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Deb Rogers

Posted By Administration, Monday, August 3, 2020

Deb’s Story….

When I was 16 years old, I went in via ambulance with suspected appendicitis. On arrival at the hospital, they admitted me for observation at first. After all the tests it was decided that my appendix needed to come out. They put me under using the suxamethonium gas. Only after a few minutes of being under the anaesthetic they found that I was having an asthma attack. After they treated that, they found my appendix had nearly burst and then my vitals, including body temperature, heart rate and blood pressure, were starting to rise. The general surgeon at the time was baffled and couldn't figure out what was happening. I was lucky to have a theatre nurse on at the time, who had been at the hospital for 20 years. She said to the surgeon, “oh my god! Isn't it hyper something?” as she couldn't remember the full medical name it was called. That's when the surgeon replied “oh my god, it's malignant hyperthermia! Somebody get the MH kit.” When they found the MH kit it was realized that the medication to reverse the anaesthetic was out of date by 12 months. The surgeon said if we don't use it, she will be dead anyway. I'm very lucky that it did work and improvement started. At this time however, my body had gone through a lot of trauma. First an asthma attack, then my appendix nearly burst, then my MH episode. They got my appendix out and closed me up but they wanted to reopen the incision and packed ice internally to cool me down as I reached the body temperature of 42.7 C* (108* F). They put me into an induced coma, I was packed in ice, I had three drips going to my heart and there were tubes going everywhere. I was in the ICU for a week. My urine was black because my organs had been cooked. The surgeon said that if my urine didn't clear up, I would need a kidney transplant.

All in all, I was in hospital for 30 days. I don't remember any of this as I was sedated or in a coma most of the time. I only know my story because the surgeons, anesthetist doctors, and nurses had a training session and wanted me and my dad to go. Being 16, it was quite unrealistic at the time going into the room seeing all specialists, surgeons, anaesthetic doctors, nurses and other people who were in the room during my MH crisis. They all just kept staring at me and saying “my god, I can't believe you are still here!” I guess being 16 and extremely fit, young, and healthy worked in worked in my favour. The only follow up I've had regarding my MH is a leg biopsy where about 5 cm of muscle cut out of my left thigh to confirm my MH diagnosis - that was performed in Melbourne, Australia. I wear a medic alert necklace at all times.

They always have me first on the surgical list for any surgeries needed. Once I found the genetic fault in my genes, I was able to get blood tests for my 3 boys. The older two boys have tested positive for MH and the younger one has tested negative. However, the anaesthetists in Melbourne have instructed us to class him as positive, just in case. My genetic testing in Melbourne, Australia was free as was it for my son's. We found out that my dad was a carrier of the gene.

As told by Deb Rogers

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Katie Kovar

Posted By Administration, Friday, July 31, 2020


Katie’s Story…

I was only 27 years old when I had to undergo outpatient surgery for a lower spine issue. I was going in to have a laminectomy and discectomy on my L4/L5 vertebrae. My neurosurgeon did an amazing job with the surgery and when it was time to come out of surgery, I experienced what I now know as an MH episode. Thanks to the wonderful anesthesiologist, they immediately recognized what was happening and took the appropriate actions to save my life. While they were rushing around getting ice and the appropriate medications to combat the episode, all I could feel was my body getting hotter and hotter by the second. It felt like my brain was melting. I could hear and feel everything being done to me, but I could not move, open my eyes or communicate in any way. My temperature got so high, even after they put ice everywhere and called my family back to say goodbye, I was already running towards the white light. When I heard the anesthesiologist say I was not going to make it, I was done, I could not live like that.  I ran as fast as I could toward the white light, the gates of Heaven, because I could not take the sheer pain and heating of my body because the ice kept melting as fast as they could put it on. They brought my family back to say goodbye, but my Dad was not ready, he did not accept what they were telling him. He kept screaming my name over and over (even when my mother told him to be quiet) until I heard him and decided I needed to turn around from that white light and see if I could fight this, because my Dad is the best and I didn’t want to let him down. While I still could not move, talk or communicate in any way, I knew everything that was happening to me as they prepped me to be rushed to the main hospital downtown where I spent a week in critical care and baffled the doctors and nurses until they came to the same conclusion the anesthesiologist did. I had gone through an MH episode and if it were not for the anesthesiologist at the outpatient center who knew what was happening, I would not be here today.

I have since gone on to have a lower back fusion the following year with the same neurosurgeon, this time at the downtown hospital and everyone was aware that I have MH. I have also had two spinal blocks with the same neurosurgeon with only local anesthetic because we never want to relive that nightmare again. It was the single worst time of my life and any time I must give my medical history; the doctors are astounded because it is so rare, or they haven’t heard of it.  More training and awareness need to be provided for all medical care staff across the board so they can save another life. I wear a medic alert bracelet now every single day no matter where I go signifying that I have MH because if I can’t talk for myself, someone needs to know how severe of a reaction I have to anesthesia.

Thanks to that amazing anesthesiologist, I am still around today. I even had a hip joint injection last week with the same neurosurgeon (he has become my one and only-my favorite) and later this week, my husband and I will be accepting three foster kiddos into our home to share our love with. All because this anesthesiologist knew what he was doing. I could not be more thankful.


As told by Katie Kovar

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Marie Versaci

Posted By Administration, Thursday, July 30, 2020


Marie's Story....

My story is a hard one to tell because one minute I was okay, and the next minute I wasn’t. The nurses called my husband to tell him to get to hospital because something had happened to me. He was told that I had a fever of 105 degrees and my kidneys had failed and I was aspirating. My doctor and husband sat down with a few other doctors to see if they would take my case. Those doctors said no but eventually they finally found some that would.

I don’t remember anything about this incident. When I first woke up, I thought it was still December 5th, 2001. However, it was actually February 2002. I looked at myself and panicked because I was hooked up to machines all over my body. I also had a trachea and couldn’t talk and had no clue what was going on. The doctors ended up having to put me in a coma because my body would start crashing. I never knew what time of day it was and had them call my husband to come at all hours of the day and night. I couldn’t even remember who anyone was. I was told it was due to the coma and the medications I was on.

