Interstate Adventures

I have lived life to the fullest with Addison’s Disease. I have run marathons, completed half Ironman distance races, and countless other triathlon and run races. I have traveled solo in France for a month. I have skied faster than I should. So when van life called, I answered yes without hesitation. 

I never knew what it was like to live in a van…..with Addison’s Disease. So, when we took off from Boston to Seattle to visit our daughter and son-in-law, I packed up three months of hydrocortisone and fludrocortisone. These are just two of the ingredients in the pill salad I take every morning because the outer cortex of my adrenal glands does not make any cortisol or aldosterone, which are life-sustaining hormones. 

During the first two weeks of our three-month camper van adventure, as we traveled west the thermometer traveled north. People with Addison’s Disease do not make aldosterone, a hormone that helps retain sodium in the body. Heat can cause lethargy, dehydration, and in extreme cases can increase the risk of an adrenal crisis which can lead to death if not treated immediately with emergency medication. 

I remembered my endocrinologist reminding me that it’s okay to increase fludrocortisone during the summer. I was glad that I recently took his advice and increased fludrocortisone from .1 mg to .15 mg. I also realized how much better I felt after I added electrolytes to my water bottle. This is when I thought, if I degrade like this in the heat, what happens to my medication? 

I never thought much about storing these pills. My house stays between 65 and 75 degrees. I usually only carry what I need in pill form along with two emergency intramuscular injection needles and vials of Solu-Cortef. 

This trip was different. During the first two weeks as the temperatures climbed daily to over 100 degrees and never went below 70 in the evenings. Even with the air conditioning trying its best, it was hot. I began to worry about what this heat could do to this physiological dose of steroids that keeps me alive and with enough energy to hike and bike. 

For the first time in 15 years of living with Addison’s Disease, I looked up the temperature hydrocortisone and fludrocortisone tablets should be stored at to maintain their stability and strength. 

For my brand of fludrocortisone, storage temperature between 59-68 degrees Fahrenheit is acceptable. Avoid direct sunlight and a hot vehicle  (FDA Drug Label, Daily Med).

For my brand of hydrocortisone, 68-77 degrees Fahrenheit is recommended. Avoid refrigerator, freezing, and humid environments  (FDA Drug Label, Daily Med).

We were exceeding these temperatures consistently even with the air conditioner on. I had to figure this out.

When I first started to become concerned, we were in Madison, WI staying at a municipal campground not far from a Walmart.  The solution I found was to buy a small cooler bag and two small ice packs. I also bought zip lock bags to ensure the bottles would stay dry. I rotated the ice packs and kept the cooler bag open so it did not get too cold.

Then the heat overcame us and our van when we were at Belle Fourche Reservoir in South Dakota. Read the whole story here.

As we continue on our journey, in addition to reminding myself to take the pills every day in the morning and afternoon, I also have to remember to keep the pills stored correctly.