The Cortisol Pump Saved my Life- Lauren’s Story

Adrenal Alternatives Foundation’s main mission is to provide access and education to “adrenal alternatives” for those who suffer from cortisol deficiency.

For some patients, oral steroid medications are not adequate enough to maintain quality of life, therefore, alternative cortisol replacement methods are a life saving intervention.

Below is an interview with Lauren, a cortisol pumper whose life was saved because of the cortisol pumping method!

Q-Please introduce yourself?

A- Hi, my name is Lauren Michelle and I am 23 years old. I’m a former ballerina turned chemist turned full time chronically ill patient. I am nearly done with my Bachelors of Science in Chemistry, started up at Northern Arizona University, but because of illness I have had to move back home and am finishing the degree at Arizona State University. Currently though I am on medical leave and training my German Shepherd puppy Nova to be my service dog.

Q-What country do you live in?

A- The United States of America. Specifically  the state of Arizona.

Q-What form of adrenal disease were you diagnosed with?

A- At the beginning of 2020 I was diagnosed with Adrenal Insufficiency at the hospital after an acute adrenal crisis. I had zero basal cortisol that they could detect, and then the stim test came back as 0.55 cortisol. Later in the year I was diagnosed as Addisons with further testing and more symptoms showing up.   

Q-Can you tell us about your pump that helps you manage your adrenal disease?

A- Before getting on the pump, we tried EVERYTHING to manage my Addisons. The hydrocortisone oral tablets, a liquid formulation specifically compounded for me, and even IV solu cortef. I have malabsorption of my small intestine, and also suffer from MCAS including a lot of idiopathic anaphylaxis. For about 6 months I was in a cycle of anaphylaxis and adrenal crisis due to flare ups because of inconsistent cortisol levels and absorption. Since being on the pump I have been able to stay on maintenance replacement dosing for the first time since being diagnosed. I can micro titrate the amount of hydrocortisone that I need when I feel low, and I don’t have to sit there guessing how much steroid I need with the pills or liquid formulation. Sometimes I only need 1 mg more to get my body back on track, whereas before the pump that was NOT an option.

Q-What made you decide to get on the cortisol pump?

A- I realised I wasn’t absorbing pills when hospitalized for most of the month of June 2020. The doctors helped me to transition to liquid hydrocortisone. This bought me some time before my stomach completely stopped working. I started to have to give more of the liquid to just remain stable and out of crisis. When I heard about the pump I knew I needed to be on it, as I was not stable at all on anything else we had tried.

Q- Was your doctor supportive of your decision to start pumping?

A- I had to see a different endocrinologist than my main one, as she had never done cortisol pumping but was fully supportive of the idea for me. Once I found an endocrinologist who knew how to program and monitor cortisol pumping than the one I was seeing, both endocrinologists and all of my other specialists, specifically my allergist and immunologists, were very supportive of the pump. One of my doctors literally told me they thought I was going to die last year because of how poorly my body was responding to other forms of treatment. I can say with confidence that I felt the same way. I couldn’t stop crying tears of relief and joy once I got on the pump. 

Q- Did your insurance cover your pump and supplies?

A- I am one of the fortunate ones where my insurance has covered my Medtronic and supplies. I think this is because I had been hospitalized almost every month in 2020, that or in the ED to treat an adrenal crisis. Literally anything to keep me out of the hospital. 

Q- What is something you wish you could tell all adrenal disease patients?

A- Something one of my favorite ED nurses told me when I was first diagnosed was that during her first year of diagnosis (she also has adrenal insufficiency) she thought she was going to die, but once she figured out what worked best for her body she has been fine ever since. I am thankful she told me that. I wish someone had told me that adrenal insufficiency treatment isn’t one size fits all. That you are going to feel overwhelmed. That steroids will make you gain weight. That this will be one of the hardest diseases for you to manage throughout your lifetime. But you WILL be able to manage it. To trust yourself, as the longer you live with the disease (or knowledge that you have the disease), the better you are going to know your own body and what to do to keep it functioning. No one is going to fully understand what you are going through, especially because it is a rare disease. Don’t be afraid to advocate for your health needs, and be sure to keep a log of symptoms and dosing.

Q-How has adrenal disease changed your life?