One day I was awake and it was scary because I was still hooked up. My doctor and husband told me what had happened but I didn’t understand. I was constantly being taken for tests to learn how to swallow again, therapy to learn to walk again, and to replace ports for dialysis. When I got my trachea out and talk box put in, it was weird. Nurses were coming in all the time checking this and that but I still was medicated to keep my body from reacting to the things going on. The doctors gave my husband permission to bring in my dog. When she came in, I finally felt so loved. We both cried.
I went home in February but it was hard. I had dialysis 3 times a week and a nurse to come clean my wound where I had my surgery done. Unfortunately, I had a hematoma that blew open but they wouldn’t do surgery. It had to heal from the inside out. I was depressed and everything scared me. I only left the house for doctor appointments and dialysis.

Over time, things happened and my husband found it hard to deal with a sick wife. But, in 2004 god sent me a granddaughter and she saved me in every way. So, 19 years later, I have had many medical problems and have been hospitalized a lot for different things. The years have been rough but I’m stronger than I thought I could be. God had plans for me. I’d like to write a book but it’s hard when others have to tell you about your life because I have very few memories.

As told my Marie

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Cara Astolfi

Posted By Administration, Thursday, July 30, 2020


Cara Astolfi’s Story…

In early 1983, when I was 4 years old, I went into a hospital in Fall River, MA, to have my tonsils removed. During the operation, my temperature spiked and the muscles in my body went rigid, indicating a Malignant Hyperthermia reaction. Luckily, doctors had the drugs on hand needed to combat the reaction and keep me alive. You see, that same year, at that same hospital, another little girl had died of the same Malignant Hyperthermia reaction so the hospital was hyper-vigilant. I believe that this prior event saved my life! After the surgery, I stayed in the ICU for 4 days while they monitored my recovery. After being released back home, my immediate and extended families went for extensive testing to see if any other family members had the characteristics related to MH. As an adult I have had 2 minor surgeries, both given with MH precautions and both completely successful.

As told by Cara Astolfi

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Stephanie Baker

Posted By Administration, Friday, June 19, 2020

Uncle Doug

Stephanie’s Story…

Doug Kirk was my mom's youngest brother. He was born with a cleft lip and palate that required multiple surgeries as he grew. Doug was 15 years old when he underwent surgery for a tympanoplasty in 1965.

The doctors in Beardstown, Illinois didn't have an explanation for why his temperature spiked to over 109 degrees. They didn't know how to treat him, so they submerged him in ice. They called anywhere they could think of and the only information they could get was that Doug's temperature was the third highest anyone had ever seen and that he wasn't going to live.

So, life saving measures were discontinued and his death was labeled intraoperative hyperthermia. Years later, after several other family members had bad reactions to anesthesia, we finally had a name for the condition - Malignant Hyperthermia.
I spent 9 years working in the OR with very few side effects from anesthetic gases and I am now an OR nurse educator, sharing my knowledge and passion about the OR and MH with future OR nurses. 

As told by Stephanie Baker

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Harvest Anne

Posted By Administration, Wednesday, October 2, 2019

Harvest’s Story – As told by Harvest’s dad, Richard Brimhall

When Harvest Anne was three she had to have several cavities filled. We originally had planned to have the work done in the dentist office, but the night before our dentist called us and asked if we wouldn't mind going to Primary Children's Hospital. He was worried that having to fill several cavities at one time may be better served in the children's hospital. My wife, Melissa and I were concerned, but we obliged. We took Harvest to the hospital and met the dentist there. He explained that they would use General Anesthesia and that it could take a couple of hours. They took Harvest back to begin so Melissa and I decided to go to the gift shop to get her a little gift or something. We were gone maybe 40 minutes. When we got back to the waiting room, we saw a nurse running around asking parents in the waiting room if they were Harvest's parents. We were like, we are Harvest's parents. She immediately moved us into a small room, closed the door and said, I can't tell you 100% what is happening, but you probably need to prepare for the worst. We were like, what are you talking about? Harvest is here to get some cavities filled. The nurse said, there is a team of doctors working on her and that's all I know. She then told us if we needed to call any family we should do that immediately. Melissa broke down in tears and I was so confused. The nurse ran out and said she would come back when she had more information. 

The dentist finally came out after what seemed a lifetime and explained that he had started on her top back teeth when the Anesthesiologist asked him, Doctor, are you done? Our dentist chuckled and said, no not even close, and the Anesthesiologist said, nope, you're done. He had recognized that her temperature was rapidly rising and he needed to take swift action to save our little girl. Our dentist was fuzzy on all the details but could tell us that, because of the Anesthesiologist, Harvest should be okay. 

A few hours later we were able to go see Harvest in the PICU. It was still terrifying as we still didn't quite know what was happening or why it was happening to her. The Anesthesiologist finally came to meet us and explained that Harvest had an MH episode. He said that in his 30 years of experience this was only his second case that he has seen and he said that was an anomaly. His assistant was with him, who explained that she was studying for a test the night before and had read the smallest paragraph regarding MH and that her instructors and professors said they will probably not see an MH case in their career. The Anesthesiologist asked if we would talk to some professors and doctors from around the country, which we did. 

Harvest spent close to two weeks in the hospital. It was a terrifying time for us and at the same time, it was a time of true miracles.  We had an unbelievably talented Dentist, Anesthesiologist, and his assistant. 

Harvest is 16 now and would love to bring more awareness and attention to how important knowledge of these rare conditions is. Shortly after Harvest had her experience we read of a teenage girl who underwent surgery and died of an MH episode. 


Harvest’s Story in her own words….

My name is Harvest Anne Brimhall. I am a survivor of Malignant Hyperthermia. My experience and my story are ready to be told. When I was three I needed to have some cavities removed from my mouth. The dentist said it was an easy in and out procedure and he could do it in the dentist’s office. The night before my procedure was done my parents got a call from our dentist saying he had a feeling that we should the procedure at Primary Children’s Hospital. The next day I went in and from there it’s all really blurry for me. I do know my temperature was very high and my heart rate was very fast. None of the doctors knew what was happening and they prepared for me to die. Miraculously one doctor had just read up on Malignant Hyperthermia the night before. That doctor saved my life. I don’t know a lot about MH and I live a pretty normal life with it. But I want to share my story and share that even though Malignant Hyperthermia is rare, it is out there. People do have it and people die from it. Spreading awareness is what will save our lives.


