Monday, September 5, 2016

Disqualified for 3 Months - A Devastating Setback

I wrote about being a volunteer research participant for a new experimental treatment for peanut allergies in my last blog post.  I was really excited to be part of this.  I was scared, mostly because being part of this study involved eating peanut protein, but I was thrilled to be part of the research to help find a treatment and cure.  Yesterday I found out that I have been disqualified for three months.  They may not still be enrolling new participants in three months.  And today, I am really bummed out.

Most of the mental energy I spent was dealing with the terror and fear of intentionally doing something that might kill me (eating peanut protein), and then after that of course, trying not to die (anaphylactic shock).  Mostly.  But today, I am sad because there was this other part of my mental energy that I was mostly not aware of until now.

I was secretly hoping that the treatment would work and that my life would be more normal, and my peanut allergy would be less severe.  Being less allergic to peanuts would mean that I'd be able to eat at Chinese, Vietnamese, and even Thai food restaurants!  My good friend was planning to take me to a Thai place where she told me she really wanted me to try a few delicious non-peanut containing menu items.  I guess I won't be able to eat that yummy food.

I am really sad about the chocolate factory.  There is a chocolate factory in Fremont and I was planning to take a tour after the study concluded and eat all the chocolate I cared for.  I can't eat any of the chocolate now because all the chocolate is made on the same equipment as peanuts.  A trace amount could set off a potentially fatal reaction.  I guess I won't get to eat that chocolate.

And most of all, I was excited for the possibility of being less allergic.  I was thrilled about being more like other people, having more options for food available to me.  Living in less caution, and vigilance.  Eating is a relaxing and nourishing experience for people.  I want eating to be more relaxing and nourishing for me, instead of a life or death game of Russian Roulette.

I just want to enjoy the normal, nice things people do, like when someone brings a dozen donuts and pastries for their coworkers.  I have watched my coworkers and friends eating these treats, with pleased and happy looks on their faces.  I cannot eat the donuts.  I must not eat that food.  Cross contamination.  The donuts could kill me.  To me, that box of donuts is like a box of venomous spiders and snakes.  That table everyone buzzes around is not a safe place.

It would be nice to feel a little more safe.

After my monster allergic reaction for science, I went home and slept.  I called out of work the next day.  I was too sick and weak.  My asthma flared up terribly.  I took prednisone.  My asthma got a little better.  I went to work the next day.  My asthma was still flaring up.  I took prednisone, as directed by my former primary care doctor, but less.  The next day, I still struggled to breathe.  My lungs were pissed off that I ate peanuts.  I took less prednisone then I had taken the day before.  I took half a prednisone the day after.  I couldn't not breathe.   I didn't want to return to the hospital.  I would have ended up with a bill for a nebulizer treatment and a prescription to take prednisone.  I've been hospitalized dozens of times for my asthma.  I know the drill.  I know how these things go.

When I returned to the next peanut experiment appointment, I was honest.  About my terrible asthma and about taking prednisone.  The doctor said that this disqualified me from the study for three months.  Which isn't fair because I only had to take that awful prednisone because I ate peanuts for science.  But the rules are the rules.  And I still think that honesty is the best policy, and I am going to continue to be extremely honest always.

Would I have taken the prednisone if I had known it was going to prevent me from being in the study?  I don't know.  Probably not?  I'm not sure.  Large red spots appeared on my body, and disturbing sensations of itchiness occurred several times in the days following the allergic reaction.  I struggled to breathe and I wheezed through suffocating asthma.  My immune system was still trying to kill me.  The prednisone seemed like the only way of telling it 'Hey, calm down, stop reacting, I don't want to die.'

The medical and scientific team told me that my reaction was the worst they had dealt with so far in this study.  They are going to make some adjustments to make the study safer for participants in the future.  Medical science and I learned a lot from my severe allergic reaction.  I may be on the sidelines for now, but I am still cheering for my awesome team!

