Beth Luedke and Family

Beth's Story: 

My story of MH is not profound. It feels profound. As I read through the other MH stories, I am not special. But if my story saves a life or educates a medical professional then my story is worth sharing.

My story begins on July 8, 2004. The day my daughter was born. Her birth was not traumatic in any way. After 12 hours of labor I opted for an epidural and she was born six hours later. Within several months of her birth, my muscles hurt so badly that I could not walk up or down a set of stairs. One day my husband asked me why I hadn't gone to the doctor yet. My answer? "Because I know something is really wrong." Thus started our 8-year journey. The doctors did tests and tests and more tests and eventually two muscle biopsies. I saw two Rheumatologists, a Neuromuscular specialist and even spent a week at the Mayo clinic. All that came from it was a lot of blank stares, random bad drugs and the acknowledgement that my CPK was elevated into the 1000's. I gave up and believed I would just live with it the rest of my life. I have since seen my medical records from my GP at the time - several of which noted “patient is psychosomatic.” This saddened me deeply.

In Winter of 2012, it is decided that I have a torn labrum and will need hip surgery. We prepare for me to be on crutches for 2-3 weeks, not able to drive for 3-4 weeks and my mother-in-law comes to stay with us for however long we need her. She has training as both an RN and an RT, so she is equipped to help my husband take care of me.

My Orthopedic Surgeon is overly meticulous. To the point that he requests (and gets) a specific anesthesiologist to attend his surgeries. The day of my surgery is no different. As I am in the OR prep area, the anesthesiologist and I joke about the fact that he's never had to intubate anybody, but I still had to sign the paperwork saying he might damage my teeth if he intubates me in an emergency. I sign the paperwork, they wheel me away to the OR and the anesthesiologist assures me he'll see me again in 5-6 hours in Recovery. Hours later, I wake-up in ICU and I hear a nurse telling me not to panic, but I've been intubated and somebody will be here to remove my breathing tube soon. As I fade in and out, I hear my anesthesiologist asking when the RT will be there to remove my tube - he's adamant that it be now and I can hear the agitation in his voice. I am trying to think through the fuzz and I keep thinking I'm not supposed to be in ICU, I'm supposed to be in Recovery. And then my anesthesiologist is there and he's removing my breathing tube himself. As I fade away, I know that things did not go as planned.

When I wake up again, they've allowed my husband to see me in ICU, but my throat is so sore I can’t talk to him. He gets me a piece of paper and a pen. I write, “What happened?” But he won’t answer me. Or maybe he can’t answer me. But I know something bad happened and I am persistent. I finally think to ask him how long the surgery took and he tells me 2-1/2 hours. This is how I know things did not go well. Before I drift away again, I ask him to call my brother before he calls my parents. I would like to have my brother on the phone when my husband calls my parents to tell them things didn’t go well. I am not sure why I ask this, but I feel that my brother will be a calming presence on the phone. I am also confused by the nurses and doctors asking me about family history of surgery and anesthesia.

Four days later, I am finally moved from ICU to the Orthopedic floor so that I can start recovery from my hip surgery. I have learned that they feel strongly I have a Genetic Disorder called Malignant Hyperthermia. I have learned that I nearly died on the Operating Table. I have learned that the surgeon, the anesthesiologist and the MH Team at the Hospital in Denver saved my life. I have learned that I have a lot to learn.

In the year following my surgery, I had the genetic testing done for MH and my “usual” muscle aches came back. Genetic testing confirmed my MH and I spent countless hours on the phone and communicating via email with Dr. Brandom from MHAUS. Dr. Brandom finally suggested I try a daily low-dose of Dantrolene for my muscle aches and cramping. It worked and continues to work.

As I write this on the sixth anniversary of my surgery, life is good. We know that stress and airplane travel triggers my muscle cramping and pain. We know that I need to be well hydrated and careful not to overheat. We know that a daily low-dose of Dantrolene works well for me. I have found a GP who has taken the time to know MH and other related issues that are specific to me. I have a Neuromuscular team in place that has been very supportive. Moving forward, we will continue to learn more about me, my MH and we will continue to share in the hopes that others will learn from my experiences.

NOTE: Because MH is 100% inherited and descendants have a 50% chance of having it, my daughter had the genetic testing done in 2014 and tested positive for MH. Looking back through the years, I could have guessed this outcome. We can name 2-3 incidents where she overheated, started throwing-up and got a migraine-like headache. We are lucky it was not worse. Today she wears a Medical i.d. bracelet and we have doctor orders in place at her school, sports teams and all summer camps. These orders specify outdoor temps which exclude her from activity and very specific emergency plans should she overheat. Thank you to MHAUS for providing guidance through the entire process!

As told by Beth Luedke

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content.