How To Pick The Best Heart Transplant Center
Part 3 of 3
Previous Article: What Are The Best Heart Transplant Hospitals
In the two previous articles, we identified the top 50 heart transplant centers as evaluated by US News Health. In the first segment, we reviewed the criteria used during the annual review process. The second segment listed the top 50 centers and showed the number of heart transplants performed last year and how many patients are presently waiting at each of those centers.
US News has done a good job and used sensible criteria to evaluate each center. Unfortunately, patients awaiting transplantation do not usually have the flexibility to select whatever center they prefer. The patient’s options are often determined by their insurance carrier, the location of the patient’s support network and the patient’s own geographical location.
The geographical location and the insurance carrier’s region of coverage greatly limit most transplant recipients. Heart transplant centers have definite but different standards required of their patients. The wait list patient must fully understand the requirements of the center. The theory is that patients who do not comply before transplantation will not comply post- transplant.
At heart transplant centers, compliance with their protocol is an absolute necessity. Non-compliant patients can be removed from the wait list. Compliance means discipline. Discipline taking medicines, discipline with diet and beverage intake and discipline weighing yourself. It means appearing for all appointments, attending any pre-transplant educational seminars and whatever unique terms the center requires.
This can include regular dental, eye, ear nose and throat and colonoscopies check-ups. The purpose for these requirements is to keep the body free of infection so that after the transplant when your immune system is suppressed, infections that previously existed in the body do not erupt and compromise your recovery.
My health insurance carrier provided me a choice of several transplant centers. Even though my cardiologist in Albany strongly recommended that I go to any of three transplant centers in Boston, I decided to list at Columbia Presbyterian in New York. I was pointed there by Mehmet Oz and was assigned to Dr. Donna Mancini. The combination of Oz and Mancini was very appealing.
Dr. Mancini taught me about the discipline of the waiting list. Adding to that great combination, the fact that Columbia Presbyterian was performing more than 100 heart transplants per year, and it seemed I was in good hands. Dr. Mancini also had the greatest assistant, Ms. Margaret Jones, who always made the time to explain answers and was ever so helpful. Nobody at Tampa General compared to Margaret for experience and dedication.
At Columbia Pres, my condition was status 2. Sick, but not sick enough. I also came to realize that Dr. Mancini was a busy woman in a busy hospital. Because I lived more than two hours away, Mancini and my Albany cardiologist, Dr. Harry Odabashian, coordinated my care. Yet, every time I met with Mancini it seemed like she and Harry were not exactly on the same age. I followed the heart transplant figures regularly. I had a pretty good handle on what was happening at Columbia Pres in terms of heart transplantation.
It became apparent that there was some sort of geographical valuation that affected the standard UNOS award terms of blood type, organ type, degree of illness, status, cavity size and time on wait list. These are not the only criteria used to determine who will receive a heart. What I came to realize was that even if I was status 1B, my chance of receiving a transplant at Columbia Presbyterian were not very good. I believe a good part of that was the fact that I lived in Albany, New York.
After conferring with my knowledgeable insurance carrier’s (CDPHP) personal transplant coordinator, we reviewed my options. Together, we analyzed what was good about Columbia Presbyterian and what the shortcomings were. To be honest, I began to feel like a bother to Dr. Mancini. Cardiologists in transplant centers are in a tough, tough position.
These are the reflections about Columbia Pres that led me to withdraw from the program.
- The coordination between Mancini and my Albany cardiologist and good friend, Dr. Harry Odabashion, was inconsistent. A friend of mine who had left Albany and who practiced at TGH, highly recommended Dr. Hoffman.
- The mandatory Columbia Presbyterian transplant educational seminars, were extremely helpful as a wait listed patient and later as a recovering transplant recipient. Unfortunately, the seminars were ended due to budget problems. Tampa General does not provide educational training.
- We wanted a heart transplant center that was in the business of heart transplantation every day of the year. Tampa General certainly qualifies.
- We wanted to be in an area that had an aggressive donor recruitment program. My CDPHP adviser knew that Florida had an outstanding donor recruitment program.
- We wanted a transplant surgery team that had experienced personnel trained at other excellent centers. Tampa’s Dr. Sheffield had trained at Duke and at The Cleveland Clinic.