Yesterday, I hiked up Skyline trail on Mt. Rainier.  I laid on a frozen lake of snow and ice.

The view was incredible.  My life is amazing, and I continue to live it as fully as possible.  I hope that I'll be able to participate in three months, but even if I'm not able, I will continue to advocate, to write, create, and be awesome.  Thanks for reading everybody, and please subscribe to my blog, -it's free!

Wednesday, August 31, 2016

Dying for a Cure

My deadly peanut allergy is an invisible demon that lurks in my body.  It hides in my bone marrow and blood, waiting for any trace of peanut protein to come into contact with the six trillion cells of my physical body.  If I accidentally eat peanut protein, a catastrophic allergic reaction called 'anaphylactic shock' could kill me.

Living with a deadly allergy is a life of anxiety, fear, avoidance, and constant, constant vigilance.  I read ingredient labels, I constantly scan the environment, I don't eat out at restaurants with peanuts on the menu or in the kitchen.  This allergy affects every aspect of my life, all day, every day.  I would do anything to help cure, or treat this awful condition.  And the Monday before last, I did.

After an entire life of strict avoidance, I intentionally ate applesauce laced with peanut protein for the first time ever.  I did it for science.  I did it to help find a treatment, and maybe eventually a possible cure.

I consumed 44 milligrams of peanut protein.  This is the equivalent of a little less than an eighth of a peanut.  I became violently ill and went into anaphylactic shock.  Had I not been in the hospital, I probably would have died.  I vomited.  I had diarrhea.  My skin turned beat red and my entire body burned from the inside.  I basically had Ebola for three hours.

The good doctors and nurses emptied their entire arsenal of emergency medication into my muscles and veins and managed to reverse the severe reaction.

I had come back from the brink of death again.

I recently enrolled in the Palisade Trial to investigate an experimental treatment for peanut allergies. I have been afflicted with peanut allergies since I was 15 months old.  Here's their website:

My peanut allergy is ridiculous, brutal, stigmatizing, and horrific.  I blog about it.  Obviously.  It is terrifying to navigate this nutty world, avoiding peanuts, trying not to die.  I wanted to do more than write, vent, and complain.  I enlisted in the battle.  This is my fight.  I faced my greatest fear in order to help science figure out how to treat and cure this disease. 

I printed out a piece of paper.  It had photos of nine people.  These people were young, and all beautiful.  All of them are dead.  They all died from accidentally eating peanuts.  Fuck this awful disease.  Nobody should have to die because they got hungry and ate the wrong food.  Nobody should have to live like this, either.

I wear an invisible badge of honor:  I survived last Monday.  I faced death, and I lived to see another day.  

I was standing in line at the store yesterday.  The line moved so slowly.  The people in the line were stressed.  It was very hot.  I looked at the people.  I saw the cashiers ringing up items.  I noticed the managers standing around talking.  After overcoming death, the business of life goes on.  Nobody saw my invisible badge, but it was there. I savored and appreciated the moment and felt compassion for everybody in that whole store.  I bought a casual pair of stylish dark gray pants.  

I did all of my laundry at the laundromat Wednesday.  I went to the store and bought detergent beforehand.  The clerk was tall and had interesting glasses.  I fed my kitty cat today, then I cleaned his box.  The boring, tedious, mundane chores are sweeter.  Life's more precious to my heart this week than it was last.  This is a real gift.  Slowly this state of mind will dissolve and I'll take everything for granted again, but I'm enjoying my moments.  After having a near deadly allergic reaction, I deeply realize that every moment is a second chance.

This week, I've been less frustrated and angry.  I've had a more positive attitude.  It's been good.  My body is healing from the massive inflammation, and the steroids have made sleeping a struggle, but healing is happening.  