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Posted By Administration, Tuesday, April 23, 2019

Kelli's Story...

I had an MH reaction when I was 13 years old while getting teeth removed. Thankfully, I was in the hospital. I was told that it would take 15 minutes and then I would wake up in recovery. Instead, I woke up with a bunch of people around me but I couldn't see much. I was completely frozen and unable to move....I couldn't feel my body, couldn't talk, and I was not breathing on my own (a respirator was on my face etc.…). I kept going in and out of consciousness. I finally completely woke up in recovery and I was fine.

My parents were worried because of the length of the surgery which was over two hours and because they were told that I reacted to anesthesia. The hospital sent a letter home with me which stated my symptoms such as jaw and body stiffness. This was in 1983 and back then, that was it. I went on with my life and forgot about the episode up until 2 years ago when I needed surgery. Luckily I have a friend that is a nurse anesthetist and she advised me to contact the anesthesia department where I needed surgery to discuss my previous symptoms. The providers brought me in and interviewed me about my episode. They took all precautions and I was fine in surgery, I was treated like royalty actually. I did a bunch of research on my own, called people, emailed the professionals on MH and the RYR1 genetic mutation and I was introduced to a doctor at CHOP in Philadelphia. She interviewed me and got a complete history on me about my health and my heat related issues that I have had all of my life - I am relieved to know that I am not a baby and that I really do get hotter than others. She ordered the blood test and it came back positive for not one, but two RYR1 gene mutations; one that was likely pathogenic and one that was uncertain. I was actually surprised and relieved at the same time.....everything makes sense now; all my symptoms such as heat intolerance, not keeping up during exercise, and breathing problems when it is humid. I am happy that I was able to test positive with the blood test.

As told by Kelli

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Patrick Welch

Posted By Administration, Thursday, March 7, 2019


Patrick Welch’s MH Story….


If by sharing my detailed MH story helps anyone understand their situation better, my goal in writing this has been achieved. I am so happy to hear that those who wrote their story have helped us learn more about this crazy rare medical condition. My name is Patrick Welch and here is my MH story…


On a Friday, in the beginning of October 2018, I woke up at 3:00 AM with severe stomach pain. I thought if I switched positions it would go away, but it did not. At 7:30 AM, my wife, Emily, left for work thinking nothing was wrong, just that I might have eaten something that wasn’t the best. However, I still was in pain that was not going away. Around 10:00 AM, I reached out to my wife and mentioned something wasn’t right and I needed to be taken to the hospital. My wife ended up closing the pharmacy where she works at about 1:30 PM. She raced home to pick me up. We dropped of our son and daughter with a friend who agreed to watch them and we rushed to the hospital.


When we got to the hospital, they checked me in right away. While giving my medical history, I mentioned that my dad, brother, and sister all had their appendix removed, so the hospital started there. They ran some tests and did a CT scan. Sure enough, I needed an appendectomy. While getting me ready for surgery, they did another history and asked if anyone in my family had any issues/problems with anesthesia. My response was “no” because I’ve never heard of anyone in my family having problems, not even the family members who went through the same appendectomy. After the history, the staff at the hospital stated that I would have to stay there overnight. I wasn’t the most excited about that but knew it had to be done. I gave Emily a kiss and we prayed before I was taken back, having zero worries that anything would go wrong.


(Everything from this point on is coming from other people’s perspectives of what happened because I don’t remember anything after surgery.)


After surgery, they were bringing me into the recovery room. As I was coming to, still heavily sedated, they asked me how I was doing. I gave them thumbs up because I was still intubated. The surgery was a success! They extubated me and were in the process of going to talk to Emily when I started to have the reaction to the anesthesia. I started to have really bad riggers (shaking and tense muscles) to the point where they needed three people to try and hold my head and neck down so they could re-intubate me. My blood pressure skyrocketed to 200+/132, my pulse jumped immediately to 180bpm, and my temperature went up close to 106°F. The anesthesiologist recognized what was happening and called a Code Blue and an MH crisis. They also had people calling the MH hotline number to get more information on how to effectively treat me. As I understand, they had to call the MH hotline multiple times. Meanwhile, I also went into respiratory failure. When the staff informed Emily of what was going on, she didn’t really understand the severity of the situation; just knew that it was serious. She held onto her faith that everything was going to be okay. After Emily talked to the doctors, she called our friend, Sarah, who is nurse, and mentioned what was going on. Sarah knew instantly that she needed to be by Emily’s side and rushed to the hospital. While Sarah was on her way, Emily called another friend, Drew, who also rushed to the hospital. They arrived at the same time. Drew told me later that when he showed up, there were 20 different people working on me and 4 officers in the room and they were preparing Emily for the worst. After Drew and Sarah got to the hospital, Emily stated that Drew was going to pray over me and everyone paused for a moment. The only sound that you could hear was the person squeezing the oxygen bag to make sure I was still breathing.


After they stabilized me, I was packed with ice and rushed to a larger hospital about 15 miles away that had an ICU, where I was placed. At this point I was still unconscious and unaware of what was happening. We had more friends show up to pray over me again. I was in the ICU for about four hours with Emily and Sarah. Around 1:00 AM, my vitals started to rise again. The anesthesiologist noticed what was going on and politely asked both Emily and Sarah to step out because she and her staff needed to work on me. They called another MH crisis. I was having another reaction and all the symptoms I was having before came back; high blood pressure, rapid pulse rate and breathing, and an increase in temperature. While I was at the smaller hospital, they gave me doses of dantrolene. Now that it was happening a second time, the staff contacted the MH Hotline again and the doctors and anesthesiologists thought it would be a good idea to set me up on a dantrolene IV drip. They also ended up putting in a central line and arterial line to give me different medications faster and to be able to monitor my vitals more effectively.


The next day, Saturday morning, there was something going on with my left arm that Emily noticed. She went to get a nurse and it turned out that the arterial line they put in was causing a blood clot. They said my arm was really swollen and was rock hard. They got that under control with blood thinners. That seemed to be the last of the issues to arise.


