One of the unique aspects about Dr. H was her association with the hospital's neuromuscular disease (NMD) clinic. She was the only pulmonologist associated with the clinic and worked every day with folks with NMDs. She told me most of the patients in the NMD clinic had ALS. The other patients had various NMDs including Mitochondrial Disease. Dr. H was very unfamiliar with Mito; so, she requested the neurological team from the NMD clinic consult on my case. She told me she did not feel comfortable treating me without having guidance from physicians more knowledgeable about my condition.
The neuro team was amazing. The lead doctor interviewed me and asked which supplements I took. He quickly was able to tell me which supplements helped me and which symptoms most severely affected me. I was shocked and dumbfounded by this man's knowledge of Mito. He knew more about Mito than anyone I had ever met. He told me I most likely had a defect with complex II in the mitochondrial electron transport chain. He told me why certain supplements would not work and why some supplements were absolutely essential for my condition. He ordered a number of blood tests which further confirmed I had Mito. I wanted with all my heart for this doctor to be my neurologist. Unfortunately, this was not meant to be.
On my last visit with the neurologist, he explained, "In the neuromuscular disease clinic, we have mostly ALS patients. Approximately 90% of our patients have ALS. The other 10% are a hodgepodge of other neuromuscular conditions. We do have a number of Mito patients. But most of our Mito patients are mildly affected. Most of our Mito patients are in their late 50's or older. These patients find it more difficult to do their daily activities. They have fatigue which makes it more difficult to get through their day, but mostly, it is nothing which severely affects their lives. They just have to take time to rest when going between activities. Unfortunately, your case is very complex and severe. Clearly with your respiratory failure and severe muscle impairment, this is something which has drastically altered your life. You can no longer do most actitives of daily life. Your condition will likely shorten your life. Your case of Mito is the most severe I have ever seen. It is far too complicated for my team to treat. You need to find care elsewhere."
I was very grateful for this man's honesty, but his words broke my heart. I so desperately wanted to have a doctor with his knowledge. I so desperately wanted to be part of a NMD clinic in which there were multiple departments working together to treat the patient. What a tremendous blessing it would be to have all my doctors working together, to have all my doctors know each other and to have all my medical records easily accessible to all my physicians. But, this dream will just have to remain a dream.
When Dr. H read the neurologist's report and had a conference call with the neurology department, she learned I was not going to be accepted into the NMD clinic. With this information, she sadly informed me that she did not feel comfortable treating me without the guidance of the neurology team. She told me I was welcome to follow-up with her, but she suggested I try to find someone else with more knowledge about Mitochondrial Disease. After a week in the hospital, I was armed with some very valuable information about my respiratory failure and Mitochondrial Disease. Dr. H and I parted ways, and I sought care elsewhere.
A year and a half later, I was admitted to a hospital a short stone's throw from the hospital where Dr. H practiced. The heater on my ventilator abruptly stopped working. I needed to contact my durable medical equipment (DME) company. I looked up the company's information online. I saw when doing a Google search, the company had a Facebook page. Curious, I opened their Facebook page. On the company's page, there was a tribute to Dr. H. It had angel wings and said, "We will miss you." In shock, I scoured the Facebook page for more information. I found another post which stated Dr. H had passed away seven weeks ago. The hospital where Dr. H had worked for many, many years had just had a memorial service for her the week before. I was absolutely stunned! How can this be? She was so dedicated to her work. She was so devoted to her patients.
I called my DME company to arrange for a new heater to be picked up by my mom. When my mom exchanged the heaters, she inquired about Dr. H. The respiratory therapist said, "Dr. H died in her sleep. It was quite a shock to all of us."
Upon hearing how Dr. H died, I found it apropos. To the physician who never stopped working, to the doctor who never seemed to leave the hospital, she was now finally resting. "We give thanks to You, O LORD, for this wonderful servant. May she be highly praised for her dedication and devotion to helping so many folks fight to live with NMDs. Amen."
Link to Part One click here
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