There are two reasons I am still breathing right now:
Reason one: I followed the advice of my doctor- I carried Epipens around with me, wherever I went, no matter what.
I am hoping my survival story will inspire other allergy sufferers to pull through, and not die.
I would like folks like me who live with the reality of sudden death from anaphylaxis to know that, despite the odds of survival being extremely unlikely, it is POSSIBLE. I lived to tell the tale, and I hope other people survive too.
I was camping alone in the Goldmeyer Hot Springs Nature Preserve, a gorgeous and healing place way up in the woods of Snoqualmie National Forest along the Middle Fork Snoqualmie river. This place is only accessible by hiking 5 miles along the river and up the mountain from the Dingford Creek trailhead, which is at the end of a 5 mile windy dirt road. You have to drive 12 miles up this other dirt road to get to that dirt road, and the forest service requires a pass for each day your car is there, so not a whole lot of people out there. Which is fine, I was there to enjoy communing with nature in solitude.
It was Monday August 8th 2011.
It was the last day of my vacation. It was sunny and beautiful.
I went to the hot springs mostly to heal my skin-graft. The skin around the titanium bone anchored hearing aid implant in my skull had been inflamed with painful eczema for weeks. The hot springs worked magic on my skin. During my soak, the caretaker stopped by to chat and she was amazed at the massive improvement. The night I arrived, the skin around the metal implant in my skull was red, and blistered over with yellow pus. Not a pretty sight.
Now, after an entire weekend at the hot springs, the infection was gone. It looked like normal skin.
There was another camper who was soaking in the springs, -he had slid 250 feet over snow and ice on his descent from the mountain pass and had scraped off most of the skin on his lower legs and knees. I assured him that the springs would heal him too. We chilled and soaked for a while and listened to the sounds of the forest and the river rushing by.
At about a quarter to eleven, I hiked ½ mile downhill to base camp, where I ate lunch. Since I was leaving to return home, I packed up my tent, sleeping bag, and got my camp stuff ready to be loaded into my backpack. I was still a little sore from the hike in, and right before lunch at around 11:30 I took two aspirin. Then I hiked to the river, where I filled my water bottle with water I filtered and hand pumped( to avoid getting bugs like Giardia and Cryptosporium.) using my water filter.
Hiking back to camp, I stuffed my stuff into my backpack, which probably weighed about 45-50 lbs. I was still peckish, so I then ate a “Go-Live” Pumpkin Bar. Then I hiked to the caretaker's lodge to check out of camp, I looked at my watch right after checking out, it was 1:00 PM in the afternoon.
I said goodbye to the kindly caretaker and started down the path to the bridge over the river. The caretaker's husband was busy working on trail maintenance. I said goodbye to him, and I crossed the bridge over the Middle Fork Snoqualmie river. The first part of the five mile hike was straight uphill. It was a beautiful day. The birds were singing. I was all by myself and really enjoying being outside and the fresh air. I was keeping a brisk pace with a heavy load and after about 45 minutes the uphill trek became a gentle rolling trail, and I remember being appreciative of the path not being so uphill.
Then it all started going very, very wrong.
I noticed that I was really itchy all over my body. I then noticed I was covered in flies and mosquitoes and all sorts of horrible creeping biting things. They were swarming, landing on me. I was fairly sweaty from the exercise. I took off my pack to break out my insect repellent, Jungle Juice. I didn't want to put chemicals on my body after my healing soak in the springs, but I was so itchy and there were so many bugs it was like a horror movie. The mosquitoes have been really bad this year in that area, I was later told. Two mountain bikers zoomed past me downhill top speed.
I had purposely packed my backpack to survive.
The easy to access top zip pouch contained a compact mirror, bug repellent, two albuterol asthma inhalers, and of course, two Epipens. They were both expired. One Epipen expired in 2008. The other expired back in 2010. My allergist at Virginia Mason, Dr. Robinson (he is doing the peanut allergy research study with Benaroya Research.) had told me about a year ago, 'never go anywhere without your Epipen, an expired Epipen is better than no Epipen at all!'
I obeyed my good doctor's orders, and I took my Epipens everywhere I went. I didn't want to die.