As I remember, I was in and out for the next four days, still intubated. I realized something was wrong when in one of my moments of coming to, hearing (because I still couldn’t see anything) some of my friends talk about the Vikings game and how they got beat pretty badly. Hearing that, I was thinking to myself, I was supposed to be awake by Friday night after the surgery but the football game was on a Sunday. That’s when the questions in my mind started rolling.


Then on Tuesday, a different time that I was awake, our friend Sarah knew that I could hear her and asked me if I knew that something went wrong. I nodded my head yes. Then she asked me if I knew what had happened and I shook my head no. She went on to explain what had happened and all the support we had. I don’t know if they could tell but I was feeling very overwhelmed and emotional but thankful we had the friends we had. Being intubated, communication was tough. We tried having me write but my hands and arms weren’t working the best. I finally remember that I knew sign language and I started signing letters and spelling what I needed or was thinking. Every so often, they would need to come in and move/rotate me and when they did, it was the worst thing ever! Still having the tube in my throat, I would have a really bad gag reflex, start coughing and try to reach up and pull out the tube. Thankfully, the hospital staff had my arms tied down. At one point I signed, “no turn” not understanding they needed to do so to reduce hotspots. After they explained that to me, I signed, “how many turns left,” so I could prepare myself mentally for the difficult turns.


They extubated me in the morning on the next day, Tuesday, and it was one of the happiest days of my life. Even though it wasn’t very loud and my throat hurt, I could finally speak! I don’t remember saying I love you or I appreciate you more in my life to the people that were around me and taking care of me through this whole endeavor, but I did.


Staff ended up moving me to my recovery room that afternoon. On Thursday, I started working to get my strength back, doing PT and OT. I was trying to get out of my bed and stay out as much as I could and trying to get my appetite back up by eating A LOT of saltine crackers. They didn’t have too high of an expectation for me and my recovery considering the situation I was in. However, I was able to leave on Saturday, after eight days in the hospital.


Four months later, getting my body back to 100% is a slow process. I definitely have to remind myself some days that I went through a pretty traumatic event and to not get frustrated that I’m not where I think I should be yet. Maintaining a positive attitude, keeping my mind right and being mentally tough has been really important. Most importantly, being grateful and having a heart of gratitude for all the people and things that I have been blessed with over the course of this experience, I think, has helped the most.


I just want to say thank you to all the doctors, nurses, medical personnel, and especially the anesthesiologist who recognized and understood what was happening and took fast action to save my life. I would be remiss if I didn’t give a special thanks to the MH organization (MHAUS) which provides the hotline number and information people need to survive this rare genetic medical condition. I will forever be grateful and appreciative of everything you guys do! Lastly, to my wife Emily: you are one of the strongest and most amazing ladies I know. Your strength is something I aspire to emulate. I’m so blessed to have you by my side through this whole thing and to call you my wife, I love you!



As told by Patrick Welch

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Audra Wagner

Posted By Administration, Thursday, December 27, 2018

Audra’s Story

In 2003, I found out that I was pregnant. At 14 weeks along, the baby’s heartbeat stopped and I had to have a D&C. I had never had surgery prior to this. I had the surgery and went home, the whole time being very sore all over, but attributed it to how one would typically feel after surgery. The next day the pain was getting worse and my mother-in-law convinced me to go back to the hospital. My bloodwork came back off the charts and they admitted me. I knew that the doctors had not seen much of this as they were in my room on laptops looking up information about MH. After days in the hospital, I recovered. At the time, I was so sad about losing the baby that I didn’t understand the magnitude of what had happened to me. I started looking into MH months later and realized that I am lucky to be alive. No one in my family has ever had issues with surgery. I have not had my daughter tested but will always have the doctors treat her as if she is MH susceptible if she never needs surgery.

As told my Audra Wagner


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Vicky Precopio

Posted By Administration, Thursday, December 27, 2018


Vicky’s Story:

Hello! My story of MH began back in 2009, although at that time I was unaware of what I actually had. I spent a lot of my life having medical procedures because I was diagnosed with Ulcerative Colitis. This particular procedure was a colonoscopy and EGD; something I was very familiar with. The procedure started as they always did, but ended up terribly different than before. This was when I first became aware I had a problem. During the procedure, I was telling the nurse that I didn't feel right. She had brushed my concerns off and stated I would feel "funny" because of the medications I was given. When I got to the recovery room, things went bad quickly. My temperature had reached 105, my heart rate and blood pressure were extremely elevated, my body was bright red, and I felt like I was on fire from the inside out. I felt I had no control of my muscles. I actually thought I might die. I was transferred to the ICU where I stayed for a week. During this time, I met many doctors who all had an opinion of what happened to me. Only one doctor thought it was MH, yet he was dismissed because I wasn't given the usual triggering medications during my procedure in the OR.  Long story short, and many more problems later, I was finally able to get my insurance to approve a muscle biopsy test done at Wake Forest Baptist Health and was finally diagnosed with MH. I am thankful for actually knowing what is wrong with me. I have spent most of my years trying to explain to doctors my experience with anesthesia, my drug reactions, and medications I would not allow them to give me. I do believe most thought that I was crazy, for a time I started to wonder myself. However, I always knew something was wrong with me, and I finally found someone who actually figured it out.


As told by Vicky Precopio

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Beth Luedke

Posted By Administration, Wednesday, April 18, 2018

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


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Captain Wood

Posted By Administration, Tuesday, March 13, 2018

Captain Wood’s Story:

I am an officer with US Army Special Forces.  My mother had a reaction to Halothane in 1973 during a hysterectomy.  She was orphaned at two-years-old, so there was no family history to review.  She made a partial recovery, though she did receive some dantrolene at that time.  She was in the hospital over a week after her episode and her heart has never been the same since.  Because we knew there was Malignant Hyperthermia (MH) in the family I got a medical alert bracelet and ware it every day and night except when SCUBA diving, because it will attract sharks and I don't need to compound issues accidentally.

