Mayo Clinic - Day 2

Exhausted! That's how I feel free my biggest day of testing. On paper it didn't look all that terrible but my body is telling me otherwise. I'm glad it's over and now I can enjoy the rest of my week!

Today started with lots of bloodwork. Mayo Clinic is fantastically efficient so it was all done at once with only one poke. Too bad that poke came from a needle the equivalent of a needle used for cow vaccines. Those at home know what I'm talking about. For those unfamiliar with bovine vaccinations, the needles are massive! The nurse was great and got me with one poke and all was well. She took about six vials of blood. Within the hour, I was able to review most of the results on my Mayo Patient app. They checked for a lot of things and I'll have a better understanding of it all after I follow-up with Dr. G. on Friday. What I can tell is that I don't have chronic kidney failure (hooray), I'm anemic (which I already knew), and I have low Vitamin B12 levels (which I've read is fairly common in POTSies).

Next, was the catecholamine test. The nurse started the IV with the above mentioned ginormous needle and then left me in a dark room to rest for thirty minutes. She then snuck into the room, drew some blood for the IV, and took a blood pressure and pulse reading. Then, the obnoxious fluorescent lights come back on and I had to stand for ten minutes (and I didn't pass out!), after which she repeated the blood draw, blood pressure, and pulse. This test measures your body's chemical reaction to standing. It determines if you have Hyperadrenergic POTS. I've always had symptoms of Hyper POTS but always passed this test so I guess I'm just a breed of my own! I don't yet know the results of today's test.

Then, we moved on to the Autonomic Reflex Screening. Ugh! This is the one that really wiped me out! It started with the sweat test. Four cells are placed on your skin (arm, leg, and foot). A chemical solution is then distributed through those cells onto your skin. The nurse then turned the machine on which activated the cells. This part got a little uncomfortable. It feels a little like a bee sting that lasts for five minutes. It's not terrible, but not the most comfortable either. Next was the breathing exercises. These always make me symptomatic. It started with deep breathing. A light indicator lets you know when to breath in and out. I took eight deep breaths and then rested before repeating the test. My heart rate went over 100 beats per minute with this test even though I was lying down. So crazy! Next, I had to blow in a straw until a pressure monitor read 40. I had to continue blowing and keep the pressure at 40 for 15 seconds. Nearly impossible for me! My heart rate went through the roof and I was light headed and miserable. This explains why I can't blow up balloons! :-) We finished up the screening with the lovely Tilt Table Test. I loath the TTT! They strapped me to the table and slowly raised it to a near standing position. I almost fainted instantly. I was not able to see my heart rate readings but the nurse said it spiked really high. I was able to push through and had waves of tachycardia. It never went away but got worse and then a little better and then worse, etc. I made it almost to the end of the ten minutes before asking her to lie me down!

And then I got to eat! Finally! A big yummy cheeseburger! :-) Now I'm feeling extremely fatigued and weak and will be spending the rest of the day relaxing. Tomorrow shouldn't be as bad, so we shall see! Another day, another adventure!

Amy

Mayo Clinic -Day 1

Well, I had my consultation with Dr. Goodman this morning. As always, he was terrific. If you have POTS, Dr. G. really is the best of the best. He was not shocked at all to hear of my symptoms. He said that its common for us POTSies to have extreme symptoms after surgery. They aren't sure of the mechanisms but something about the surgery seems to fire up our autoimmune systems. Unfortunately, this doesn't always show up in blood work.

He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.

Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!

He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!

Amy