Returning Patients
One of the most exciting things about this summer is reconnecting with patients that I met either three or four years ago. Some of the patients have undergone successful surgeries in the meantime, regaining use of their hands, backs, and jaws. However, more of the patients I have seen are those who are still suffering from their various maladies that I was first introduced to years ago.
On Saturday, a patient came to Rick's clinic who I first met in 2008, briefly described in this post. "Blayne", as we'll call her, was a beautiful 17 year old girl at that time who suffered from a debilitating neuromuscular disorder. She was confined to a wheelchair, had constant tremors and tics in both her hands, arms, and head, and was dutifully cared for by her loving father. I frequently think of Blayne and her father, the pleading in his eyes as he waited during Rick's neurologic exam, the tenderness with which he lifted her in and out of her wheelchair, and the obvious devotion and love exhibited when I saw him every day tending to his daughter's needs. I will never forget thinking for hours on end about this girl trapped in a body that refused to obey her command but left her brain and emotions completely intact.
During that initial visit, Rick considered the diagnosis of Wilson's disease (a disorder wherein the body fails to metabolize and dispose of copper leading to severe neurologic disability and liver failure), but the tests were negative. The only thing Rick could tell her was, "I'm sorry, I don't know what you have, but I can't do anything to help you." At some point after I had left, Rick gave Blayne an anti-seizure drug that apparently helped.
Blayne returned to the clinic this week. She was rolled into the examining room by two unfamiliar individuals, but I immediately recognized her. Her sharp eyes and striking face brought on a wave of emotion that was unexpected, if only because I never thought that she would live long enough for me to see her again. Her condition had deteriorated from the last time I saw her, but not as much as I would have expected. Her aunt and uncle, the unfamiliar individuals, asked Rick for more of the medicine he had given her before and said that it had worked so well, she had even been able to walk again. I again took pictures of her eyes, looking for a diagnostic Kaiser-Fleischer ring (seen in Wilson's disease), during which time Berhanu, Rick's assistant, told me that her father had passed away since the last time I saw her. I told her that I remembered her from 2008, which brought a bright smile to her face, and then I returned to the examining room. The next few hours were filled with memories of the many times I had thought of her, her father, and their unfortunate predicament.
There are a few patients from Ethiopia that I think of frequently - nearly once every week. These are the patients I never expected to see again for one reason or another, but who possessed some special feature that emblazoned them in my memory. Seeing Blayne, I was torn by the happiness I felt at seeing her again, the sadness in seeing that her condition perseveres, and the helplessness felt by the vast disparity in our respective conditions and the changes we have experienced in the intervening three years. I simply hope she knows that we, Rick and his crew, do care about her, her condition, and her future.
On Saturday, a patient came to Rick's clinic who I first met in 2008, briefly described in this post. "Blayne", as we'll call her, was a beautiful 17 year old girl at that time who suffered from a debilitating neuromuscular disorder. She was confined to a wheelchair, had constant tremors and tics in both her hands, arms, and head, and was dutifully cared for by her loving father. I frequently think of Blayne and her father, the pleading in his eyes as he waited during Rick's neurologic exam, the tenderness with which he lifted her in and out of her wheelchair, and the obvious devotion and love exhibited when I saw him every day tending to his daughter's needs. I will never forget thinking for hours on end about this girl trapped in a body that refused to obey her command but left her brain and emotions completely intact.
During that initial visit, Rick considered the diagnosis of Wilson's disease (a disorder wherein the body fails to metabolize and dispose of copper leading to severe neurologic disability and liver failure), but the tests were negative. The only thing Rick could tell her was, "I'm sorry, I don't know what you have, but I can't do anything to help you." At some point after I had left, Rick gave Blayne an anti-seizure drug that apparently helped.
Blayne returned to the clinic this week. She was rolled into the examining room by two unfamiliar individuals, but I immediately recognized her. Her sharp eyes and striking face brought on a wave of emotion that was unexpected, if only because I never thought that she would live long enough for me to see her again. Her condition had deteriorated from the last time I saw her, but not as much as I would have expected. Her aunt and uncle, the unfamiliar individuals, asked Rick for more of the medicine he had given her before and said that it had worked so well, she had even been able to walk again. I again took pictures of her eyes, looking for a diagnostic Kaiser-Fleischer ring (seen in Wilson's disease), during which time Berhanu, Rick's assistant, told me that her father had passed away since the last time I saw her. I told her that I remembered her from 2008, which brought a bright smile to her face, and then I returned to the examining room. The next few hours were filled with memories of the many times I had thought of her, her father, and their unfortunate predicament.
There are a few patients from Ethiopia that I think of frequently - nearly once every week. These are the patients I never expected to see again for one reason or another, but who possessed some special feature that emblazoned them in my memory. Seeing Blayne, I was torn by the happiness I felt at seeing her again, the sadness in seeing that her condition perseveres, and the helplessness felt by the vast disparity in our respective conditions and the changes we have experienced in the intervening three years. I simply hope she knows that we, Rick and his crew, do care about her, her condition, and her future.
Comments
What would drs in the US do for someone with Blayne's symptoms?
I wish he were willing to take this case on with enthusiasm, but without a diagnosis/treatment on the horizon, I can understand his hesitation. Rick is already overwhelmed with his spines, hearts, and cancer. I don't know if he can/wants to handle brains too.