I returned from the First Persian Gulf War in Saudi Arabia in the summer of 1991.  My nasal turbinates grew mostly closed making breathing difficult.  I am a competitive runner and climber.  This became a challenge in the mountains of Colorado where there is already less air.  Tuboplasty surgery was advised in January 1996 at Fitzsimons Army Hospital in Denver, Colorado.  I was recently divorced and living alone.  The surgery was scheduled for first thing in the morning to have a "clean" room, understanding reactions can occur as low as 20 to 60 parts per million (PPM).  The preparation and recovery room was the same.   The first sign of a general problem was the oxygen handle on the supply line in the operating room (OR) broke during functional checking of the equipment before surgery and a mechanic was called in to repair it, delaying my surgery.  The second sign of a problem was that a quick procedure was done on a colonoscopy patient and within twenty-five minutes, he was back in the recovery room beside me. 

The nurse had started an IV on me and I was on the gurney waiting my turn.  I suddenly had an overwhelming impending sense of doom and very anxious feeling.  I am not an anxious person.  This was no more than four or five minutes after the other patient was brought back in.  I called to the nurse working near me and told her "I am going to die."  She turned to me and said you are fine, just relax and calm down.  I yelled at her, "You don't understand, I am going to die now!"  I was not getting enough air, CO2 levels were rapidly rising in my body, I was getting hot, and I started shaking mildly.  She touched my head, then put her hand on my chest and looked up at my face.  I was not on a vitals machine yet.  She then pushed the crash button on the wall and screamed down the hallway for help.  I could see the panic in her eyes when she returned to me and she said “I did not give you anything yet, I did not give you anesthesia, why is this happening?”  My body started convulsing violently.  People started running in, but the dantrolene that was specially ordered just for my surgery and was not readily available for everyone in the military hospital, just my OR had not arrived yet. Medical staff members had come from several locations, but not the OR.  They had to go back to the OR and get the MH cart and bring it into the prep room.  I was crashing in the full prep-recovery room and there was not much space to work so they pulled me out into the hallway.  I lost consciousness while everyone was responding. 

I woke up some four or five hours later, packed in ice with an IV hanging near my head and the sun shining directly in my eyes.   A nurse was still plugging dantrolene in my IV line.  Because it was freezing in Denver with snow on the ground, they had taken me outside with fresher air and cooler ambient temperatures.   I am rather pale complexioned and don't like the sun.  I was mad that the sun was shining on my face, not because I was unable to move anything, I was packed in ice, or that I had missed my surgery.   My hands were tied to the gurney with gauze, but I could not have moved them if I wanted to.  They got a towel and covered my head, propping it up so I could breathe well.  I lost consciousness again a few minutes later and don't remember much of the next few days.  Three days later, I awoke in my house not remembering how I got there.  I was alone and confused in bed, but healthier.   My body did ache, but I am very athletic and was out snowshoeing and running in just two days.  I am very sensitive to heat, in that I don't like to be hot at all and don't often wear a coat unless it is really cold.  I keep my shirts open on the top and wonder if this is a common theme among MH subjects.  As well, my normal body temperature is around 97.6 consistently.  Are there other common themes we are overlooking like blood type or blood anomalies? 

I went back to the hospital a few days later and asked what happened.  The surgeon told me they had aborted the procedure and it was rescheduled in March, months later.  He surmised that I inhaled the exhaust of the patient beside me and though in low dose, it was enough halothane for me to have a full-blown reaction to the anesthetic. I was advised to perform the muscle tests.  As an athlete, I declined.  I need all the muscle I have to perform.

As told by CPT Wood

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Michael Graham

Posted By Administration, Thursday, January 18, 2018

Michael’s Story:

 I went into the hospital in 1987 to have my tonsils, adenoids and uvula removed to help alleviate my snoring. I woke up hours later in an empty recovery room, with my wife and anesthesiologist next to me. I went to turn my head to look at my wife, but it seemed as though I was paralyzed. I could only talk and move my eyes...nothing else worked. I was told by the anesthesiologist, who happened to be the department head, that I had a malignant hyperthermia incident during my surgery. He went on to explain how this was a very rare genetic disorder. He also explained to me why I was unable to move. He explained that my muscles went through contractions, and compared it to having run several marathons back to back. They also would have to take me to the intensive care unit, where I could be monitored until I recovered. Doctors were also concerned about kidney damage. The anesthesiologist told me how lucky I was, and how close I had come to not making it. When the incident happened, they first replaced some of the equipment thinking it wasn’t working properly, but when they realized what was happening they went for the MH cart and called the MH hotline. I was in the ICU for about a week, before being moved to another hospital room for several more days. I gradually regained use of my arms, but my legs took much longer.  It took me several days before I was able to start walking, because all my leg muscles were so sore. It was like trying to walk with a Charlie horse. It also took a long time for my kidneys to return to normal, but they finally cleared up and everything seemed fine. You never know about malignant hyperthermia, until something like this happens to you or a family member. It appears as though I was the first, lucky me! But seriously I was lucky.....lucky to be alive! Since this is a genetic disorder, I had to notify members on both sides of my family. Everyone had to assume in the future that they also carried this mutation, and needed to notify the anesthesiologist before any surgical procedures. I went to Philadelphia, and had the caffeine muscle contracture test done and it was positive. I then had my 3 sons tested; 2 were positive and 1 negative. Others in our family also had testing done with several more positives. Needless to say, everyone carries the MH cards in their wallets, some have bracelets and others, like me, have medic alert necklaces. You can’t be too safe, and if you choose not to be tested, you should assume that you have MH. They still treat my son, who was negative, the same as if he were positive before any surgery. I am very grateful to MHAUS for the great strides they have made in the last 30 years in making more and more people aware of MH and for being on the MH hotline when it was needed for me. I’m also thankful for the continuation in genetic studies in order to help find a non-invasive way of testing for MH that doesn’t involve surgery.

As told by Michael Graham (age 69)


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Our Family's MH Experiences - Jonathan and Karen

Posted By Administration, Monday, January 15, 2018

      Karen and Jonathan before his surgery                     Karen and Jonathan after his surgery


Our Family's MH Experiences


Our son, Jonathan, was born with a very visible birthmark on his face.  His doctor suggested removing it prior to when he started Kindergarten, so in 1985, when he was almost 5, he had the surgery at Kaiser.   The pictures show Jonathan (and his sister) before and after surgery.