- I wanted a transplant center that had excellent caregivers. My friend told me that TGH had shortcomings compared to Albany Medical Center but that the cardiology nursing staff was excellent. He was correct.
- I wanted a center that was performing as many annual heart transplants as there were patients on the waiting list. When I enrolled at TGH, there were performing about 60 heart transplants per year and had 42 people waiting. Twenty of the waiting patients were Status 7, or inactive. Those were great numbers.
After talking, my Capital District Physicians Health Plan coordinator sent me information about four other “centers of excellence.” Actually, she went a few steps further and recommended Tampa General.
I then began to consider other things.
- Where would I live while on the waiting list?
- Would the center accept my insurance?
- Who would treat me for other medical complications prior to transplant?
- How would life be without my bride by my side for long periods of time? Life and all its tests keep on going.
For me, these things all worked out. I began my Tampa General experience living with my son and his fiancée in Fort Myers. After a few months, we found a great little flat on beautiful Davis Island in Tampa. There was a 2.5 hour direct flight every day.
The flat was within walking distance of the hospital. Several people in the Merasol, a 70-unit apartment complex with extraordinary plants, privacy, a wonderful pool, docks and perfectly situated, soon adopted me and Tampa began to feel like home.
I had arrived. When I first was accepted to the Columbia Transplant program, I was not the same patient that I was in Tampa. My condition fluctuated between status 2 and status 1B.
I made mistakes, especially about how much exercise and work I could do. But, I did comply with every requirement including converting to a salt-free, controlled liquid intake diet, healthy exercise whenever it was possible and aqua aerobics when things were more challenging. I became focused on being prepared for “the call.” I was never sure that the big day would actually come but I was going to be ready. I meditated, stretched and tried to walk every day.
While I came to understand how hearts were awarded and the challenges that accompany end-stage heart disease, I was so focused on being ready for “the call” that I neglected to really understand the heart transplant recovery process.
You will have a better recovery than mine. It’s funny but I thought I was the perfect heart transplant recipient. I was in shape. My weight was good. My diet was very good. All my organs were in good shape except for the heart. I was not afraid of the transplant or the recovery. I wanted to live longer.
But, I should have been sure to learn more about what could go wrong and how demanding the recovery is. Because I was so focused on getting a heart, I did not consider the strength of Tampa General’s other departments and their importance in the recovery process.
If you have followed this blog, you will see a litany of challenges, some that were life altering and some that were overcome. In reliving my 2.5 years of recovery, I feel Tampa General’s supporting departments fell short in terms of inpatient infectious disease, inpatient general surgery, outpatient dermatology and outpatient pain management. Had I not left Tampa and returned to Albany, I would he been totally paralyzed or dead within two weeks. As soon as I arrived in Albany, I received an accurate assessment of the pain in my back and its cause, something TGH was unable to find. I was operated on immediately and my life was saved by Dr. Harry Odabashion and Dr. David Semenof, the neuro surgeon who and the courage to take on a challenging surgery. Tampa’s infectious disease team missed the diagnosis that cost me five inches of my spine and two ribs.
The bottom line is that the best heart transplant center is one where you receive a heart via capable surgeons, where you are cared for by capable and experienced cardiologists, where there are excellent non-cardiology departments that support the cardiologist and experienced nursing staff to care for transplant recipients. Of course, this center should accept whatever insurance you have.
In my experience, these are medical divisions that you will need during recovery. For outpatient services, use the time prior to transplantation interview and select physicians in each of these fields. It is a good idea to check the credentials and experiences of the inpatient departments and the functional capacity of the emergency room that you may have to use from time to time before and after your heart transplant.
- Cardiology – inpatient
- Heart transplant surgery – inpatient
- Emergency room
- Infectious disease – inpatient and outpatient
- Pulmonary – inpatient
- Endocrinology – inpatient and outpatient
- Neurology – inpatient and outpatient
- General surgery – inpatient
- Hematology – inpatient and outpatient
- Dermatology – outpatient
- Rehab center – inpatient and outpatient
- Dentistry – outpatient
- Ophthalmology – outpatient
- Endocrinologist – inpatient and outpatient
At Tampa General, transplant recipients are advised that almost 100 percent of patients will suffer at least one episode of rejection that will require hospitalization. This makes planning for your recovery every bit as important as planning for your transplant.