Ask the Patient Leaders: Finding the Right Fit for Your Care Team
Receiving a diagnosis for any condition, including a heart condition such as heart failure, can be difficult. New questions about the condition, and about you living with the condition, may flow through your mind before a diagnosis, immediately after, and even months and years later. It is important to make sure that you find the right fit when it comes to your care team so you can be comfortable asking questions and trust that they will help you throughout all the chapters of your journey. It is also okay to have your team of doctors, or your overall healthcare team, evolve with you as your needs change.
We asked our patient leaders, "How did you find the right care team and/or doctor for you? Have you ever gotten a second opinion or changed doctors because they had not been the right fit?" Here's what some of them shared.
Finding the right fit: My heart failure care team
Validation and advocacy
"I found the right care team by choosing not to continue going to the same hospital that was not managing my symptoms. When I developed blood clots, I went to a different emergency room than the one I was frequenting. The physicians there sent me to advanced heart failure specialists. I knew that I was in better hands when I asked the new physician if I could stay longer than the hospital wanted me to because I was still in pain.
She validated my concerns and made sure I was not prematurely discharged. I continued to see this physician, and she ordered a full workup to determine what, if anything, could be done to improve my health. Her efforts put me in the hands of a world-renowned surgeon to implant my left ventricular assistance device (LVAD or heart pump).
She also advocated for me to get a second opinion for a heart transplant evaluation at one of the nation’s top medical centers. The transplant team to which I was referred was phenomenal. They performed tests that no other cardiologist even mentioned and further refined my medication protocol. As a result of their efforts, I am in recovery (even though my heart pump failed and was recalled). More recently, I changed doctors again because the local cardiologist who took over my care at home following my pump failure (yes, he took it over, I didn’t choose him) was not a good fit." – Latoya
Referrals from trusted professionals
"I often find the best doctors by asking for a referral from a doctor I already trust. I am lucky that my primary care physician is aware of a lot of great doctors in her network, and I usually do well with anyone she refers me to. That is how I built my cardiology team – she referred me to my cardiologist who then referred me to my electrophysiologist. Even with a great care team, however, I was not shy to seek a second opinion from another electrophysiologist. In retrospect, I think I was hoping for better news (that I would not need a specific test done), but the second doctor just confirmed what the first had told me. It still felt reassuring to hear the same opinion from 2 different doctors." – Lisa
Changes over time
"I have gotten a second opinion and ultimately changed doctors after feeling that a team was not the right fit for me. In fact, feeling like a number led to a Google search that landed me with my current care team. However, as with most teams, there have been changes through the years.
Oftentimes healthcare professionals will change positions, and networks, and even move to new cities. That was a tough learn for me as someone adapting to life with a chronic illness.
Building a relationship with a physician, nurse, or anyone on your medical team is personal. After all, sharing some of the most private and sensitive parts of your life with others isn't easy. Regardless of their profession, they're still human. So, when those relationships are fractured that can be difficult. I had to learn that these individuals didn't belong to me or their careers. They're also individuals on their own journeys. Although their departures are difficult when it happens, I cope with it better today than in the past.
My current team has evolved through those transitions. I'm thankful to say that I'm building new relationships with some of the newest members of my medical team. They appear to be just as passionate about my care as the last group. That matters! I feel I have a team comprised of physicians, nurses, and coordinators that care, listen, and understand, which is a vital part of my care." – Tina
Have you found the right fit?
Our patient leaders shared some of the ways they ended up finding the right doctors or medical professionals to be on their team, and many mentioned that second opinions can be important. Changes to medical teams happen for various reasons, but it is important that you get along with and trust the people on your team.
Do you have a story about finding the right doctor(s) for your heart failure team? Are you satisfied with your current team, or are you seeking opinions? We would love to hear more about your experience. Share your story by clicking the button below.
Have you had a heart transplant?