Cheryl Mercer and our MH Feed the Research Pig  

Cheryl's Story -- 

In 1986, I underwent emergency surgery for an appendectomy. I was living in Iowa City at the time, finishing up college and my parents and fiancé lived about two hours away in Illinois.  I recall telling someone at the hospital that my father had experienced a problem with anesthesia years ago when having a fish-bone removed from his throat.  I didn’t really know any more details than that.  My parents told me they would head to Iowa City and see me after the surgery. (I appreciated a nun coming to my room and saying a prayer for my safe recovery).  The next thing I knew I was waking up, unable to speak because I had a tube down my throat.  I was confused regarding what was happening and wrote on my mom’s hand, “Am I going to die?”  The doctor came in and explained that I had an episode of malignant hyperthermia.  I spent the night in ICU and was discharged four days later. At the time, I did not feel any residual effects of what had happened.  My medical records indicated that just 10 minutes into the surgery, the surgeon recognized that my muscles were cyanotic and becoming rigid.  My temperature escalated to over 106 rapidly, and my CK levels were described as “astronomical."   Fortunately, the anesthesiologist recognized the signs of MH and reacted immediately.

My father sought information about MH and came across MHAUS.  He and I attended our first conference in Minneapolis many years ago trying to connect with others who might know about this rare disorder.  Thinking that my father was the carrier of the MH, my brother had a muscle biopsy with positive results.  My father died in 2000 so we were never able to get genetic testing done on him.  Other family members and I were all tested and it turned out that I have two mutations, my sister has one and my son has one.  Just this year, we decided we should test my mother to determine if in fact I may have received a gene from both of my parents. It turns out that my mother has one known variant for MH, one of the mutations that I have but not the one my sister and son have.  Consequently, we would conclude that my father had the mutation that my sister, son and I have.  My brother has not yet had the genetic testing.

I have experienced “awake symptoms” over the years but they have become more frequent and severe in recent years.  Moderate exercise has resulted in elevated CK levels as high as 10,000.  Muscle cramping and twitching are frequent, and I take Dantrolene as needed.  The wonderful people associated with MHAUS, particularly Dr. Barbara Brandom, Dr. Sheila Muldoon and Dr. Mary Theroux, have been a great resource and support network for my family and me.  I encourage support for MHAUS and the work they do!

As told by Cheryl Mercer

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