The excruciating pain of an anaphylactic allergic reaction is almost indescribable.  My palms, the entire surface of my body itched.  My skin swelled up with welts all over my body.  I turned red.  I felt my body burning.  I felt my throat swell up.  That was exceptionally terrifying.  I felt two injections of epinephrine, one in each arm.  They didn't feel like anything, tiny little drops on an agonizing sea of fiery pain.  I tasted the crystalline salty ice of the saline solution the nurse injected into my veins on the roof of my mouth.  The medicine affected my perception.  I lost track of what was happening, lost track of conversations, I was so sick, and confused.  I remember drinking ice water.  It was nice and soothing to drink while my body felt that it was on fire.  I remember the nurses going with me when I had to go to the bathroom.  I was very happy about that.  I remember getting up out of the hospital bed and wanting to run away from the pain.  But I was trapped in this swollen, red, reactive body.   And then I had a panic attack.  Or maybe it was the anaphylaxis affecting my consciousness with a sense of impending doom.  I think that I suffered the most during this panic attack.  Fear.  Terror.  Blind panic.  Looking down at my hands, I saw that my fingers were swollen like sausages and I became overwhelmed with dread and anxiety greater than that I have ever known.  My ring would not come off my finger.  I was trapped in metal, being measured by instruments, and the medical team kept pumping more and more medicine in my IV.  I was initially very disappointed in myself, for letting fear take over. The compassionate nurse iced my swollen fingers, and tried to keep me calm.  I was very grateful that she was there helping me.  On reflection, maybe the panic attack was my brain's way of squirting out more epinephrine to help reverse the reaction.  My face was red hot.  My neck and back boiled.  Red welts covered my legs.  My asthma flared up and it was a struggle to breathe.  I took a couple of nebulizer treatments.  

And then slowly, the the medication subdued the reaction.  The allergic reaction subsided.  The welts started disappearing.  The redness drained from my skin.  The fire burned itself out.  I started to feel a little better.  Life goes on.

I won that battle.  I emerged victorious.  I did the thing that I fear the most.

Tomorrow, I have another food challenge.  I eat more peanut protein.  It's cool.  I got this.  I have emerged from this experience with a deep intuitive knowledge:  I already went through the worst case scenario: eating peanut protein and violently going into anaphylactic shock.  I tackled it, and I nailed it.  Even if the worst case scenario happens again, I dealt with it once.  My medical team and I can do that again if we had to.

We won this battle.  We are poised and ready to win the war.

Sunday, May 29, 2016

Restauranteur Convicted of Manslaughter in Peanut Allergy Death

As a person with peanut allergy, I am reluctant to eat at restaurants that have any peanut items on the menu.  A kitchen with peanuts is a kitchen that could cross contaminate my food.  My general rule is that I don't eat at any Thai, most Vietnamese, some Indian, and Chinese restaurants.  

Before I go out to eat, I call the restaurant and ask my questions.  I look up the menu online and I scan it for signs of peanut.  Eating at a restaurant is a pain for me and something I don't entirely feel safe doing.  I am as careful as possible.  

When I was around 12, my mom took me out to eat at the Bamboo Garden, a vegan Chinese restaurant.  The waiter assured us that the restaurant would be careful and not use the same cookware to cook my food.  He said that my dinner would have no peanuts.  He lied.  20 minutes later, I was in the Group Health Emergency Room fighting for my life.  My mom complained to the manager,  and I have never eaten there since.  This experience left me with a deep distrust of vegan and Chinese food.  The waiter who lied, and the sloppy kitchen staff who used very cross-contaminated dishes were never punished for hurting me, and causing my violent reaction.  

To my knowledge, historically, restaurants have been dodging responsibility for the suffering, pain, and sometimes death they inflict on people with food allergies.   People with food allergies are usually blamed for their carelessness in eating questionable food.  

Education about food allergies and the dangers of cross contamination should be required Public Health knowledge to obtain a Food Handler's Permit.  Currently it is not, and that needs to change.  And with this landmark court decision, hopefully it will.  

I have been following this trial for a few weeks.  The jury reached a decision, and they convicted the owner of an Indian restaurant  for the death of Paul Wilson, a customer who was allergic to peanuts.  The server wrote 'no nuts' on Mr. Wilson's take out meal.