A- In a very strange way it has brought me so much closer to my family and specifically my mom. We were never the closest growing up but when I was diagnosed she essentially became my caregiver. I treasure this relationship so much. I have faced a lot of life or death situations in the past 4 years leading up to the diagnosis, so my perspective on what is important in life changed drastically. Before, I was so career driven and independent, but now I see that school will always be there and it doesn’t actually matter how long it takes to get through it. I learned quickly that the friends who are true friends and love you will be there for you no matter what, but I have lost a significant amount of friends due to having to deal with my own health. Overall I have been incredibly humbled and grateful since diagnosis, and have so much more empathy for others.

Q-Do you think the cortisol pump has improved your life?

A- 2020 I was so so sick, all of the time. Since getting on the pump I have finally begun healing. My doctors believe that I never had a consistent amount of cortisol in my body until I got on the pump, so I spent last year fighting for my life often because of malabsorption issues. Since starting the pump I finally have a basal cortisol level, making it possible to tackle a lot of my other health issues. If it were not for the pump I do not think I would be here today.

Q-What is a quote that you live by?

34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:34 
 9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. – Joshua 1:9

You can follow Lauren’s journey on her instagram or tiktok at the handle: @cortisol.queen

For more information on cortisol pumping visit the links below.

Podcast- Everything you need to know about Cortisol Pumping-https://anchor.fm/adrenal-alternatives-foundation/episodes/The-Cortisol-Pump–Everything-you-need-to-know-e7otis/a-at1ej4


Guide to the Cortisol Pump-https://drive.google.com/file/d/13BYRCaXSslDECc3bEuu15aWaN2yxx9fM/view

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or advice.

We appreciate all contributions which allow us to further our mission, Education, Encouragement and Advocacy for all adrenal disease.

Donate to Adrenal Alternatives Foundation

The Cortisol Pump Saved my Life

This is what undiagnosed adrenal insufficiency looks like.

I was 96lbs at 5’4. My hair was falling out. I was fatigued. I struggled to breathe. My anxiety and mental health was slipping. I was 22 years old, dying and I knew it…….but I had no idea why…….

Notice the sea salt in the background?

I was craving it and eating it like candy.

I went to countless doctors, specialists and medical professionals, who never could find any answers.

Then, tragedy struck, I had an adrenal crisis on my 23rd birthday. Below is the lab result from my blood cortisol level test. After this result, I was transferred to Cleveland Clinic Florida, where they administered an ACTH Stim test, which I epically failed. I was then diagnosed with primary Addison’s disease and started on hydrocortisone and fludrocortisone.

After my adrenal crisis, my life was never the same. I struggled to stabilize on the oral steroid tablets due to malabsorption issues stemming from my congenital disorder, Medullary Sponge Kidney. My weight went up and my quality of life went down.

Research shows that adrenal disease patients diagnosed after an adrenal crisis are statistically less stable than those who are diagnosed never having an adrenal crisis.

This was definitely the case for me. I watched my life crumble. After my adrenal crisis, I suffered central nervous system damage and not only was unable to work, but also struggled to put pants on, hold a spoon and ever shower myself.

I was only 23 years old, facing a bedridden reality where I had to face my own mortality. I went to doctor after doctor, just hoping for a miracle, to no avail.

I was determined to get my life back, so I began obsessively searching for ways to improve my health. I was fortunate to come across Professor Hindmarsh’s book, Congenital Adrenal Hyperplasia where he mentioned the cortisol pumping method.

I knew this method was my best chance at stabilizing with my adrenal insufficiency. Over the next two years, I pursued this treatment. I visited countless endocrinologists in hopes that they would write my prescriptions for the pump, the medication (solu-cortef) and the supplies to begin cortisol pumping, again, to no avail. I was met with the answer of NO on every occasion, citing the reason “adrenal disease is just not managed that way” or “It’s not FDA approved.”

After two years, I finally found a local nurse practitioner who was willing to write the necessary prescriptions. Victory, finally….

……..or so I thought.

I quickly discovered how difficult it was to obtain insurance coverage for an infusion pump if you are not diabetic. Even though I had FINALLY found a doctor willing ti write the prescriptions, my insurance not only denied the pump and the supplies, but also denied the solu-cortef medication as well.

I appealed the decision from the insurance company and continued to fight to start the cortisol pumping method. Florida Blue never approved my request.

It amazed me to see how difficult it was to start the cortisol pumping method. There were so many obstacles to overcome. It was then I realized that there was a massive deficit in the world and I was going to do all it took to fill that deficit, not only for myself but for every adrenal disease patient suffering as I was.

