of a left ventricular assist device (LVAD) to support Aaron’s heart while the IABP was removed, and to give him time to improve physiologically until he could withstand a heart transplant. This use of an LVAD as a bridge to transplant decision led Jan to contact the network organization to access their contract for the device and its maintenance while Aaron waited, hopefully at home, for the best timing for transplant and organ offer. The LVAD, a HeartWare XVE device was implanted the next day and within 5 days, Aaron was home, feeling stronger every day.


ANGELA’s Story

In the meantime, Angela’s evaluation was proceeding in a more leisurely fashion. Jan was being informed by Carla how each phase was going, and at the end of the week it was appearing that the outcomes of the liver and lung evaluations were likely to show there to be multiple absolute contraindications to heart transplantation. Indeed, at the next Monday multidisciplinary selection conference, the decision was that a ventricular device designed to be used long term, without intent to transplant was the only realistic course for Angela’s failing single working ventricle.


This use of the “destination VAD” therapy they knew, however, is not approved by the FDA outside of a clinical trial designed to gain more information about the long-term benefits of this approach in failed congenital defect corrections. Jan had attended one of the network organization's seminars on VADs, and knew that there was an approved trial at a large tertiary hospital in the Pacific Northwest. Jan began putting together the information needed for the health plan to make a determination on the trial, and on her own initiative began inquiries as to whether the COE where Angela was could be a secondary site for recruitment to this trial. That would prevent Angela from having to leave her extensive support system in the San Antonio area.

With diligence on her part, timely communication to her health plan, and superb support from the network provider, Jan skillfully managed the extensive details for both of these difficult situations.  Angela got enrolled in the clinical trial and received her HeartMate II destination device at her preferred COE within another week. Aaron went on to recover full organ function making him an ideal candidate for transplantation. At four months after his near-fatal MI, the transplant team notified the Organ Procurement Transplant Network that they were placing Aaron on the allowed 30-day listing period at Status 1-A (the next available suitable hearts go to Status 1-A patients), and in another 14 days he had a new heart.

Jan was very happy that she had successfully completed the transplant network’s Advanced Achievement in Transplant Management Course, and had a strong working knowledge of benefits of a COE program, managing communications with multiple stakeholders, collecting the right financial and performance information to help health-plan decision making, working with the transplant program’s care coordinators, and making sure that the claims processing through the complex activities involved were being handled flawlessly by the network organization.