Your Heart Transplant Coordinator

| April 14, 2011 | 0 Comments

Once you are enrolled in a heart transplant wait list, you will be assigned a heart transplant coordinator.  At Columbia Presbyterian, there were four coordinators to handle more than 150 wait list patients. 

The role of the coordinators at Columbia Pres was different than the role of the coordinators at Tampa General Hospital.  At Columbia, I was assigned a coordinator who sat down with me as soon as I was enrolled.  The coordinator explained her role and gave me a direct phone number emphasizing that she would try to answer questions about the wait list and my status.  Her roles were to advise me when an organ became available, make all the plans for admission and to field questions about the wait list.

At TGH, the assistants to Dr. Hoffman are called coordinators.  The good doctor has three coordinators but may have another behind the scenes coordinator as I now receive scheduling calls from a person named Sonya who I have never met.

When the call from TGH came for an available heart, it was made by another coordinator named Anne who was also unknown to me.  At Columbia Pres, the coordinators did not have a “hands on” role.  Her job was to keep me in the loop and respond to my queries.  When  I left Columbia, they had more than 190 persons waiting.  

The sense of stress when the Columbia coordinator was called was unmistakable.  The answers were elusive.  “Your name keeps coming up,” was the stock response.  As the number of wait-listers grew, there was clearly stress among the coordinators who seemed to have a rapid turnover rate.

Think about telling a patient that really needs a heart that there are none available month after month.  Eventually, I stopped calling and resorted to the UNOS-OPTN site to see what was happening at Columbia and what was not happening.  At one point their transplants fell well below the previous year’s production by a significant number so the wait list ballooned.

That is when it became necessary to transfer to a more aggressive organ procurement center.  TGH was the answer for me.

Dr. Hoffman’s “hands on” assistants are called transplant coordinators.  To me, they are experienced transplant nurses.  There is definitely a chain of command.  While on the wait list, one of Hoffman’s coordinators became familiar to me.  She now seems the foreperson on Team Hoffman.

Now that I am in the recovery mode, I meet or talk with Marge and a fairly recent addition to the staff,  Juri.  Marge and Juri are very qualified, play by the book and are good listeners, a quality that patient’s like.  Marge and Juri explain things patiently and with authority.  And, if they do not have the answers, they offer to discuss the situation with Dr. H. 

At Columbia, Dr. Mancini has a strong, experienced and committed assistant.  Dr. Mancini does not have a lot of time for bedside manner so her right hand, Margaret Jones, filled the gap quite nicely.  Margaret was a gem and truly dedicated. For a brief period, she took a leave of absence to go with one of her daughters to do missionary work in South America. I missed her but really admired her commitment.

Like Mary, Marge and Juri of Team Hoffman, Margaret was a hands-on assistant.  They make sure prescriptions are filled, testing is scheduled and results conveyed to the patient while listening to questions fired by my ignorance.  There are no compliance lectures here.  That is and should be a role reserved for the physician.  More than once, Mary brought up compliance issues with me.  That was her way of saying she did not understand the cause of my problems.    

Juri is a younger (sorry Margaret) version of Margaret.  In terms of patient relations, Juri gets it.  That is not to say that Marge is not engaged, but Juri tends to be more analytical and expresses herself extremely well. 

Dr. Mancini’s workload is excessive.  Despite her hectic schedule, she does not miss anything.  Because she is so busy, it was always a relief to speak with Margaret who made the time to answer my mundane questions.  Once, she said to stop following Columbia Pres on OPTN because I knew more about the transplant list than she did.

When I had the option to enroll at TGH, it was Margaret that I called.  I still feel indebted to her.  Margaret Jones is the consummate transplant assistant.  I hope she is still with it.

At Albany Medical Center, Dr. Philbin also has several assistants, including at least two interns.  When Dr. Philbin says something needs to  happen, it happens.  If you are an inpatient, the necessary physician comes to your room as scheduled.  If you are an outpatient, appointments are made and confirmed by Philbin’s staff.  The patient receives written confirmation of all appointments.  These good people get it right the first time and the are always listening.

From the patient’s point of view, in terms of efficiency, Philbin’s transplant clinic is a very positive experience.  Of course, Albany Medical Center is a teaching hospital, like Columbia, so it is interesting to see the troops gather for rounds.  Dr. Philbin’s staff always made this a very non-invasive exercise.

In any case, while you are on the wait list and while you are in recovery, you will spend more time with the assistants than you will with the actual doctors.  In other words, it is important to have an assistant or two that can be leaned upon.

I am impatient.  This is a bad habit.  I always want things to happen quickly.  Perhaps that is one reason that I am in this situation. 

I pray for patience and precision.  When things go wrong, I do not want to hear is, “Mr. Doolittle, we may never know what caused that.”  Certainly, it is tough to teach old dogs new tricks but I guess it can be done because I have heard that answer a lot in the last 16 months.

In any case, hail to the transplant assistants and coordinators. Do not be afraid to voice your concerns.  If these good people are busy and do not have time to listen, wait until they do.  I always have a list of questions when  I arrive at the clinic.  Margaret and Juri usually have the answers.  Be persistent, they really do want to help.  That’s a good thing!

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