That was the day Adrenal Alternatives Foundation was born.

No longer will we have to scope out ebay, craigslist and internet sources for infusion pumps or supplies. No longer can doctors tell us this method isn’t possible. No longer will anyone have to feel insane for attempting a new method to manage their cortisol replacement.

Adrenal Alternatives Foundation is proud to have a clinical team eager to direct adrenal patients, families and physicians to all possible options to manage adrenal insufficiency.

We are also pleased to be aligned with the organization CR3 to provide pumps and supplies to adrenal patients need them; with or without insurance coverage.

The cortisol pumping method saved my life. Though it is not a cure for adrenal insufficiency, it is allowing me to live my life in a way that was not possible on cortisol tablets.

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Click HERE for more information on cortisol pumping.

You can also read more about managing adrenal disease in the book, Adrenal Insufficiency 101, Patient’s Guide to Managing Adrenal Insufficiency.

The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and are guiding adrenal disease sufferers to every possible resource to manage their health.
EIN: 83-3629121.

We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.

Donate to Adrenal Alternatives Foundation

Special thanks to NP Photography for sponsoring our Adrenal Awareness Photography Session.

Adrenal Insufficiency 101: A Patient’s Guide to Managing Adrenal Insufficiency

When someone has adrenal insufficiency, they are faced with the task of not only replacing a life-sustaining hormone, but also replicating a failed body system. Artificially managing cortisol is a complex task and is vital to quality of life. An adrenal patient’s personal cortisol needs may differ from day to day depending on physical, emotional and environmental stressors. This book is a patient’s guide to managing adrenal insufficiency.

We are proud to announce this book as a collaborative project of the Adrenal Alternatives Foundation, Inc.

This book contains factual information supported by credible medical sources, patient surveys and personal testimonies of real adrenal patients.

This book contains the following:

Chapter 1:Understanding the Adrenals 

Introduction

Terms to Know

Adrenal Conditions/Diseases

Symptoms

Diagnostics

Standard Treatment for Adrenal Insufficiency

Steroid Equivalent Dose Conversion Chart

 

Chapter 2:Managing Life with Adrenal Insufficiency 

Exercise

Nutrition

Weight

Mindset

Alternative Options

 

Chapter 3:For Family Members/Caregivers/Spouses 

Basic Necessities

Managing an Adrenal Crisis

Emergency Medical Protocols

 

Chapter 4:Critical Care 

Patient Perspective VS Outdated Research

Emergency Room Guidelines

Surgical Guidelines

 

Chapter 5:The Cortisol Pump 

Subcutaneous Cortisol Injections

What is the Cortisol Pump

How to Start the Cortisol Pumping Method

Pre-pump Lab Assessments

Establishing a Pumping Care Plan

Life with the Cortisol Pump

 

Chapter 6:Miscellaneous Care Concerns 

Blood Donation

Pregnancy

Alcohol

Cannabis and CBD

Hyperbaric Oxygen Therapy

 

Chapter 7:Conclusion

Adrenal Alternatives Foundation

Sources/References

About the Author

Dedications

It’s time the truth of adrenal disease was told.

Celebrating Rare Disease Day 2020

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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

For #RareDiseaseDay we invite you to join us with the
AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on ALL ADRENAL DISEASES!

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Rare Disease Day is February 29, 2020

To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #RareDiseaseDay and #AIButterfly!

You can edit your photo with the template download here!!

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Or, if you’d like us to edit your awareness photo send your photo to adrenalalternatives@gmail.com

 

We hope you join us in raising awareness for all adrenal disease!

Interview with Julia Anthony, Founder of SOLUtion Medical

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Adrenal Alternatives Foundation is proud to be an affiliate with SOLUtion medical, which is creating auto-injecting technology to manage adrenal crisis. We were privileged to sit down with SOLUtion’s Founder, Julia Anthony, for an interview regarding her work in the adrenal community.

Q- Please introduce yourself.
A-Julia Anthony. I’m currently 27 and live in Philadelphia, PA.

Q-How were you diagnosed with AI?
A-I was diagnosed with Salt-Wasting Congenital Adrenal Hyperplasia (SWCAH) at birth.

