Managing the Doctor-Patient Relationship and Creating a Team, Part 3
At the end of 2017, I realized that I needed to change my rheumatologist. The time leading up to that decision leave my rheumatologist of 14 years. That rheumatologist and I had our differences. I felt that my stressful life at the law firm plus my disagreements with that rheumatologist over treatment activated my most recent flare. We were even in dispute as to whether my lupus was active or in remission. This doctor often relied on lab work to determine the existence of a lupus flare instead of looking at my symptoms which included night sweats, dizziness, lightheadedness, and the heat flashes were a result of lupus flare or a new diagnosis.
By the end of 2017, my rheumatologist placed me on steroids to see if it would improve my symptoms. The steroids reduced some pain but made other symptoms worse. I came to the conclusion that I was developing given the rise in flu cases that year. Don’t think that I completely lost any hope in this doctor. After all, he connected me with my wonderful nephrologist, gastroenterologist, and my ophthalmologist. He is smart and he helped me create the team of doctors I have today, but his superiority complex and his arrogance finally got in the way.
Lupus health scare
One evening in November 2017, a month after my last rheumatology appointment, I got a call from my doctor's nurse. She told me that I may have cancer of the bladder or of the kidney as a result of prior Cytoxan treatments. I was furious with the fact that this doctor, my rheumatologist of 14 years did not call me directly and that he waited a whole month to tell me that I may have cancer.
After receiving this message, my urologist and nephrologist ordered tests. The winter of 2017 was a really contagious flu season. I assumed I had some sort of bug, but not the flu because I got my flu shot over 2 months earlier. Between the second and third week of January 2018, I passed out 3 times. By the end of January 2018, I was confined to ICU fighting septic shock.
Working with my healthcare team
After my release from the hospital, I saw every one of my doctors. The reason that I have a great collection of doctors is that most of them work in or near the same hospital system. It is not the hospital system that connects them, but it is their prior working relationship. If there is an issue about a medication or a concern that needs some of my doctors to put their heads together, it is not unusual for my doctors to communicate by telephone during my appointment. If I am depressed, every doctor is aware. Every doctor knows that my kidneys are damaged so most of them stay abreast of my kidney function. All of my doctors have always been concerned about my health, my home life, my career, my mental health, and me as a whole.
Finding a new doctor
Finding a new rheumatologist was pretty easy given my involvement in the Lupus Foundation of America, Georgia Chapter. The week after I left the hospital, my mother and I searched for a new rheumatologist. I did not need to concentrate on my career, because my health needed to come first. This time I knew what I was looking for. I learned, after going through this ordeal, that I needed to make sure that I had a positive doctor-patient relationship and a functioning healthcare team. Most importantly, I need a rheumatologist who I can talk to about serious matters and not have my thoughts discounted. I also need a rheumatologist who allows me to play a role in deciding my treatment plan.
I realized that I need a doctor who looks at me as a person instead of a number. I need a doctor who examines the body as a whole instead of focusing on their specific field because lupus is a multiorgan condition. I need a doctor who will take into consideration my overall health, both mental and physical health. I need a rheumatologist who has learned how to focus on me instead of his computer or telephone. I need a rheumatologist who works as an extension of my healthcare team and has a good relationship with the other members of my team. Most importantly, I realize that I am the captain of my ship.
Have you experienced adverse side effects to your lupus medications?