It didn't matter that I was not going to be consuming food around other people, nor that I had brought all my own food with me, food that I had eaten many times before with no allergic events.
I checked out my reflection in my compact too. I noticed that it looked like I had a really bad mosquito bite on the left side of my forehead and another right above my left eye. I applied the Jungle Juice to my head and then my arms first, and then to the backs of my legs. The swarm started to lose interest. I put on my backpack and started walking again.
I remember being really irritated with the smell of the plants at this point. Foxglove was in bloom, and I remember thinking how severe and itchy and unpleasant I found the fragrance of the pollen. I remember the strong smell of the grass pollen and the strong odor seemed to make my skin sting. I was enjoying all the aromas of the wilderness prior to this point, so I was kind of startled by how sudden the pungent plant fumes aggravated me. The exposed skin on my arms, neck, and face started to burn, like I was being sprayed with mustard gas.
It was at this point I noticed that it was getting harder to close my left eye. The hive from this tiny mosquito bite, was swelling up more and more. My forehead seemed to be paralyzed and numb. Also swelling up. I looked at my reflection in the mirror. The swelling was extreme -I could see that my left eye was only visible as a tiny crescent in this swollen mass that was the left side of my face. At this point, I experienced a Eureka moment of insight: I was having a severe allergic reaction. I kept walking on that stupid trail toward my car. I noticed that my asthma was getting worse. I stopped briefly to use my asthma inhaler. I started walking. It was around 2:30 P. M. I was pretty much halfway between the camp and the where my car was parked. I still had 2 and a half miles to go. Mostly uphill. I kept walking.
I should have used the Epipen at this point, but I could not bring myself to do it.
Not using the Epipen was a decision that almost cost me my life.
I had not eaten anything that would have caused an allergic reaction, so I minimized my situation. How could my body betray me like this? I was getting extremely sick for absolutely no reason.
The cause of this near-fatal allergic reaction remains unknown to this very day.
Something out there, in the mountain forest, tried to kill me, and I have no idea what it is.
Could I have been stung by a wasp, hornet or bee without knowing it? There were a lot of bugs at one point, and a good part of my head was numb, the nerves having been severed during the surgery on my skull to get hearing on my right side. Was this an allergic reaction to a stinger? Was this an allergy to the mosquito bites? The flies had been biting me too. Was it something about the flies? Or was it something I ate? I'd eaten all that food before without any ill effects, and I triple checked the ingredient list before packing my food supply. Could it be a new food allergy? I read something once where someone went into anaphylaxis from exercise, but I'd been training outdoors and hiking up steep mountains all summer. Whatever caused this allergic reaction remains unknown to this very day.
At this point, I was not panicked. I was calm. I'd watched an episode of “Man versus Wild” and I remember seeing this British Survival man, Bear Gryls get stung by an African bee, while trying to get a honeycomb from a hive on the Savannah. His face and eyes were swollen up very much like mine. I know that he lived, so I knew that I had a chance. I remember actually thinking how I was thankful that I wasn't in Africa.
My thoughts were very crystal clear, I have never before or since been so awake, aware and in my body, in the present moment.
I felt as if I were a Buddhist monk. I had moments to live, and was living it moment to moment. I decided to keep walking toward my car. I had no judgement at this point about how bleak my situation looked.
The river looked cool, and refreshing and my skin was on fire. It hurt so bad. Hives started appearing on both my arms. There was a lot of pain. I did want to go down to the shore and put cool water on my skin, but I decided against it. My survival depended on getting help, and I was more likely to get help if I stayed on the trail. Keep walking. It was such a pretty day.
I then noticed it was getting harder to breath through my nose. My palate felt like I had something lodged in the back of my mouth. I then noticed that my throat felt funny. I then realized that I had hives all over my neck. My windpipe felt horse, and, swollen. I remember thinking that anaphylaxis was not a very nice way to die. I started screaming at the top of my swollen lungs: “HELP!!” “SOMEBODY!!!” I was still about two miles from the car.
My screams were pointless. There was nobody around for miles.