Q-What are the challenges you see within the adrenal community?
A-I’ve had to teach people about SWCAH my entire life – friends, family, classmates, coworkers…paramedics, ER staff, and the nurses at the Universities I attended. While the former is somewhat understandable, the later is not. This is not to say self-advocacy isn’t important. On the contrary, it is vital. However, awareness about adrenal insufficiency is significantly lacking, even within the medical community. In some ways, adrenal insufficiency and the conditions that cause it are hidden and become clinically significant only during times of physiologic stress. For this reason, people unfamiliar with adrenal insufficiency and adrenal crisis sometimes have a hard time understanding the life-threatening severity of such conditions. The need for continued and improved systemic awareness about adrenal insufficiency, adrenal crisis symptoms, and how to properly administer life-saving medication during emergencies is paramount.

Q-How would you address those challenges?
A-In addition to incorporating user feedback into its design, SOLUtion aims to broaden the scope of public knowledge regarding life threatening adrenal insufficiency conditions. SOLUtion is proud to be collaborating with, among others, Adrenal Alternatives to promote awareness.

Q-What is one thing you wish the medical endocrine society understood about managing adrenal disease?
A-I remember being carried over the shoulder of my mother through the emergency bay doors of Temple Children’s Hospital; life a swirl of lights and noise, too tired to purposefully move yet my body shaking with fever. This was one of many adrenal crises I experienced when I was little, and each door we passed through felt like peeling away the layers of an onion, each portal one checkpoint closer to a hospital bed and some relief from the aching, vomiting, and headache. After having experienced many “tune up” visits to the emergency room, the reverse scenario became a sharp reminder that each door we walked out of led me closer to a world of people with varying degrees of understanding and empathy towards my medical situation. While doctors, support groups, and immediate family are bubbles of knowledge, help, and hopefully comfort, managing adrenal insufficiency conditions and relating to the rest of the world can be challenging. Though some of these frustrations are outside of my control, others, like awareness, can be changed. I hope members of the medical endocrine society realize this discrepancy and utilize their power to learn not only with their fellow members, but also teach the many people not a part of the Society.

Q-Tell us about your upcoming Twistject product?
A-I founded SOLUtion Medical out of personal experience struggling to properly use the current Act-o-vial® delivery system in times of adrenal crisis. The current standard of care in times of adrenal crisis for these conditions includes an Act-o-vial® requiring an average of twelve user steps for injection. The Act-o-vial® delivery system was designed to be utilized by trained medical personnel and not a layperson or an individual living with adrenal insufficiency. If a patient is in an adrenal crisis this is extremely difficult, if not impossible, to self-administer. The TWISTJECT™ autoinjector by SOLUtion provides users reliable life-saving care and reclaimed confidence in times of adrenal crises. TWISTJECT™ is an all-in-one reconstitution device specifically for drugs that require resuspension and injection in emergency situations. TWISTJECT™ (1) stores the diluent and powdered medication components separately (2) mixes the diluent and powdered medication, and (3) auto-injects the reconstituted medication.

Q-What challenges are you facing while creating this product?
A-Designing a functionally reliable device and that speaks to all stakeholders’ needs, including but not limited to the end user and the medical community, is and will continue to take creative problem-solving skills.

Q-Best case scenario, where you do see SOLUtion medical in ten years?
A-SOLUtion’s TWISTJECT™ will be in the purses, backpacks, and sports bags of people throughout the United States and Canada, if not other parts of the world. SOLUtion’s collaboration effort with Adrenal Alternatives and other adrenal insufficiency Foundations and Organizations will result in improved awareness, including a mandatory nationwide CEU course for medical personnel. Lastly, I hope to address the lack of emergency medication on airplanes for those with adrenal insufficiency.

Q-What is the main thing you want the public to know about your product?
A-As a young woman with Salt-Wasting CAH, I’ve set out to solve a long-overdue problem. It is time end-users’ voices are heard and their feedback incorporated into the design of the product they must use to save their lives. TWISTJECT is designed to be as complex as human and as simple as possible. By coming together as a community of people with rare diseases, we will continue to forge ahead and make a difference.

Adrenal Alternatives Foundation is joining SOLUtion Medical with their social media campaign #SubmitMyKit to raise awareness!

Details below-

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Thank you, Julia for interviewing with Adrenal Alternatives. We are thankful for the work you are doing and proud to be an affiliate with SOLUtion medical!

For more information on Julia’s TWISTject device, please visit her website – https://www.solutionmedllc.com/