I recently talked about the condition I have and how I was going up to Rochester, MN to the Mayo Clinic to get an Oura Ring as part of a study. I figured now a few weeks in I'd give some thoughts about it.

The Mayo Clinic

First off, the Mayo Clinic is super freaking cool. It's a gorgeous campus, and it was so easy to go from one area to another. It's all connected, which makes sense with the winter up there, and all I had to do was walk a bit, catch an elevator and boom I was in a whole different wing. Tons of art dot the buildings, and a few pianos which Im sure is very calming for people who are there for tough stuff. I did find it interesting they have a gift shop with Mayo-branded items like water bottles, hoodies, etc. I imagine its partly for the staff who may need a new jacket if something happened (bodily fluids etc) but also I found it kind of funny. It felt like the stores at Disney World in a way. The hoodie felt soft af though.

The initial visit

When I got to the clinic at 7:30am, I had to be fasted. Which is totally fine for me. I did have snacks though - protein bars and gummy worms. The snacks of a champion. The initial lab work included 26 tubes of blood taken, a cat scan of my left arm and left leg, a full body dexa scan, a left hip dexa scan, and a few exercise type things to establish a baseline. Then we got into the Oura Ring part and finished up with a few surveys and they let me go on my way, which was back to the Twin Cities for what turned out to be $2 beer night at the Minnesota Twins. Boy fucking howdy.

The study part

This part is pretty neat. In my last post (linked above), I detailed the condition I have had my whole life, which is a lack of cortisol production. Cortisol regulates stress (among other things), and there are so many things that can cause stress. Work, life, travel, sports, etc. So every Sunday I get an email with a basic survey asking if I encountered anything super stressful. Their idea of super stressful is traveling across multiple timezones, being sick, and a few other things. That's fascinating to me because I never considering traveling across timezones as a big deal. So far though, nothing has been a stress event that I need to report. They then ask if I've had to double up my steroids. Also no so far. Like I said in my last post, I am boring, and thats exciting.

Should I respond to a survey saying yes I did experience a stress event, and had to double up on the meds, the researchers can look at the data from the Oura Ring to see if they can correlate what led to me being stressed enough to double up medication. Pretty neat I think.

At this point, the Oura Ring is kind of invsibile to me. Except for the few moments I need to charge it, I just wear it and mostly forget about it. I check the app to see my sleep score and that jazz, but otherwise I don't do much with it. It is already scratched up though because I dont take it off when I go to lift at the gym. Oops.

The surprise follow-up

While I was there, I was told about another study. This one is a drug trial, part of an effort to see if the currently agreed upon treatment could be improved a bit. My condition is managed with two steroids: dexamethasone and fludrocortisone (Florinef). Since my condition is the salt-wasting type, the fludrocortisone is basically a salt retention tool. I have some flexibility with how much I take, either a full tablet or half. I generally take the full one since it’s been ridiculously hot this summer in Tennessee, and it helps me not feel the heat as much.

The dexamethasone is the big one, and it’s a high-powered steroid. Its role in this whole thing is to keep me alive. It does two things:

  • It acts as a replacement for the cortisol I can’t produce, and
  • it shuts down the overdrive signal my body sends when the pituitary gland senses too little cortisol and releases ACTH.

Dexamethasone is one of a few options, others being prednisone and hydrocortisone. The upside is that it’s high-powered and really good at its job, which is keeping me alive. The downside is that it’s also incredibly potent, and over time it can cause issues with weight management, sleep, bone density, muscle weakness, and more.

The drug study is to see if a new drug called Atumelnant that is in the trial phase to see if it can be used in conjuction with my current steroid usage as a way to lower my current steroids and not have my body freak the fuck out. If it works, the goal is to bring my dexamethasone dose down, which could mean fewer of the side effects I deal with now. Still early, and no guarantees, but it’s the kind of progress I’m hoping this research leads to for the next generation.

When I was told about it, I didn't even wait to say yes. And while there are screenings I have to do, this feels like a true calling and purpose that I have been wanting. If this trial works, it could be a huge improvement for younger people with this condition. Blasting myself with dexamethasone has been great I suppose since I am still alive, and currently building a playlist of the 200 best emo albums based on this list, having more options is always better and could mean an easier time navigating weight issues, sleep issues, and a myriad list of other issues.

I go back up to Mayo on 11/23 to do the initial screen. I am quite hopeful, as is the coordinator for the study. Mayo is #1 in the world for Endocrinology so I am in good hands.

Purpose

I thought about this while I drove from the Twin Cities to Rochester and back. I've been swimming in a void lately. I'm staring down 40 (thats wild), LLMs are taking over the fun parts of software engineering, and I generally have become less enamored with tech on the whole combined with some epic life burn out that I have been kind of wondering what am I doing with my life.

Doing these studies are filling me with joy. Is it fun to get delayed 6 hours because the plane's AC unit stopped working? Absolutely not. But there is joy in that I am able to contribute to science. The researchers and doctors are excited to meet me because this condition is rare and unfortunately not everyone has the availability to make trips up to Rochester. I can offer up myself so that way kids who I will never ever meet but may share this dumb condition with me can live a better life because of all of this. I think thats my ultimate purpose.