Saturday, May 23, 2015

The Cortisol Pump

Dear readers, I now feel comfortable disclosing something to y'all. I am using a Medtronic MiniMed Paradigm 715 pump to infuse solu-cortef as my main treatment for my Adrenal Insufficiency. I have been on this treatment for over a year.

Everything in my life is colorful. Even my pump.
I could not publicly announce it when I first started treatment because the door opened up in an unorthodox and unexpected way. Also, please note that the use of a pump for Adrenal Insufficiency is very contentious within the medical community. It definitely can make some doctors nervous.

Most people see this and instantly assume "Diabetes: Insulin."
I thus label my pump as "NOT DIABETIC" and "NOT INSULIN."

What the Cortisol Pump Is:

  • An alternative way to deliver our life saving cortisol steroids.
The pump is a very accurate medicine delivery system using an alternate deliver method for a known and approved Adrenal Insufficiency treatment (solu-cortef) in order to create cortisol levels similar to that of a person with a normally functioning endocrine system.

What the Cortisol Pump Is NOT:

  • A plug and play quick fix magical solution.
The pump is a very individualized treatment plan. It takes each patient a different amount of time to find their ideal dose and rates. Things are further complicated when dealing with multiple illnesses and diseases. I say this not to discourage those seeking this treatment. I just want to caution them. The pump takes work.

Resources/References:

The doctor that pioneered this method is Professor Peter Hindmarsh of Great Ormond Street Hospital in the UK. He has done amazing work for improving the quality of life and treatment for those living with Adrenal Insufficiency. A great wealth of resources can be found at his website here. Below are three links from Great Ormond Street Hospital that are useful:

Here are a few case studies:

Advice for those with Adrenal Insufficiency Wanting the Pump:

A cortisol pump is a very individualized treatment that must take many factors into account. It also requires a completely new mindset. Did this treatment drastically improve my quality of life? Yes. Does it take a large amount of work? Yes.

After using this treatment for over a year, it is my personal believe that the pump will never be the mainstream treatment for Adrenal Insufficiency. BUT there are many who can benefit from it. If you want one, the best thing for you to do is research. Do your homework. Learn the good and the bad. Present a case to your current doctor. See if there is an open door.

The data is there. This treatment works. But you must be your own advocate for it.

My medical alert bracelet has been updated.
I blacked out my last name and DOB.
You can purchase one from www.Roadid.com

Saturday, May 2, 2015

A Decade of Diagnosis

When I was reorganizing my medical binder (which is HUGE by the way), I discovered something: I was diagnosed with Adrenal Insufficiency in May of 2005.

Notes from my first endo, dated 5/13/05
I still remember my endo frantically drawing that picture as he explained to my mom and I how my adrenal glands were performing less than ideal. He explained how the adrenal glands sit atop the kidneys and are responsible for several key hormones absolutely critical to life. He explained how cortisol is supposed to peak in the morning and then slowly decrease throughout the day allowing the body to both wake up and go to sleep. He also explained that I would be steroid dependent for the rest of my life.

It is now May 2015.
I have reached a Decade of Diagnosis.
That's a pretty big deal.
I'm going to throw a party.

I love how these invitations turned out.
The word choice is deliberate. I could celebrate a Decade of Disease, but that puts the emphasis on the wrong thing. I want to celebrate a Decade of Diagnosis. A Decade of Answers. A Decade of Living with Addison's Disease. A Decade of being Clearly Alive.

I'm not celebrating the fact that I am diseased. 
I am celebrating the fact that I am Alive.
I was given a tremendous gift, and I am forever thankful.

But this party is not just about me. I want to also thank those who have walked along side me throughout my journey. Those who knew me before I was diagnosed. Those who encouraged my mom when she was terrified to see each day her daughter slipped further and further away from her. Those who have had to take me to the ER. Those who have witnessed my anxiety and panic attacks. Those who have seen me so incredibly irrational due to low cortisol. Those who are willing to look past my social flakiness due to the unpredictability of my fatigue. Those that give me a friendly reminder that I might need a little bit more HC because I'm not being myself at the moment. Those willing to drop everything to drive me home because I don't trust myself. Those willing to share their experiences so that I can learn from them. Those willing to share my story in an effort to raise awareness. Those willing to encourage me when I hit my down days. To those that invest in my life, and my journey.

Thank you.

With the help and support of y'all, I am able to remain Clearly Alive.

Now let's party.