As an undergraduate, I participated as a research assistant for a study on dementia. It was mostly data entry and busy work. When we were told we had to volunteer for a research project as part of our research practicum, I thought it would be more data entry. A classmate sent out a message saying the North American Malignant Hyperthermia Registry (NAMHR) was always open to volunteers. It peaked my interest and Dr. Barbara Brandom did not disappoint. She took me under her wing and taught me more than I ever thought I would learn. She really took the time to explain things and gave me important tasks. I learned something every single hour that I worked. It happened to be in my favor that I was also providing anesthesia services at Children’s Hospital of Pittsburgh during the same months I volunteered at the NAMHR, because Dr. Brandom offered her perspective after 30+ years of working as a Pediatric Anesthesiologist.
One of the most interesting things I learned was on my first day in the office. I was reading AMRA (Adverse Metabolic/muscular Reaction to Anesthesia) reports about cases that had occurred. It took me by surprise when I read about two cases that were completely unrelated to anesthesia. Both of these cases were instead related to heat intolerance. These were fascinating to read because it makes you look at malignant hyperthermia (MH) in a whole new way. This is why research in malignant hyperthermia is so important. It is so rare, an anesthesia provider may see it once in their career. This is the reason for the MH Hotline supported by the Malignant Hyperthermia Association of the United States. Experts are there to answer any questions about the disease and the steps to take to treat it. There is also a large poster that most operating rooms keep with their MH cart that lists the step by step treatment.
Some of my important tasks included listening to calls to the MH Hotline. These were always interesting whether it was an MH case or not. As a future CRNA, listening to these calls taught me the logical steps to take when diagnosing an issue in the operating room. Transcribing the calls makes one think what they would do for this patient. You also think about your diagnosis for this patient. The calls usually left me wanting more information about what happened to that patient. I gained the confidence to competently treat an episode of MH. Although most cases are not textbook, I feel I could identify the problem as MH or not.
Another valuable tool I gained while I was working at NAMHR was the ability to educate patients about the complication. In my short time as an SRNA, I have had two patients who indicated that they were MH susceptible. I now would recommend that the patient fill out an AKA form to participate in the registry, found on the NAMHR’s website: https://www.mhaus.org/registry, under the ‘downloads’ tab. Future strides in MH research depend on the patients’ participation. Unfortunately, most patients learn about the disease after they have an MH episode and obtain genetic testing or a muscle contracture test.
Sabrina Wilt, RN, BSN, CCRN
University of Pittsburgh School of Nursing
Nurse Anesthesia Program
Class of Spring 2016