Siete de Mayo

Happy Siete de MAYO, all,

So today we met with the lovely Dr. Coon. She is an Autonomic specialist in the Neurology department at Mayo Clinic. She’s great. She didn’t even have to use the Google to know what POTS is! Whaaaat? Anyway. So the beauty of having patience is that we kind of had Mayo to ourselves. The waiting rooms here can hold no less than 100 people.  We were two of maybe 10 in each waiting room we went to. What does patience have to do with this? Well, Mayo switched to Epic software and today was the first day so no one knew what to do and there were four people from Epic per Mayo worker which seemed a bit much. Anywho, we were warned it would be mayhem and it may take forever and we were like, “yeah no, that’s chill. I’m really sick. I’m just sitting around anyway, may as well be for you guys.” Most people rescheduled their appointments to avoid this, but it wasn’t too shabby!

I’m running on more adrenaline than normal due to my even more erratic sleep schedule… and the appointment started at 7:10 a.m… and I’m still on Portland time. So one can imagine. So she called out my shaky little self pretty quickly as I get pretty bad tremors in my hands with POTS anyways, especially with that much adrenaline.  As we suspected, she’s pretty sure I have Hyperadrenergic POTS (irregular blood pressure, heart rate, and ADRENALINE rushes). So more tests tomorrow will help figure out the best way to combat this so I can be casually alive again.

So today is the day I have been dreading: Tilt Table Test day.  The technician’s name was Jeff and he came and got me and said, “Hi, my name is Jeff,” and the thought of Channing Tatum in 22 Jump Street almost made me lose it. I was calm.

The TTT has more steps than I thought originally.  

I was laid down on a cushy bed. All comfort was soon over.

Four little monitors about one inch wide and half an inch tall were placed on the left side of my body. On my foot, inside of my calf, outside of my upper calf, and the inside of my forearm. Acetylcholine, a neurotransmitter, was then pumped into said little monitors and a first it was hot, then it was itchy and then it felt like 100s of needles. Now pain, I can ignore. It went on for maybe 10 minutes and it was uncomfortable but also pretty whatever. I don’t know if you’ve seen Law Abiding Citizen, but when a man straps you on a table and is playing classical music while putting neurotransmitters on your body, it’s hard not to think he’s going to saw you to death piece by piece. But I haven’t killed or injured his wife or kids so I think Jeff is going to be nice. No revenge job needed.

I then had to breathe deeply in and out in time with a very slow light on a machine that went up and down. I know what you’re thinking, Mariah, it’s breathing, all your doing is breathing. Yes, able-bodied humans, I was. For me, however, that is not fun. I started experiencing presyncope. Presyncope is a state of lightheadedness, muscular weakness, blurred vision, and feeling faint.  I had to do this twice. Jeff was a great technician but at some point, I felt like he was asking too much.  

The next test I had to take a deep breath and then blow into a mouthpiece and keep the pressure gauge at 40 for 15 seconds.  Again, not fun and had to do it twice. #presyncope. My buddy Jeff was blown away by the number of PVCs I was having the entire time… Premature Ventricular Contractions. Everyone has them I just have an abnormal amount on top of POTS and I can feel them and most people can’t. Such is life. That being said doable. All this was doable. Then we did the granddaddy of them all. The actual Tilt Table Test. *Que any and all dramatic music*

So I’m still laying on the torture bed and then Jeff took my blood pressure manually while the lovely Jeanie wrote down everything that was being recorded automatically.  They then traitorously raised the table 70 degrees. Now I’m strapped in but this is not fun. At 122 bpm is when I can feel my blood pressure freak out. We get there quickly. So I said out loud, “Hey guys, I am not having fun”, I wanted their mercy and got nothing.

Taking vitals minutes 1, 2, 5, 10 is standard but I started getting really sick minute 5 so they began taking my blood pressure every thirty seconds. Have you ever held a sand timer? That’s how my body felt. Like granules draining down into a different chamber. To be fair that is what is happening but there’s a heaviness to it. It feels like someone is pouring sand on me while poking my entire body with the ends of uncooked spaghetti. It’s weird but that’s how it feels mmmk? I haven’t stood upright for 10 minutes this whole year so it is the worst I have felt in a while. It took me a while to recover so Jeff and I just hung out in the room and he told me the woes of having three girls and doing their laundry and figuring out whose underwear is whose. After an additional 10 minutes of recovery, he walked me back and I found my mom in the waiting room and I chugged a large Gatorade.

I rallied and we took Mayo pictures, got the shuttle to the hotel, and I now have every intention of sleeping off this terrible feeling for the rest of the day.

The worst is over so I’m a happy camper. We start all over again tomorrow at 7:10. LOL at rhymes.

(If there are errors, I’ve had a long day.)