Sharing Stories - Janet

Janet:

I have been an RN for 33 years, am 53 years old, and beginning two years ago, I started having episodes that started with hands itching, trunk and thighs breaking out in whelps, seemingly for no apparent reason, and heart racing, just feeling horrible.  I have a pacemaker so I wasn't sure if it was something with that, but have had pacemakers since I was thirty six, I was fifty three.  The first time, I freaked out as it made me panic, so took Benadryl, layed in cool bath, and eventually got better.  

Over the next year, I had more episodes, seemingly out of the blue, but they became closer together and more severe.  Some during the day at work, some at home.  My last reaction happened last November, I was sound asleep, and at three am, woke up with shortness of breath, got out of bed and realized my entire body was whelped up, and with every second, I became unable to talk, breathe, and woke up my spouse, and apparently tried to go to the bathroom, but couldn't make it, and was helped.  I don't remember much after that.  I had lost control of my bowels, somehow found it back to the bed, and was in and out of consciousness.  I tried to say call 911, and as I had many health problems, was encouraged to just calm down and would be OK.  VERY SOON, I was unable to move any body parts, EMS was called, and before they got there, I had sweated so bad, soaked my entire bed, body, and literally felt the life drain out of my body an inch at a time.  It got to my lungs, I thought in my brain, "In 2 more breaths, I will see you Mother," who was deceased for five years, and in two more breaths, I stopped breathing.  I KNEW I was gone.  The next few minutes I was out, and it's true what they say, the hearing is the last to go.  I heard the EMS people screaming trying to get an iv started, hooking all tubes and monitors up on me, and I remember looking down at my body, not being able to move anything, but could see just for another second.  The rest I was told.  They picked me up, naked, with excrement on me, to their stretcher, to their ambulance, and the next time I awoke was in the ER. bright lights all over, tons of people running and yelling out orders, "Her rectal temp  is 91, get a foley catheter, labs, ..."  Had a non rebreather already, highest oxygen level for non intubated person, and labs drawn, chest xray, and I heard "no urine, get heated iv fluids and ten heated blankets and bare hugger, which is a heated electric blanket, then, I went out again.  They said it took many bags of heated iv fluids, and all those blankets to get my rectal temp to just 92, and many bags to get any urine output in my catheter.  In other words, ALL my body organs were shut down, and I was literally dead, and would NOt have survived if not been treated in that little HOSPITAL ER, as they said they had not enough time to get to Little Rock, where the bigger hospitals were, and this little hospital saved my life.  They even asked my significant other if I lived on the streets as I looked SO BAD, my feet were black from lack of oxygen, and I had sweated so bad my hair was soaked, makeup dripping off, and I looked horrible.  Two days later, when I was "better", I had already gone to have allergy testing at my primary care Dr. and was not allergic to ANYTHING, not even dust mites!  So she just told me I would need to carry an epi pen and Benadryl and would be  fine.  

l made an appointment with an Allergy specialist, and after all she heard from me, asked if I was a meat eater.  I said "I am a meat-aholic, and cheese-aholic, that's all I eat everyday.  Just so happens she said, "Well I'm gonna run a blood test on you for Alpha Gal.  In the meantime don't eat any mammalian meat or any dairy.  I thought, she's got to be crazy, I've eaten this all my life.  Three days later, I got the call.  "Janet, your numbers for Alpha Gal are off the charts."  

Now knowing that meant that the one tick bite one year before would change my life forever.  It's been one year since I've had any dairy or mammalian meat, and I've had not one more reaction.  I still carry my Epi-pen, and Benadryl, but I'm not afraid anymore.  I've since learned that many people have died before being diagnosed, so if you think you are just "having a reaction with hives" think twice, get tested, and save your own life.