I have spent three weeks in Albany hospitals. Two of those weeks were at Albany Medical Center. Albany Med used to be a heart transplant center, but due to some irregularities transplants were suspended before I entered end stage heart disease.
Staying at Albany Med gave me the opportunity to connect with a local cardiologist with transplant experience and the expertise to work with Tampa General to help identify and stabilize my current illness which had all the symptoms of rejection but which turned out to be something very different.
For the treatment I received at Albany Medical Center, there are not words to express my appreciation for the care of Dr. Philbin, Dr. Fein and the team they assembled on my behalf. The way this situation unfolded reminded me of the importance of building a reliable heart transplant team.
When an applicant for heart transplantation is accepted, they have already undergone a screening experience. During the screening, the applicant will meet with the cardiologist, a cardiovascular surgeon, a neurologist, a dietician, a psychiatrist, infectious disease experts, social workers and financial advisers.
The applicant will also receive a heart transplant procedure booklet which must be read. Much of the information in this booklet is ongoing and is an especially valuable resource for medications used before and after the transplant.
This week reminded me of the need to have a team and it reminded me of the need for each team member, including the organ recipient, to understand their role. In moments of tension, the importance of the team’s ability to work together is paramount.
Since being listed at Tampa General Hospital, it was clear to me that my team leader, the person that would make the final decisions and have input in every decision affecting my care, was going to be my cardiologist, Dr. Hoffman. The good doctor and I began our relationship on tenuous ground. Once she made her expectations clear to me, I got in line. Dr. Hoffman’s expectations were gospel.
Quite simply, my mandate was to read and understand the TGH Heart Transplant book and be 100% compliant. That meant compliant with diet, the most difficult lifestyle change, exercise, liquid intake, rest, strict medication compliance and many common sense lifestyle changes like smoking and alcohol cessation.
This is not a high school test. This is about prolonging your life with an organ that thousands of people would like to have. If I were non-compliant, Dr. Hoffman would not be my cardiologist. It was as simple as that.
In the business of heart transplantation, Hoffman’s demands were certainly just. Organs are hard to come by and if a patient is non-compliant before heart transplantation they neither respect the gravity of the situation nor the magnitude of the gift and they will be non-compliant after transplantation.
This is not on the job training. This is physically, spiritually and emotionally preparing for one shot at a life saving, life changing experience. Patients must decide early if they are willing to take the risks, make the total commitment and ride all the way to the goal line.
In my case, Team Doolittle, consisted of the manager, Dr. Hoffman, the esteemed surgeon Dr. Cedric Sheffield, the TGH infectious disease team, my confidante and emotional pillar of psychological strength, Dr. Krons-Noble, and certain backup teams on demand.
My experience has been unusual and I mean no harm to TGH. But, it seemed to me that when things began to get dicey, Dr. Hoffman’s support network did not hold up. The infectious disease team was quick to analyze, slow to actually listen to the patient and not as committed to the recovery process as was the patient or cardiologist.
At Albany Med, when things were troublesome, every avenue was pursued and Dr. Philbin’s version of Team Doolittle came to play. That team now included another cardiologist, a hematologist, a pulmonary physician, a proven infectious disease group, my general practitioner, a general surgeon, a diligent corps of polite and professional nurses and nurses’ aids. I already count Dr. David Semenov, the noted neuro-surgeon, as a permanent team member.
The point is that these components may come into play at any time, while on the Wait List or after the patient’s heart transplant. At Tampa General, it is the patient’s responsibility to build their own personal support network. In fact, the patient must list the names of domestic support personnel, include their contact information and make sure they understand what they are agreeing to do.
I am very grateful to Dr. Hoffman, Dr. Sheffield and Dr. Krons Noble and to all the Albany team. The person upon whom my illness has taken the greatest toll is Suzanne, my upbeat, scared but absolutely positive third base coach and bride who has changed her life to help me through each reversal.
At night, I sometimes hear her silent sobs. I am often so medicated that I become agitated and those steroids can really sway the mood. While I have been surrounded by many terrific professionals, Suzanne has always been the brightest star. I wish that every heart transplant patient could have a third base coach like Suzanne. My coach has qualities that cannot be taught. For your heart transplant, you will need someone like that.