I am currently a second year nurse anesthesia student at the University of Pittsburgh who had a wonderful opportunity to work alongside some of the most dedicated professionals I have ever met. I spent approximately 60 hours assisting at the North American Malignant Hyperthermia Registry (NAMHR) in Pittsburgh, PA as part of my Research Practicum. While working there, I gained valuable knowledge regarding all aspects of MH, including its pathophysiology, treatment, and diagnostic testing. The information that I gained will serve to help me confidently care for one of these patients if ever faced with one in my practice.
The ultimate goal of MHAUS and the NAMHR is to completely eliminate death by MH. The Registry serves as a central repository of information concerning the MH status of many individuals and families, whether these individuals are known to be MH susceptible or have had a similar syndrome presenting like MH. Specific identifiers are removed from data collected by healthcare professionals unless consent is obtained for each individual. Another objective of the Registry is to “provide information storage and analysis services to MH diagnostic referral centers for standardization and validation of MH diagnostic testing procedures, including genetic tests 1 . During my time spent at the Registry, I was able to reconcile (look over for accuracy) information included in the Adverse Metabolic or Muscular Reaction to Anesthesia (AMRA) and the Already Known as MH Susceptible (AKA) reports. In doing so, I continued to build upon an already strong foundation with regards to understanding MH. Since the AMRA reports include items such as lab tests utilized during a reaction, treatment given, and patient outcome, I learned a wealth of information in terms of MH treatment applying to both the intra- and postoperative phase. In addition to knowledge gained by reading through reports, perhaps one of the most valuable resources I learned about was the MH Hotline. Prior to working at the MH registry, I did not realize that there was a 24-hour hotline that can be called at any time for emergencies. The hotline allows healthcare professionals dealing with a life threatening MH crisis to work through each crucial minute effectively and with efficiency by assistance from a live expert. Over the past 10 years, the hotline has received nearly 7,000 calls 2 . This unique service allows patients and families to receive the most optimum care during a critical time, and is one that every health care professional who may come in contact with one of these patients be educated on.
As I continue on in my studies and eventually graduate and begin working as a CRNA, I know undoubtedly that what I learned while being at the MH registry will help me to competently care for any patient presenting with this unforeseen event. I have the utmost respect for those who give their time freely in helping to ensure that the mission of the Malignant Hyperthermia Association of the United States is met: “to promote optimum care and scientific understanding of MH and related disorders 3 . The years of hard work by those committed to learning and disseminating knowledge about MH does not go unnoticed. During the hours I shared working with individuals such as this, it has given me motivation to now personally make it my own goal to educate others about these resources as well as share the wealth of information I have gained through my time spent at the MH registry.
Joelle Sabatine BSN, RN, SRNA
University of Pittsburgh
Nurse Anesthesia Program
Class of 2014 – Fall