Trustworthiness is the most valuable tool when it comes to a doctor-patient relationship. It’s been nearly six years since I encountered the most abusive relationship I’ve known in my life. Before I delve further into my explanation of this “abusive relationship”, I have to explain how I feel about choosing a medical team.
When it comes to a chronic disease, the doctors you choose to make up your medical team should be nothing less than excellent. These healthcare providers are going to be a part of your life. Not too different from friendships, you want somebody who is reliable, responsible, and trustworthy. When you’re looking for a guardian of your health, whether or not they can make you laugh and get your sense of humor is irrelevant. Remember, were interviewing for your health like your life depends on it.
In 2008, I had to choose a new retinal specialist because I started a new health insurance. The retinal specialist that I had been seeing since 1996 did not take my new health insurance. This turn of events led me to her office. This new retinal specialist wrote all her notes by hand. However she did all her treatments by injection.
My first appointment with her was in March 2008. At the time, I had just experienced my first vitreous hemorrhage. Without blinking an eye, no pun intended, she recommended an ocular injection of Avastin. She just met me and knew nothing about my medical history. Three days later, I blacked out when I was driving.
My next appointment with her was in June 2008. Curiously, she offered another injection. This time it was for diabetic macular edema. The vitreous hemorrhage did not clear from the Avastin injection. As she was aware of my blackout from the first shot, this time she injected me with Lucentis. A few days later I had a stroke and spent a week in the hospital.
She came to the hospital after my internist and neurologist called her. She did not mention to them that this injection could have caused a stroke. No worries. As my neurologist was still concerned, he performed a spinal tap. The results from my cerebrospinal fluid came back pristine. My neurologist recommended that I get a second opinion from a doctor who was the director of optometry at a local university.
The next time I saw her was September 2008. I advised her that the neurologist recommended I get a second opinion from the director of optometry. She asked who he had recommended I see for a second opinion. I told her the name. She responded,” I know him. I wouldn’t waste your time. You won’t get to see him but you’ll probably be seen by one of his students.”
I didn’t think much of her reaction at the time. But I never forgot it. Without fail, I still had diabetic macular edema. So her decision was to treat with another injection. This time, she said,”Macugen is much better than Lucentis.” Following my blind faith, I went with her recommendation.
Avastin and Lucentis belong to a class of drugs known as anti-VEGF which are used to treat cancer. Essentially they are chemotherapy. Chemotherapy is a cumulative treatment. This means that the more you get it, the more concentrated it becomes in your body. In hindsight, it makes perfect sense that I blacked out after the first injection and had a stroke after the second. But at this time, I was still unaware of the side effects of these drugs. I was just under the impression that she was doing the best she could for my eye health. I feel so stupid now.
After the stroke, I had gone to physical therapy for a few months. Part of the brain that regulates balance was affected from the stroke. My ability to track items with my eyes was affected, as well. Having gone through extensive testing, CAT scans, MRIs, and dozens of blood tests the only thing that was clearly failing in my body were my kidneys. Under the delusion that my doctor would never make a poor decision for my health, I just believed this stroke happened because of my kidneys failing.
This is where the story gets very interesting to me. My next appointment was in December 2008. From what I can remember, I hadn’t noticed an improvement in my vision. In fact, it continued to get worse since I began seeing this doctor. The interesting thing on this appointment is that she was going to give me an injection of Macugen but learned that they didn’t have one in the fridge. So she said everything looks good. So my “Christmas present” was to go home and enjoy the holiday. There’s a reason I didn’t get the injection and it wasn’t because of the medical necessity.
The Macugen injections she gave me were based on a patient assistance program called the Macugen Access Program. Every time she gives me an injection, she can order another dose of Macugen to issue. Whether it’s for me or somebody else is irrelevant. Every appointment, she’d ask her office manager “do we have one in there for Allison?” Thank goodness that she didn’t have one for me. This had nothing to do with the spirit of Christmas. It was green but didn’t smell like a Christmas tree.
My next appointment was in March 2009. Sure enough, she gave me a shot of Macugen. Remember what I said about the cumulative effects of chemotherapy? The last injection of Macugen I had received was in September 2008.
My next appointment was in June 2009. This was the straw that broke the camel’s back. On this appointment, she gave me an injection of Macugen. Sure enough, days later I was in the hospital having suffered another stroke almost a year after the first one. This hospital stay was not one week. This hospital stay was one month, followed by years of physical therapy, speech therapy, and occupational therapy.
So as my kidneys and vision were failing, I couldn’t help but revisit the details of each and every appointment with her. As soon as I got out of the hospital, I requested a copy of my records from her office. Something seemed off to me when months later I hadn’t received my records from her office. So I took the next step and contacted the OPMC or Office of Professional Medical Conduct.
Within a few weeks, I’d received all my records from her office. Strangely enough, they were not handwritten like they were when she saw me. They were all electronic medical records. Also, there were several informed consent signatures in my file. I had never seen any of these informed consent forms. The package that the OPMC received contains sanitized records and forged signatures.
Furthermore, the medical records provided to the OPMC indicated falsified appointments where supposedly I had received injections that never happened. There are so many details to this story that are falsified in her office records that it makes me feel violated. My visual health in the 15 months I saw her declined consistently. I dismissed it as my kidneys failing but now I know better.
The important thing is that today I’m alive and well. I know what I can do to make the most of my experiences in life. I’ll always be sad for trusting the doctor who hurt me, over and over again. The bright side is my health, my loved ones, and my unwavering hope to keep learning and sharing every day to improve life for others. Even when there are dark clouds in the sky, the sun will shine again.
I hope my YouTube video explains why I’m happy about my bloody eye. With good reason, my new retinal specialist heard me out and made the decision to treat me with Ozuredex. Thank you for letting me share this story.