Fortunately for all of us, the anesthesiologist noticed that his jaw muscle tightened and his heart rate increased.  They finished the surgery as quickly as they could and told us that he likely had MH and had to spend the night in the hospital.  We do not believe he was given Dantrolene.  His CPK was elevated, which supported the MH diagnosis.  The next day he was allowed to go home, and we were referred to MHAUS, which we immediately joined (and have been members ever since).


Jonathan's father (Art) underwent muscle testing at UCLA shortly afterwards and was found to be  positive, which confirmed Jonathan's diagnosis and told us which side of the family likely had MH.  This has allowed Art to inform doctors about his condition prior to surgery and probably has averted serious issues. 


Jonathan had to have his wisdom teeth removed when he was in high school.  We had to work hard for the oral surgeon we wanted to get permission to perform the procedure at Kaiser, where Jonathan could be monitored and where they would avoid succinylcholine, which is sometimes used in oral surgery.  All went well and the skids were greased so when our daughter, Karen, (who had a 50:50 chance of being MH susceptible) also needed her wisdom teeth removed, we could follow the same protocol. 


The final chapter, so far, just occurred this month.  Karen arranged for the muscle contracture testing at UC Davis and was found to be negative.


As told by Jonathan and Karen’s mother, Jackie. 

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Barbara Matulionis

Posted By Administration, Wednesday, May 24, 2017


Barbara's Story --


Four years ago, I became interested in donating a kidney to someone that I do not know. I contacted a local hospital in Cincinnati and proceeded with the work-up. In the end, I was declined as a donor due to having strong family history of Malignant Hyperthermia. Unless I could prove that I was not MH susceptible, I would not be given the opportunity to donate. I was disappointed because I went through with nearly all of the testing. Additionally, I have had many surgeries in the past using non-triggering anesthesia. I believed I could safely have a kidney removed.

This was the impetus for my sister and I to get tested for MH. While being turned down as a potential kidney donor was the initiating event to start the process, we really wanted to know our status so we could, hopefully, clear our children of this condition. We knew we each had a 25% chance of being susceptible.

Using airline and hotel points, we went to Wake Forest Baptist in Winston Salem, NC to have the muscle biopsies done. It turned out to be a fun and memorable trip. My sister had her testing done one day and mine was done the next. The medical care we received was outstanding. It was painful afterward, but since it was muscle pain, it was very tolerable. But we did use the wheelchair services at the airport to save walking!

Unfortunately, the results of the biopsies showed that we are both susceptible to MH. We were not able to clear our children, but we are very glad we had the testing done.

I let the idea of kidney donation go, figuring it wasn’t meant to be. Recently I saw a news story about a woman in Cincinnati who was in need of a kidney. This re-inspired me to try again. My sister and I had some communication with Dr. Joseph Tobin early in our testing process, so I reached out to him and asked if he was willing to write a letter of support. After consulting the group of anesthesiologists at MHAUS, he wrote a brilliant letter that was educationally informative and indicated support by MHAUS that I should not be declined as a potential kidney donor due to being susceptible to MH.

I researched other transplant centers within driving distance from my home and made a decision. After doing the initial paperwork and labs, I drove to Columbus, OH to meet with anesthesia, support letter in hand. I was approved to continue in the evaluation process. I left the center feeling confident that the medical professionals understood the condition and that I would be in good hands should I be approved to donate my kidney. I am extremely grateful to Dr. Tobin for his support. I have nearly completed the donor evaluation and hope to donate my kidney in the near future.



All is good! Surgery was early Oct. 31, 2017 and I was discharged Thursday, November 3, 2017. Today, November 7, 2017, marks a week and recovery is going well. I was told I started a chain of 5 donor/recipient pairs. I'm awaiting an update on the recipient. I asked for, and received, a picture of my kidney!


As told by Barbara Matulionis 

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Carrie Baldwin

Posted By Administration, Tuesday, December 27, 2016


Tyler’s Story --

My son, Tyler, is 13 years old. He is MH susceptible. Tyler’s father and every single male on the paternal side, have MH. They have lost two members of the family due to this genetic disorder. Tyler’s dad went on to have two sons with another wife and those boys are also MH susceptible; confirmed with the muscle biopsy. As Tyler’s mother, I opted out of having him go through the painful procedure as Tyler has always been considered MH positive.

Tyler has always shown signs of having this disorder. His body temperature spikes to 102° F during the summer and his muscles will cramp, so I have to monitor his activity carefully. When he is scheduled for surgery, he is always the first patient so the anesthesia machine is clean and prepared for Tyler. The surgical center ensures to have all the necessary medicine and equipment on hand for him. Furthermore, whenever he checks into the hospital here in North Carolina, an alert flashes to make the staff aware of his MH susceptibility.

I had never heard of Malignant Hyperthermia until Tyler was born. Now I read a lot about it and stay informed. Tyler is an active athlete in his middle school and is truly wonderful. He suffers a bit more muscle pains than the average person but that doesn’t slow him down.


As told by Tyler’s mother, Carrie.

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Karen Irving

Posted By Administration, Wednesday, November 9, 2016

Scary Experience - Karen's Story

In 1971, a routine tonsillectomy in Knoxville, TN was performed as an out-patient surgery. During the surgery the patient experienced cardiac and respiratory distress accompanied by a rising temperature and muscle contracture. The patient, Karen Irving, was 21 years old and would experience another such episode two years later during a surgery to repair a broken arm. The first hospital stay lasted six days with the second stay lasted seven days. The doctors had no explanation for either occurrence and the patient ran a fever of 104 – 105 for four days.

To say I was lucky is putting it mildly. I remember reading in the early 1980’s about a young football player in the Knoxville area having surgery on a shoulder and dying from malignant hyperthermia. This was the first time I heard of the disorder. In 1984, an oral surgeon planned to remove my wisdom teeth in the hospital. In the planning process, I informed him of my fears because of my two previous experiences. He was concerned and surprised that I had survived the previous surgeries. His plan included an investigation of what he thought may be happening prior to my surgery.

The day of the surgery, I entered the surgery prep area and was connected to heart and respiratory monitors and an IV pump. The surgeon’s plan was to perform a blind test of a couple of anesthesia medications to see my reaction. The first anesthesia given showed no change in my vital signs. When the second anesthesia, succinylcholine, was administered a rapid change occurred in my heart and lung vitals and I remember alarms sounding and people scurrying around me. Later he remarked, “You were very calm during all this”.  I was treated with Dantrolene and then he used a non-triggering anesthesia for my surgery. I’m quite sure that if this occurred in 2016, he would send me for a muscle biopsy first, which I later received. His investigation may well have saved my life.