I am not usually concerned with the proceedings of trials, court hearings, mostly because legal transactions bore me.  However, I followed the news stories about this case with enthusiastic interest.  I had a burning desire to see if the legal system would serve justice.  Would the court find the restaurant responsible?  Would this decision make restaurant food safer for people with severe food allergies like me?  Would restaurants think twice about lying to their customers in the future, if a guilty verdict was reached?  

I was overjoyed when the jury convicted the restaurant owner.  Justice at last!  I hope that this decision makes restaurant food safer for people with deadly food allergies.  

Saturday, May 28, 2016

Recent Reaction!

A couple of weeks ago, I was eating my snack while driving home from work.  My snack was coconut cashews from Trader Joe's.  It was a prepackaged bag of nuts.  The warning on the bag said "Manufactured in a facility that also manufactures other tree nuts."  I have eaten this snack for years.  I like cashews, and I like coconut, and combined they are a great snack!  Creeping along in heavy Seattle traffic, I bit down, and realized that my mouth was no longer tasting the sweet, wonderful taste of cashews, but rather the nutty, roasted, rich taste of peanut!

I was in mid-swallow when I realized what was in my mouth was potentially fatal.  Luckily, I always carry a vomit bag in my car, so I gathered up the bag and spit out the remaining contents of my mouth.  Seattle has awful traffic, and I was stuck!  I had a couple of choices:  pull over and call 911 and use the Epipen, or drive to the hospital using a low traffic route, and use the Epipen if my body started displaying objective signs of anaphylaxis.  I chose option B.  I thought it would probably be safer to just Epipen myself while speeding to the hospital, rather than waiting for an ambulance to take me up to an E. R. on pill hill.

Accidental ingestion is a catastrophic scenario.  If a person dies from a food allergy, accidental ingestion always triggered the fatal reaction.  Accidental ingestion is terrifying to a person with peanut allergies because of 3 things: it's unpredictable, it can occur immediately or within 20 minutes after eating the contaminated food, and finally, once the reaction progresses beyond a certain point, it's impossible to reverse with an Epipen.

So, knowing all of this, I drove myself to the E. R.   I had the Epipen hovered over my right quadriceps.  I didn't use the Epipen.  Probably should have.  Due to the possibility of  accidental ingestion.

The main reason I did not stab myself in the leg with the Epipen is that my body did not show objective signs.  No sudden asthma tightening and wheezing.  No hives.  No swollen lips.  No swollen throat.  I tasted peanut.  That's it.  This whole adventure could have been a false alarm.  Who knows?  But with deadly food allergy, it is always better to be safe than sorry.

The Epipen is painful.  Imagine taking a Philip's head screwdriver and stabbing yourself in the leg with it and holding it there for 10 seconds.  This is what it's like to get Epipened.  If it's between the Epipen or death, give me Epi.  If I am around other people, I usually get someone else to administer the Epipen, because I have a hard time doing that to myself.

I have asked my allergist numerous times to write me a prescription for a small needle kit for epinephrine like the diabetics use, and he claims that epinephrine is not sold to consumers that way.  I am a careful methodical person.  I majored in Biology and Chemistry, -it would be easy for me to pull over, get out my little epi-kit, fill a small injector with the medicine, and then inject it into my arm muscle.  That's more my style.  I could easily handle that.  I struggle with firing what feels like a nail gun into my leg.  No wonder people don't use the Epipen like they should.

In the past, I've noticed that a few weeks after a recent anaphylactic episode, I have nightmares that I Epipened myself, and after I wake up, I discover a large bruise on my leg!  I am most likely punching my leg while dreaming.  This is encouraging because it seems to indicate that my mind and body will hack my brainwaves to survive anaphylactic shock!  I'm sure I could stab myself if I was confronted with objective evidence of anaphylaxis, (sudden wheezing and asthma, hives, face swelling, vomiting, diarrhea).  

