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 When they found the MH kit it was realized that the medication to reverse the anaesthetic was out of date by 12 months.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

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