After joining MHAUS, I have had bilateral knee replacement and a hysterectomy without further incident. MHAUS and dedicated Anesthesiologists need to be credited with providing information and care to patients suffering from Malignant Hyperthermia. 


As told by Karen Irving

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Ben Hise

Posted By Administration, Tuesday, August 2, 2016

Ben's Story

It was Saturday, July 2, 2016, when my husband was trying to repair our roof before a big storm moved in. The rain moved in quicker than expected and he was trapped on our metal roof. He began to slide and somehow ended up cutting his right hand on his pinky and ring fingers.

We rushed to the ER, where he got 20 stitches and was sent home with a follow up at a clinic in Bloomington for Tuesday, July 5.

That Tuesday, we got to Bloomington early that morning and we were turned away from the Orthopedic Clinic we initially went to, as they did not accept our insurance. Through some frantic calls, I was able to get him a consult with an orthopedic doctor.

We met quickly with the doctor, who recommended emergency surgery to repair the hand, as he was losing feeling in his fingers.

He was rushed into what was supposed to be a one to two hour procedure….two hours passed, then three… On nearing the fourth hour, his doctor came out to speak with me.

He explained that the hand surgery had gone extremely well, in fact he is considering it to be one of his most successful surgeries as he was able to repair both severed nerves and both severed tendons and my husband was expected to have a full recovery.

The doctor then went on to explain that about an hour into the surgery, Ben began to have a fever. His anesthesiologist alerted the nurses and requested that they immediately call the Malignant Hyperthermia Hotline when his heart began to race.

The anesthesiologist conferred with the operator on the MH hotline, and quickly began treatment for MH with dantrolene.

Ben’s CO2 levels rose, his muscles began to spasm, and his temperature was still high after the treatment and during recovery. His doctor called for emergent transport to the emergency room.

When we arrived, the nurses quickly began to administer dantrolene again, drawing labs, and putting Ben on what we called “the ice man blankie.”

Late on Tuesday evening, Ben was transferred to the ICU because his temperature was still nearly 102*. His nursing staff and doctors were so excellent and optimistic about his condition; I never even had a doubt that he was going to be okay.

Wednesday, July 6, his temperature was down to 99-100*, he was transferred to a step down floor, the Progressive Care Unit. He was monitored closely there for two more days. He had his worst night on July 7th. It was then that his fever spiked again, and he began to develop bronchitis. Again, the hospital reacted quickly and treated him immediately for everything.

The next afternoon, amazingly, he was released!

I heard so many times from everyone whohad treated Ben over that week that no one had ever seen an actual case of MH before. This included his nurses, ER doctors, his surgeon, and even his anesthesiologist…the same man whose knowledge of MH and quick diagnosis of the condition saved my husband’s life.

Ben has now begun the healing process from this huge ordeal. He felt very sore and flu like for days after the incident, he said every muscle in his body felt tight and sore. But, he has been able to rest somewhat comfortably and is gaining strength with every passing day.

We have already added MH to all of our children’s medical history as a precaution for any future procedures they may have to have. We’ve warned every member of Ben’s family that it is a possibility that they carry the same genetic precursor. We pray that we, nor anyone else, ever have to go through this. But, if they do, we pray that their doctors are able to diagnose and treat quickly and effectively.

As told by Ben's wife; Chelsi Hise

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Daniel's Story

Posted By Administration, Tuesday, May 24, 2016


Daniel’s Story

In 1982, my son Daniel was born with what was thought to be a coarctation of his aortic arch.  His doctor thought that Daniel would undergo surgery around the age of four when his body was larger. However, when his blood pressure began approaching 180, it was decided that he should undergo surgery at the age of eighteen months.

On April 10, 1984, Daniel underwent surgery. During the last 1 1/2 hours of a six-hour surgery, his temperature went from 37 1/2 to 39 centigrade with a pulse ranging from 130 to 140, but he was not significantly tachycardic for a child his age. Although his cardiac surgery seemed to be successful, his condition did not improve, and it was discovered that he had an interruption of the aorta, meaning that it was not even connected.


Exactly two weeks later, he underwent a second surgery that lasted approximately seven hours. During the last 3 1/2 hours, his pulse increased from 130 to 200, while his temperature went from 37 1/2 to 41 degrees centigrade. The anesthesiologist had enough suspicion of Malignant Hyperthermia to administer Dantrium and begin cooling measures. It was also noted that Daniel developed a degree of metabolic acidosis requiring sodium bicarbonate. Immediately after surgery, the CPK was approximately 1000, and twelve hours after surgery, it was approximately 2000; 24 hours after surgery, it returned to approximately 800.


His anesthesiologist consulted with Dr. Bob Reynolds at UCLA and he agreed with the diagnosis of Malignant Hyperthermia based upon the tachycardia, rapid increase in temperature, development of metabolic acidosis, and the response to Dantrium.


Our family immediately joined MHAUS and we have been members for 32 years. Daniel has had subsequent surgeries and precautions for Malignant Hyperthermia are always taken. We have made sure that all doctors know about Malignant Hyperthermia and give them the MHAUS Hotline number. It was obvious to us that doctors and nurses were learning more information as the years went on because sometimes they would call us before we called them. I began to notice Malignant Hyperthermia crash carts that would follow Daniel through the hospital. Daniel wears a Medic-Alert necklace that states “Use precautions for Malignant Hyperthermia,” “Aortic Graft,” and “Allergic to Penicillin.”


In 1986, my husband underwent a muscle biopsy test with Dr. Reynolds and the test came back positive. Whenever my husband or three children undergo any surgery, they are always treated as being susceptible to Malignant Hyperthermia. My two other children are still awaiting a less invasive test that is covered by insurance.


Here are before and after pictures of Daniel, who will most likely need additional heart surgery in the future, but he is alive and well due to the vigilance of his doctors and the excellent care he received at Cedars-Sinai in Los Angeles.


