This March, when Lydia was in the hospital, she had a seizure and ended up in the ICU. Mom called me while I was finishing something up, so I came home to go with them to the hospital, an hour-plus drive away from them during Southern California rush hour. When we got there, inexplicably, they were taking in all the medical information again, even though she’d been on the same floor, a hallway and a half away. I was shocked and asked them if they wanted me to go get her file from around the corner. No. So, I said I wanted to talk with the ICU doctor who’d seen her. And I think the ICU staff was shocked that I insisted on speaking to the doctor. I admit I pretty much yelled at him because after about 2 hours of not knowing if she was going to live, I was a more than a little freaked out. And then he looked at her records while we were on the phone and said, “That’s not the way we’re supposed to treat people.” He took an active interest in learning about FTD, helped by connecting us to resources we would have no idea existed, forwarded information on the illness to me that when I sent it to my mom, she commented, “Wow, it’s like he’s treating us as through we’re peers.” Who is this hero? Dr. Tim Stacy
This hospital also had another hero, who met Lydia a few days before this ICU event: her current hospice doctor. When I asked the hospital for a hospice evaluation, they had this doctor evaluate her. When she called me, she said Lydia was a hospice patient. I said was it because of the FTD? She said “Yes, FTD is always a hospice diagnosis, because patients will not get better.” I asked her if she’d ever treated patients with FTD, and she had: 4 in her own medical practice, and 2 prior to Lydia who came to her as hospice patients. As far as I am concerned, she’s the doctor who has had, by far, the most experience dealing with patients in my sister’s situation of any doctor she’d seen before or since. Although she was finally diagnosed after 30 months of searching for what the problem was, AFTER she’d gotten on Social Security Disability (too late for the compassionate allowance), the diagnosing doctors said talk to the local neurologist, and her other doctors didn’t cross pollinate, so she fell through the cracks in a way, until June, when this doctor helped us get her out of a terrible situation and under her own care. Who is this hero? Dr. Alina Lopo
Thank you both, from all of us.