I kept walking, and I took out my Epipen from my pack. I started crying. Keep walking, I told myself. I staggered onward, toward my car.
I remember listening to the forest and the river, and thinking how awesome the sounds were to hear. I was born with Single Sided Deafness and one ear, but I was going to die in stereo. I appreciated the noises surrounding me, the irony of getting this implant and skin graft healed by the hotsprings, only to end up dying on the trail home. I really didn't want to die, though, really, and I started praying out loud to God. “LORD, HAVE MERCY ON YOUR SERVANT!!” I was sweating and weeping hysterically. “Please God, I don't want to die!!” I then knew that it was out of my control if I lived or died. I prayed as Jesus did in the garden at Gethsamane, “I don't want to die, Lord, but not what I want, Lord, only what you want done!!” I really meant it. It was up to God. God: All good, All knowing, and all powerful. God was the only concept in my mind that existed in the entire universe that was stronger than anaphylaxic shock, and I wanted to live, but I was up for anything She had in mind. A verse from the Bible came to mind, 'Whosoever shall seek to gain his life shall lose it: but whosoever shall lose his life'shall preserve it.' And I remember being filled with peace thinking about this biblical quote and not knowing why, and still I don't know why this comforted me so. Keep walking, I told myself, one foot in front of the other, as I marched on the lonely mountain path.
Each step was getting more and more work. I was getting tired. I was blind in my left eye.
My throat itched. My tongue was swelling. I was getting weak. I really did not want to use the Epipen, it hurts a lot, but it looked like I would have to. But first I needed to stop walking. I was feeling faint. I took off my heavy backpack, and sat down on the trail. I unsheathed the Epipen, armed it, and held it over my thigh, and then I just couldn't. My muscles wouldn't budge an inch to shoot myself up with that giant painful needle. Although I logically knew that my survival depended on doing this, I think the primitive reptile part of my brain that wanted to avoid pain hijacked control.
At this point I remember crying hysterically and the the tears streaming off my swollen face and on to my hands. The Epipen instructions were disolving -the Jungle juice and sweat and tears was like paint thinner. I was very very tired. I was lightheaded. It was at this moment I heard people. I looked down the trail and saw two mountain bikers heading toward me. I summoned up all the energy I had left and screamed:
“HELP ME!!!! I AM HAVING AN ALLERGIC REACTION AND I AM GOING TO DIE!!”
“HELP!!!!! PLEASE!!!!!”
They were 2 young people, Jason and Channin, and they stopped and asked what was wrong. I told them in a horse whisper that I was in anaphylactic shock. I asked them to help me administer the Epipen, I told them I couldn't bring myself to do this, and told them that I would die if I didn't. “Stab me in the leg, the needle' will go through my clothes, and hold it down firmly for ten seconds.” My face was so swollen it didn't look human anymore, and I was slumped up against my backpack on the trail like a corpse, I'm sure it must have been horrible for them to find me there like that. Jason did as he was told, and Channin told me to keep breathing. Later I found out she was a Yoga instructor.
The Epipen worked fast. I found breathing easier. I told them I needed to get to a hospital as soon as possible, or I would surely die. They looked at each other and then Jason put on my backpack and grabbed both bicyles and started walking back to the trailhead parking lot while Channin put her arm around me and supported me while we walked toward the car. Keep breathing, she told me. Slow deep breaths. Breathe through your nose. I told her I couldn't breathe through my nose, my palate and my sinuses were too swollen. She said that was okay, just keep breathing. My lips were swelling massively too.
The Tibetan Book of the Dead describes the death process as dissolving energy fields. I was living it. The passage that came to my mind at this time was this:
“Pay Attention. It seems that the earth energies are dissolving into the water energies You are losing the ability to move your limbs. Observe the Inner Signs.”
It was getting hard to move my arms, my legs. My inner signs were pointing to death. I had no judgement or feelings about this. I remember thinking it was peaceful. Then I remembered my friends and family and started crying. Channin, looked at me, and said, 'Your scared, aren't you?' I nodded and we kept walking. I was getting weaker, and I was getting cold. Skin on fire like burning acid, but I was freezing. Teeth chattering. I told them I was feeling worse and the other Epipen might be needed. Jason got it ready and I told them to tell my Mom that I loved her if I didn't make it. Channin gasped, “Don't say that. You'll make it. Keep breathing. Here, I can help you walk.” We kept walking toward the car, toward salvation. I mustered up all the energy I could to hold fast, to hang on for dear life, to keep breathing, walking, moving.
