Mayo Clinic POTS Clinic experience

Mayo Clinic Day 2

Thank you everyone for reading my blog and the all of your kind thoughts! I am very encouraged by all of it and it definitely lifted my spirits! So today was rough. I am soooo so tired from yesterday that I have taken 2 naps… Luckily, I have awesome parents. My mom has been cooking for me in our hotel kitchenette and my dad drops me off at the door and walks half a mile back and forth between the hotel and Mayo Clinic.

Autonomic Nervous System Test

This testing was pretty much was awful. First, they put electrodes type things all over my body. Once they turned them on, they burned. It kind of felt like it does when an IV needle is going in — ouch! I was told they were making me sweat underneath where they were stuck on and it was measuring the sweat. It wasn’t very pleasant, but only lasted for 5 minutes — I can do anything for 5 minutes!

This test was called the QSART. What was being tested was my autonomic, specifically sympathetic, nerve function. The QSART can identify small fiber neuropathy. If my thermoregulatory sweat test showed lesions, it would let us know if they are pre or postganglionic. Used alone, it will only detect postganclionic lesions. If you missed it in my Mayo Clinic Day 1 Post, here is a medical journal article on types of autonomic function testing.

Next, they put a little blood pressure cuff on my finger and had me blow into a tube to see how it impacted my blood pressure. They had me do this lying down and at a 30 degree angle. It was actually kind of hard because I needed to blow really hard and hold it at that level for 15 seconds. I could feel my heart pounding! This is called the valsalva maneuver. It checks for my hearts ability to compensate for changes in blood flow to the heart — the link explains it way better than I ever could.

Then came the worst part. It made me miss the little needle like electrodes. The put the bed at an 85 degree angle to the ground. Standing makes me feel the worst of anything that could be done to me. When I stand for long periods of time without compression stockings on, it feels like someone gave me a sleeping pill, is filling my legs with water (but it is actually blood), and like I just got off the tilt-a-whirl. They made me stand for 10 minutes, taking my blood pressure and pulse every so often. My pulse went from 76 to 112. This isn’t normal!! Lying down, most healthy people have a pulse of around 60, and standing it doesn’t go above 75 in a healthy person.

The man and woman running the test were pretty funny because they kept applauding me. It was encouraging but made me feel kind of silly. “Yay! You’re doing such a good job standing!”

Getting Holter Monitor On

A holter monitor monitors your heart rhythm and rate. They put a bunch of electrodes all over your chest that then go into a little box. You have to wear it 24 hours. I don’t really mind holter monitors, but I am not happy about a blood pressure cuff they put on me! It had another little box and squeezes my arm every 10 minutes! It keeps not getting my blood pressure, and going off more like every 5 minutes. I am going to have a nervous breakdown!!!!

After this I came back to the hotel and slept for an hour. Having this thing on makes me want to just sleep so I am not aware of how annoying it is.

POTS Nurse Practitioner Consult

I met with a nurse practitioner who is an expert on POTS. She asked a lot of questions and didn’t once look at me like I was a weirdo. There isn’t much to report about this other than she was really nice and understanding!

After this I was supposed to go to an educational consult, but I was way to sick for it. I came back to the hotel and slept another 2 hours. I only sleep in 10 minutes increments because of the stupid blood pressure cuff.

So here I am with all of my heart stuff stuck all over me and my messy bed head!

The holter monitor and blood pressure colds. They gave me these attractive blue bags to hang around my neck for the electronic parts of the unit.

I am going to go rest more. Sorry if it isn’t that exciting to day but I am DEAD! Thanks for reading! Use the comments button at the top to leave me any thoughts 🙂

— Jackie

10 thoughts on “Mayo Clinic Day 2

  1. Jackie- Sure been thinking about you today. Let Laura know you were at Mayo and she sends her thoughts to you. You are so brave and I think it is amazing that you are sharing this journey through your blog. Love ya! Kristi

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  2. How awesome, after all that, to see such a large and amazing smile!! The way that you document your journey is so enlightening and educational. Thank you for sharing with us as we keep you in our thoughts and pray for you. Stay strong!! You’re doing awesome!!
    Mike

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  3. Wow Jackie, you are a trooper for sure!! Sounds like they are putting you through torture. Good job at getting through it girl

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  4. Jackie, Hang in there! Thanks for keeping us informed thru your blog. It will be all worth it in the end. Should be able to see whats going on and have answer after everything is all over with. Love you Pooh and Mary.

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  5. You’re doing great!! Just think, after tomorrow you’ll be more than halfway done with this week of testing!! You can do it!

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  6. YAY!!! You finally found an expert on POTS!!! You are strong & will get thru this week!!! I believe in you!! Love you lots!!!

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  7. Keep Smiling Jackie!!!!!
    It is so great that you are documenting this process…I think it will really help sooooo many people. (Plus it’s nice for all of us friends and family to know what’s going on) I agree with Aunt Cathy… YAY an Expert on POTS!!! that’s exciting news.
    It really sucks that you are going through this. I’m with the other’s though… rooting you on!!!
    You are awesome! You always have been and you always will be!
    Love,
    Jaci

    (ps. when you are feeling better, before the wedding… we should have a girls slumber party, Staci and I can even whip out our awesome ACI Salon.)

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  8. Hi Jackie…I am so proud of you for being so brave while they do all these awful things to you, but just remember it is going to help you. You are in our thoughts and prayers. I know you can do it. Love you bunches!!!!!!!

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