There should be an alternative delivery system that is not as violent and doesn't hurt as much as the Epipen.  I received vaccinations in the in the rear when I was a kid, and they didn't hurt as much as the Epipen.  There ought to be another device invented that will inject epinephrine in the arm, or the rear, a little more chill, and non-violent.  I sure hope big pharma manufacturers read my blog, and create this!

Once I got to the Emergency Room, I parked in the 30 minutes or less space right by the automatic sliding glass entrance doors.  I went in and explained my situation to the triage nurse.  I sat down by the aquarium.  I tried to relax and watch the fish.  This was to be my last moment of relaxation and healing for the next 3 hours.  My name was quickly called.  I explained what happened to the next nurse.  My vitals were normal.  My pulse was fast, 100 beats a minute!  I was scared as hell!

I was taken to a small room and a doctor looked over my chart, took my vitals again, and decided I did not need epinephrine.  She noticed that I was getting a red rash and she was concerned about how my asthma sounded, which was slightly worse than baseline.  She ordered IV Benadryl and left.  A nurse hustled me to a new location.  The Emergency Department of UW was getting busy and they needed the room.  My new address was a gurney in the hall.  I changed into a hospital gown and orderlies attached sticky monitors to my chest and back.  A blood oxygen pulse counter was clipped to my finger.  An IV catheter was inserted into my right arm.  The IV was very painful.  My arm ached with dull, throbbing pain.  It hurt so bad I couldn't move it, and after about 20 minutes, my fingers started to tingle.  I was trapped, wired to the hallway heart machine monitor laying on a bed in the E. R. hall, my right arm frozen in agonizing pain.  I was at my most vulnerable.

Despite my physical restrictions, I was able to take a couple of decent selfies...  With my left hand!

I was having a really good hair day that day.

I talked to a couple nurses about the intense pain that the IV in my arm was causing me, and they were unsympathetic.  A terse nurse told me that she could take it out, but she's have to "Stick me again."  I decided to leave the catheter of pain in.  My arm was shot up with diphenhydramine and then I felt dizzy.

Light-headed, helpless, and exposed, I took a look at what was going on in the E. R. and allergies became the least of my worries.  About 15 feet away, the nurses had locked the door to a patient room.  The person inside started to pound the door. 'Bang! Bang! Bang!'  I could see, hear, and feel the door shake.  A nurse called security, and security guards swarmed around the door and the person inside calmed down.  The people who handled the situation started to disperse.  Now I could relax and focus on healing.

That's when I heard the screaming from a room behind me.  The screaming died down.  It was not a full moon that night.  What was going on?

I asked about the screaming, and the nurse explained that the person screaming was now calm because they had ordered his dinner, and he now seemed fine.  I took a deep breath.  Everything was going to be alright.  I was going to be okay.  I heard a loud commotion start behind me: screaming, a struggle, a door being forced open, and a tray full of food whizzed by my head and hit the wall opposite me.  Nurses, orderlies, and security ran past me to subdue the patient who was freaking out.  They seemed to have succeeded because the noise calmed down.

An orderly started to clean up the broccoli and food splattered on the wall.  I looked at him and said, "I guess the food here is terrible and I think he didn't like the broccoli."  The orderly and I laughed.

I was completely terrified.  After 3 hours of observation with no noticeable symptoms of anaphylaxis, the next nurse just who had just arrived to the next shift okay'ed me to be discharged.   I paid whatever it was they charged me, like $300.

What an adventure!  I am very grateful that I didn't get very sick.  This experience had positive aspects that will help me be a better person.  I made some mistakes, and I learned from those mistakes.   I got to practice my skill of being a hospital patient (I am very good at being in the hospital).  Living with deadly allergies may be terrifying at times, but it's not as catastrophic as the fear in my mind sometimes makes it out to be.  Experiences like this have made me extra-ordinarily resilient.  Now, I have a greater appreciation for all the little things in life, and I have noticed I seem to have increased compassion and patience for the people around me.  Thanks for reading my blog.