As told by Daniel's mother,  Jody Liss-Monteleone

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Maverick Domingo Longoria

Posted By Administration, Tuesday, May 24, 2016
Updated: Tuesday, May 24, 2016



Maverick Domingo Longoria  

Maverick's Story -- 

April 6, 2016, my 8 month old son underwent a urological procedure. The doctors were done with the surgery and were applying the dressings when they noticed that Maverick’s CO2 levels had gone up. My sons temperature had dramatically increased and he had a heart rate of 200. The doctors, nurses, and staff caught the MH crisis very early on and acted on it quickly. The hospital was very well prepared and took exceptional care of our baby. During his recovery time, we received a ton of information on MH and were referred to MHAUS. We, along with friends and family, had no prior knowledge of MH and were in total shock when out son had this reaction. Now, we are in the process of working with genetics to get ourselves tested to find out who carried the gene. This was a very scary and unexpected situation. We want to help spread awareness about MH. We are hoping that in the near future that testing for MH becomes more available and easier to conduct. Today, Maverick Domingo Longoria is full of life and continues to grow, learn, and amaze us! His strength is beyond words. We love him so much!


As told by Maverick’s mother, Valerie M. Longoria

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Ruth Ann Bruce

Posted By Administration, Monday, May 9, 2016
Updated: Friday, May 6, 2016

Ruth Ann's Story -- 

Twenty-eight years ago in June, my 7 year old son went in to have surgery for his tonsils; routine surgery that his sister had a few months before. Our small town hospital was going through bankruptcy but the anesthesiologist refused to do the surgery without dantrolene…even though, at the time, we had no knowledge of MH running in our family. Praise the Lord! Our son was life flighted out due to an MH crisis during the surgery. After the MH episode, it was suggested that my family be tested for MH. My son’s father also has MH. My son and his family now wear medic alert bracelets. If that anesthesiology hadn’t made sure he was prepared, who knows that would have happened. Knowledge is power.


As told by Ruth Ann Bruce 

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Richard Masanz

Posted By Administration, Friday, May 6, 2016



                                                     Richard Masanz

Richard's Story -- 

I had severe varicose veins with phlebitis. Rockford Memorial was suggested for the vein operation. When we set up the appointment, it was mentioned that MH ran in our family. My sister died in 1947 from complications associated with an appendix operation and my brother died in 1948 from complications associated with a car accident. Both deaths were thought to be MH related. With that information, Rockford Memorial gave the okay for the vein operation. However, the doctor and the anesthesiologist suggested that I get tested for MH prior to surgery. So, an appointment was made at the Mayo Clinic for the test. My son came along with me and tested negative while I tested positive. We then went ahead with the vein operation with no issues because the doctors and anesthesiologist were able to take the proper precautions after receiving definitive knowledge of my MH.  


As told by Richard Masanz

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Cheryl Mercer

Posted By Administration, Thursday, March 31, 2016


                                 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

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



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Doug Davison

Posted By Administration, Tuesday, March 15, 2016


                   Dick Davison                                                    Doug Davison     


Doug Davison’s Story--


The year was 1978.  It was December 14th and Christmas was not far away.  Choir practice was that night and our rehearsal was well underway.  Someone came up to the choir loft to tell me that I had a telephone call.  I hurried down to the telephone and picked up the receiver.  I can't even remember if it was my parents or my sister calling, but I was told that my brother slipped on some ice (in Chicago, where he lived at the time) and he was in serious condition.


Calls flew back and forth with my parents (in Hershey, PA) and my sister in Chicago.  I found out that my brother, Dick, had fallen on some ice, while carrying my sister's baby, and had fractured his ankle.  He was taken to the U. Of Chicago Hospital for surgery, but had some complications when his temperature rose dramatically.  It soon became apparent that he could not be saved, even with all of the measures that the hospital staff had available.


The whole scenario just seemed surreal.  It wasn't until much later that my father heard the term "Malignant Hyperthermia" from the doctors at the hospital.  No one seemed to know very much about the syndrome, but that was deemed the cause of Dick's death.  My father was much more accepting of the diagnosis than I was.  I immediately thought that it was the fault of the operating doctors.


It wasn't until my dad and I traveled to Chicago and I actually signed for Dick's belongings that it became real for me.  I never would get to see him again.


As my dad began to research Malignant Hyperthermia, he found that an anesthesiologist in Philadelphia (Dr. Henry Rosenberg) was involved with testing for the problem.  It involved taking a piece of muscle from the leg and exposing it to potent inhalants and caffeine to see if it reacted.  My dad and I decided that we needed to be tested, so that we would know if we carried a gene that would make us (or our family members) susceptible.  Dr. Rosenberg did the test at the University of Pennsylvania Hospital.  My dad's test came up negative, but mine was positive.  When my cousin (Suellen Gallamore) on my mother's side of the family also tested positive, it became clear that the gene was passed along from that side of the family.


As a result of the testing, my dad (Owen Davison) and my cousin, Suellen, worked with Dr. Rosenberg to begin an organization that became MHAUS, which has been responsible for the dispensing of important information to anesthesiologists and hospitals regarding the identification and treatment of Malignant Hyperthermia.


Although my brother's sudden death was a real tragedy for me and my family, it helped lead to the important work that has saved many lives.


As told by Doug Davison

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

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Zachary Zgabay

Posted By Administration, Tuesday, March 8, 2016


Zachary's Story--

When I was young, either in first or second grade, I went to have surgery on my right eardrum, which had developed a hole. I was going to have a skin graft done to repair the hole, but was always going to have hearing damage in that ear. When I finally had the surgery, I woke up to find my legs tight and stiff. The next thing I remember, I was spending a few nights in the hospital. I had to almost learn to walk again as my muscles were very sore and tired. I used a walker for a few days to help me get around. This is when they found out I had malignant hyperthermia. The doctor told my mother that if it had been recognized just 10 minutes later, I would have died.

Since this episode, I have had other surgeries, but most of them have been with local anesthetics that do not trigger an MH episode. In the past three years, I have had two surgeries; one on my shoulder and another on my wrist. For both surgeries, I was under that care of an experienced anesthesiologist. Everyone was aware of my documented history of MH. Each surgery went smoothly.


As told by Zachary Zgabay

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

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