- The miracle of a new heart
- Help prepare you for the surgery
- Attend to your recovery after the transplant
- Follow through during post transplant
Those four objectives require you to comply with the center’s heart transplant guidelines while you are waiting and after you are transplanted. Strict compliance is mandatory.
The success of your transplant will be directly related to your commitment to the center’s policies regarding your wait and your recovery. You will log some serious in-patient days and undergo regular testing including catherdizations, biopsies, numerous blood draws, psychological conferences, countless x-rays, cat scans, MRI’s and other procedures.
To find the best heart transplant cwenter for you, consider these steps:
- Contact your health insurance provider and know your options.
- Ask the insurance provider if you can “multiple list.”
- Verify that the centers you like will accept patients who are multiple listed.
- Research all available centers
- Research the history of the transplant program.
- Reserach the attending cardiologist
- Reserach the surgeon’s history
- Research the connected departments
- Consider the location. Will it work for your personal support team?
- Determine any limitations the center has, such as age.
- Procure and read each center’s transplant guide.
Yes, finding the best heart transplant center is extremely important. In my case, my private health insurance carrier permitted me to go “out-of-network” for my transplant. This meant that I could select the heart transplant center of my choice. I made the wrong decision at first, but had the flexibility to make a change when it became apparent that I was not likely to receive a new heart at Columbia Presbyterian Hospital in New York.
The first two steps in selecting your heart transplant center are to contact your health insurance provider and have a frank discussion about your health condition and what options your carrier provides in terms of the selection of a transplant center. Your health plan may not permit the kind of flexibility that I enjoyed.
When you first contact your insurance provider, they may not be up to speed on the gravity of your situation. They may request information from your cardiologist or contact the physician directly. Assuming your health meets the carrier and the center’s qualifying criteria, your options will be explained to you. Your carrier may have a working relationship with a specific transplant center.
If not, they may have designated “centers of excellence” where your insurance will be honored. So, the first step is to have a fact-based discussion about all your options with your insurance provider. A second step is to ask the provider if you have the right to “multiple list”, meaning be on the transplant wait list at two centers.
Many insurers have provisions for multiple listing. However, the rule of thumb is that the carrier will want to eliminate dual expenses for the same service. The one-week application process consists of numerous, expensive evaluations about everything from your pulmonary capacity to stress testing, X-rays, cat scans and many other tests. The insurance carrier may only approve you for dual listing if the centers both agree to share information about your case.
Thankfully, my insurer worked closely with me. I was assigned a caseworker who answered all my questions and on occasion shared some generic experiences with me. When Columbia Pres received 50 percent of the hearts they received the previous year, the wait list swelled to about 190 patients. In their best years, Columbia was transplanting about 100 patients per year.
When my ejection fraction sunk to wait list-qualified numbers, I pursued transplantation. The physician that referred me to Columbia Pres, Dr. Mehmet Oz, the noted author, TV host and heart transplant surgeon, suggested that I multiple list. At first, I stuck with Columbia, but as my concerns arose, my insurer agreed it was time to seek other options and they agreed to pay for a second round of admission tests. For that outpatient evaluation the charges surpassed $20,000.
If your insurance carrier agrees to multiple listing, you must then ask the respective centers if they accept patients who dual list. Tampa General made it clear from the beginning that they do not accept patients who are multiple listed.
When I sought a transplant center, I sought a transplant team that performed transplant surgery on a very regular basis. I wanted to know how long the transplant surgeon had been on the job at that center. I also asked about their previous assignments and inquired about the cardiologist’s track record with transplant patients.
I was impressed with Tampa General’s transplant experiences and was gratified to learn that Dr. Cedric Sheffield came to Tampa General by way of the Cleveland Clinic and Duke University. I did not have to hear anymore.
My cardiologist, Debbie Rynde-Hoffman, is respected by staff and patients as a cardiologist with tough love with a great track record. In addition to their well-deserved reputations, Tampa General was designated by OPTN as one of the country’s 10th busiest heart transplant centers.
In 2011, U.S. News and Business Review chose Tampa General as one of the nation’s top 50 heart transplant centers. There are 251 transplant centers nationwide. Tampa General was the first hospital in Florida to perform a heart transplant way back in 1985.
A physical inspection of the facilities confirmed that 77,000 square feet in the hospital are dedicated to transplantation services. There are 47 pre-operative and post-operative rooms with private bathrooms. Equally impressive was the hospital’s experienced nursing and caregiver staff.
Because I had been at Columbia Pres, which is another transplant center with well-deserved credentials, I was not sure how Tampa would measure up. To be candid, I liked the staff and the cardiology department at TGH from day one. The receptionists go out of their way to make you comfortable. The nursing staff is professional and efficient.And, there is an overall sense of achievement in the program.
I very much liked the fact that Dr. Hoffman performed catherdizations and biopsies. She has an economy of motion and a strong, but supportive bedside manner. At Columbia, I never saw the same person twice.
Situated on prestigious Davis Island, Tampa General features panoramic view of bays and waterways that make it hard to feel badly.
In choosing a transplant center, I liked Dr. Hoffman and Dr. Sheffield from the beginning. I also liked all the nurses and attendants that walked me through the paces in the application process when I met sociologists, bookkeepers, dieticians, infectious disease people and the transplant psychologist Dr. Kristin Kransnoble.
My experience with the infectious disease department was not good. I still hold them responsible for allowing the aspergillius infection in my lung to spread to my spine, necessitating life or death surgery, which TGH failed to detect.
So choosing an active center with experienced caregivers is critical to your success, but it is up to you to perform due diligence about these factors and then evaluate them.
You also bear the burden of questioning the credibility of departments other than the cardiology department with whom you will interact. My neurology needs were handled by appointment with a TGH collaborator. My dreadful experience with TGH’s Infectious Disease Department may have been expected had I asked the right questions. It turns out that aspergillius infection is a mainstay of the TGH transplant experience.
After researching the center for this information, another big consideration is how the location will work for your support network. Most transplant centers require that you remain in the vicinity for at least two months. You will need round the clock support for 90 days and consistent support for another 90 days. If complications arise, the pressure on your support network could be more demanding.
Part of the TGH appeal for me was the Merasol, where we located a flat and were embraced by the community. There is alot tolike about Tampa, including great weather and lots of flat walking areas. And, the Yankees have spring training at beautiful Steinbrenner Field. Tampa and Davis Island get high marks from us.
One other important consideration is the age restrictions on transplant patients. At Columbia, patients who were not in the program by age 65 cannot be considered. At TGH, the cutoff is age 70.
As I have mentioned before, it cannot hurt to request the survival rate on the table, the survival rate for one year and the survival rate for three years. Columbia fared slightly better than TGH but again the 65 cutoff vs. the 70 cutoff might influence the numbers.
Another recommendation is to obtain the center’s transplant guide and devour the information. I think there is a lot to be learned from these guides. I also think the guides are a reflection of the overall experience at the center. The Columbia Transplant Guide was a work of art.
One last consideration is to evaluate the wait list educational services. While I was at Columbia, we were required to attend forums and seminars every other week. These were invaluable lessons that dealt with so many experiences. It was insightful to see how other wait-listers and recipients reacted and participated in these seminars.
So, there you have my thoughts on steps to find your best heart transplant center. I hope this helps.