Heart of a Giant Support System, Part 3: My Medical Care Team
My medical care team, of course, is the best in the world! At the Brigham and Women’s Hospital Heart & Vascular Center, my cardiologist, Dr. Garrick Stewart always tells me ‘only the best for you, Bouba’.
Chronic overachiever syndrome
They are tremendous. I love my care teams. They saved my heart and are allowing me to get so much out of life. From our first interactions, we have had a good relationship, with no exception on the team. I think it stems from the mutual respect and admiration we have for each other. I know that they are doing the utmost best to help me be successful, not only against my heart condition but in my overall wellbeing and life. They know that there is so much I expect to achieve in my life. When I first met with Dr. Neal Lakdawala (known in our home as ‘Doctor cool shoes’), he diagnosed me with chronic overachiever syndrome.
More than just my caregivers
My medical care team understands that I have so much to live for and they can count on me to do the right things and communicate when needed, whether the issue is big or small. They believe that I am doing everything to stay alive, to get stronger, and to be better at the jobs I need to do. I believe these are some of the things that drive me to be the best patient I can be and lead my health and wellbeing. The nurses, doctors and other health workers become more than just my caregivers, more than just the medical professionals that I know are the best at doing their job.
They care 24/7
Dealing with chronic illness required a different approach to patient-physician relations. I believe they have mastered this at the Heart and Vascular Center. They have a special way of doing things there, and they continue to improve how they do things. This is my ‘expert educated patient’ belief and not hard to prove. They have the right attitude and the right approach, and I think they care 24/7.
The level of care, the quality of attention, of presence is just great. They always go beyond the clinical aspects of things, which is crucial when you're dealing with a chronic illness. Because there's only so much medication and surgeries can do. My team helps prepare and process situations to the best of my ability and when that is not enough, they’d step in or guide me to the right specialists or care structure such as dentist or psychotherapist, physical therapist, or hematologist, etc.
In happiness and joy
They would answer all the questions or concerns my family may have, promptly – in person, via phone, or even emails. All that makes it easier for me to adhere to the prescriptions and respect the restrictions around exercises or hygiene of life. We check in with each other regularly and continue to build up and share with other patients, as we go.
Beyond my medical care, they recognize and appreciate the efforts that my wife and my family do. My nurse team always tells me that my biggest fortune is the great family I have - my wife, of course, is always commended, and they love our boys. Us being pregnant with the twins a year after my LVAD surgery made it even more special. I think their birth brought a lot of joy and happiness to the team and everyone involved in the process. What better testimony to the success of their work and the powers of technology and innovation than seeing my family and I continue to flourish, in happiness and joy.
My medical team regularly supports my fundraising efforts, they always show up at my events, and often with their own families. They connect me to other patients, and opportunities for speaking, interviews, events, and more… They have been my biggest supporters and advocates for helping me tell my story.
More, I even get advice for my social projects and my career planning - Dr. Neal has been particularly valuable in these regards. We met a few times for coffee and lunch. He often gives me feedback when I need it. He is fun to talk to and he always makes great suggestions and recommendations. He connected me to another great patient advocate like Wendy Borsari. Wendy and her team invited me to be the welcoming speaker at the 2nd Affairs of Heart Conference on Cardiomyopathy in Boston, May 2018.
Relationships make a big difference
In closing, I strongly believe that my relationships make a big difference. And I can go on and on, about my pharmacists, or the medical equipment and supplies manager, patient coordinators or receptionists, facility managers, or many others at my care centers.
What type of heart failure have you been diagnosed with?