Finally we were back at the trail head parking lot. Channin and Jason literally threw my backpack in my car, Channin got behind the wheel of my car and we were racing down the dusty dirt road, Jason following us in his truck. Channin told me that she was going to graduate school in the Fall to be a physical therapist. I told her that she would make a very, very good physical therapist.
I looked out the window at the forest, at the river. I looked at my legs and arms. My hives had joined together and my body was covered in one big itchy hive. My stomach and my abdominal organs inside my body started to ache. There was a lot of physical pain. My organs, my intestines, my guts hurt so bad. I attributed these sensations to the anaphylactic shock.
My body was routing blood and oxygen from all non-essential life support systems.
My internal organs were dying inside me.
Looking out the window my vision started seeing this sparkling static everywhere. In very pretty pastel colors. It looked as if everything in the universe was made of a shimmering energy field. It was very zen, very peaceful and I liked it a lot. I felt really spiritual, really connected to this energy matrix of billions of tiny twinkling lights. I do not know if it was a mystical consciousness revelation, or a biological effect from my brain getting less and less oxygen. I somehow had this knowing inside me that I needed to give everything I had to fighting to stay alive, but beyond my life, this fight, this struggle, I was surrounded by this loving force that permeated everything and it sparkled as I looked around. When I have intense spiritual experiences, I am occasionally able to see this sparkling love energy field again. It's in my vision sometimes , but I know it's always there. Whatever it was, mystical spiritual experience, or hallucinations of a dying brain, it was very nice, and I am no longer scared of death.
It was a 45 minute drive to the hospital. We stopped twice: once at the gas station for directions to the hospital and once at the North Bend Twin Peaks Cafe, when we didn't see any signs for Snoqualmie North Bend hospital Emergency Room once we took the exit off the freeway.
I remember thinking how ridiculous and wonderful it was to be dying in the car outside the cheesy restaurant from that weird television show.
One more mile to the hospital, the waitress said, just turn left and you'll see the big sign. Channin sped out onto the road and tore into the Emergency Room lot.We spilled out of the car and I grabbed my phone for Channin to call Jason (He was no longer following us) and my wallet (identification) and we stumbled through the entrance to emergency room. I mumbled to the receptionist something that I was experiencing an anaphylactic reaction, and then I started vomiting. All over the ER floor. Doubled over in pain. My internal organs do not like to be without oxygen, and they were letting my body know all about it. The receptionist threw a vomit bag to Channin who handed it to me. Which I used as my stomach sickly emptied itself in throes. I continued to vomit, as nurses raced around me. One asked me if I needed a wheelchair, and I said No Thank You. I was fading fast, but I could still walk! On the weakest shakiest legs that which I have ever known, I kept walking, one foot in front of the other, until I collapsed onto the hospital bed.
I wasn't given any tests, except the doctor trying to open my mouth to evaluate the severity of the swelling of my throat. He then ordered another shot of epinephrine. I remember the nurses racing to give me another Epinephrine injection in the rear, and then noticed an IV being installed in my arm and various chemicals like IV Benadryl and the mega-steroid Salumedrol being pumped into my bloodstream.
I was now officially going to make it. Cool.
I saw Channin and Jason one more time. They visited me in my ER room to say goodbye. I told them that I was sorry that my allergies ruined their day out, and I thanked them several times for sticking with me and saving my life. I asked them if they were going back out to the hot springs that day, and Channin said: “No Way! We're gonna go get a drink at a bar around here!!” I agreed that was a fine thing to do, I told them that there must be a lot of taverns and bars in North Bend, it was an old logging town.
We laughed about it, and they left. They were heroes. They saved my life.
And after they left, despite the steroids and epinephrine, I fell asleep. Surviving that day was probably the most exhausting and taxing experience I have ever had.
