Sunday, April 19, 2015

An Open Letter to Senators

I will never forget April 19th, 2013. That was the day that I firmly believed I was going to die. I was alone, crashing rapidly towards an Adrenal Crisis, and the medical community was grossly mishandling my care. Due to their delay in my treatment, I am still working on regaining my strength two years later.

Currently, many states (including my own) forbid ambulances from treating us. Isn't that beyond ridiculous? Our lives apparently are not worthy of saving. Adrenal Insufficiency United is petitioning to change that. I wrote the following letter to be presented to Senators to help support AIU in their cause. Feel free to share this with anyone and everyone. Let us raise awareness about Adrenal Insufficiency so that the horror stories of mistreatment by medical personal are eliminated.

"Ask me about life-saving steroids."
My name is Amber and I live with Primary Adrenal Insufficiency (PAI). I was diagnosed in 2005 at the age 15 after over a decade of searching for the reason behind the chronic illnesses and fatigue. In the years since proper diagnosis, I have come close to death due to the lack of proper training of first responders and emergency medical personnel on a number of occasions but also specifically in Scottsdale, AZ (2006), Bellingham, WA (2010) and most recently in Carrolton, TX (2013).

A clinical adrenal crisis can be sudden. However, it is more helpful to view it as a bell curve, or continuum for the adrenal insufficient patient. I presented to my endocrinologist on April 19th, 2013 with constant nausea, persistent headaches, increased fatigue, unstable blood pressure, low pulse, increased body temperature, low heart rate and low blood sugar. If she had injected me with corticosteroids immediately, my deteriorating condition would not have progressed any further.

Immediately following her visit, I was at the Primary Care Physician. Tremors ensued with extreme disorientation; episodes of blacking out began with accompanying uncontrollable convulsions. This progression would have been immediately interrupted if the physician had injected me with corticosteroids. 

Although I was presenting with an increasing number of signs of an adrenal crisis, the physician believed I would be in better care with an Advanced Life Support Ambulance, which theoretically should have been able to administer medicine and start IV fluids. Unfortunately, the EMT’s only felt the need to transport me to the nearest hospital emergency department as I was slipping in and out of consciousness. They did not administer corticosteroids and blatantly ignored my medical alert bracelet. When I arrived at the ER, the physician on call was unfamiliar with adrenal insufficiency.

His delayed delivery of proper treatment caused me to fade closer and closer towards absolute blackness.

He did not follow the NADF’s widely published protocol to administer IV saline immediately along with 100 mg solu-cortef or solu-medrol. The waste of community medical resources (time and money) was totally unnecessary. At any point in this nightmare, an immediate injection of corticosteroids (costing under $10 a vial) would have stopped the crash. With each delay in treatment, the cost (both monetarily and physically) increased drastically.

In the months following my latest near death event, I visited fourteen different specialists and received several new diagnoses. By far the most crippling diagnosis is PTSD (post-traumatic stress disorder). Mayo Clinic defines PTSD as a mental health condition that's triggered by a terrifying event. Symptoms include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. My adrenal crisis happened on April 19th, 2013 but I still suffer from vivid flashbacks and horribly realistic dreams of first responders killing me due to their lack of ability to administer corticosteroids.

The current archaic protocol is taxing the already strained medical system causing needless pain and suffering. It can also easily be viewed as condemning adrenal insufficient patients to a death sentence.

I recommend a change in this protocol. Both the financial cost and risk potential to organizations is minimal. Corticosteroids are reasonably priced (under $10 per vial) and have a shelf life of 5 years. They are also a very low risk drug. One dose administered when not needed will cause no harm. One dose delayed when critically needed will cause irreversible damage, ultimately resulting in death. I prefer to remain Clearly Alive and need your help to do so.

One simple injection could have saved me so much time, money, and health.

6 comments:

  1. well said dear!

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  2. Everything you say is so good. I don't know how you got so eloquent at it really. I love to write and things. I have adrenal insufficiency, but I do not think I'd ever be able to talk about things the way you do. I would LOVE to chat with you sometime. Not for the documentary that I'm doing that I talked about earlier, just talk because I think you are amazing and we could definitely swap some stories and give advice, although you seem better at the advice even though I've had my diagnosis at 3. Maybe I spent most my life avoiding it as much as I could, as a kid, no one wants to be different so I think I spent most of my time proving to myself and to others that nothing was wrong with me, even though I had to get up sometimes and go to the office for meds or for feeling ill. So by acting like it didn't exist probably until college, I've not really retained a lot of the information from some of the people that early in my life, I had more knowledgeable specialists then.
    So yes, a really long comment but nonetheless, I get excited when you post. I am still editing, in the final stages!!!! Since I am on a deadline I don't know if I am going to be able to put your posts like I planned, BUT I have a thank you in the credits (then a second thank you that goes more in depth, so you'll have to hit the pause button because it's going to go fast).

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    1. Thank you for your kind words! :)

      This piece of writing took a bit of time to get down on paper. It is an abridged version of "The Nightmare," and that took a good two months before I could write down that experience. Each time I tried, it would trigger horrible flashbacks. Two years later, I'm able to see how this horrific experience was turned into a blessing (hehehehe... I'm married now!), so the flashbacks aren't as detrimental. Every now and then, they'll still happen and I just have to tell myself to breath deep and that I am Clearly Alive.

      I also spent most of my early years of diagnosis running from it as well. I wanted to hide away and pretend it didn't exist. I can relate so much to what you say when you tried to prove to yourself and others that nothing was wrong with you. I did the same, often to the detriment of my own health. College was a turning point for me as well. I slowly began to be more open.

      But it wasn't really until after college that I really opened up. And then this nightmare of a crisis happened. THAT was perhaps the biggest turning point. I realized that remaining silent did me absolutely no good. If anything, it caused me great harm.

      PLEASE keep in touch! It'd be fun to chat :) No idea when, as my life is beyond hectic at the moment, but yes, please keep in touch.

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  3. Also I was wondering what do you mean forbid ambulances from treating us? I have a day I was sure I was going to die. Or ha ha, maybe more accurately wished for death because I started to drift into delirium according to my mom who said no one could understand me after awhile I was talking incoherently. I know exactly what I was saying, I was saying admit me to a room. I want to die. Admit me to a room or I'm going to die. Why haven't you done it. Admit me now idiot, can't you tell I need it?.......I waited two hours to even get into the emergency room part, another half a day before I got a room.

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    1. In my city, an ambulance is FORBIDDEN from administering our injection of solu-cortef. If we are crashing towards an adrenal crisis, the most crucial thing we need is that emergency injection. All other treatment is practically worthless if we are not covered with cortisol. By not allowing the administration of our injection, they are forbidden from treating us.

      Your post makes me wonder how coherently I was talking as I continued to slip in and out of consciousness. All I remember thinking is, "They are going to kill me. I am going to die due to their ignorance."

      LUCKILY, I did NOT die. But it was definitely a traumatic experience.

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  4. hi my name is Silvia Tiedt I am from South Africa I have been living with Addison's disease since 2010 I a 23 now I have the choice to get the adrenal pump I am scared but I am willing to trai can you maybe tell me more of how it is to live with the pump and how it feels and so on it will help so much

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