Mayo Clinic POTS Clinic experience

Mayo Clinic Day 1

Mayo Clinic Day 1

It is the end of my first day of testing. Although everyone I have encountered has been nice, professional, and helpful, I have to say — I CANNOT WAIT FOR BED!! It has been exhausting having a test or another every hour! That said, it is all worthwhile because it should help the doctors figure out what we need to do to get me better!

Jake is an excellent wheelchair driver (unlike my mother who is a little scary)! This is one of the first things we saw when we came into Mayo Clinic!
Gorgeous view out of the window — all of the buildings have gorgeous architecture.

My day started at 6:00 AM. I needed to get up, get ready, and be waiting for my blood work by 7AM. We got there to find a line longer than most Disney World lines, but luckily we moved through it in less than 10 minutes. People aren’t exaggerating about how fast and friendly all of the employees are here! The phlebotomist (or “sticker” as I like to call them) was awesome. He was making me nervous because he spent a couple of minutes feeling my veins. Usually in my experience this results in them blowing my vein, but to my relief, he got it on the first stick and I hardly felt it. I was surprised to be sent off with this ginormous container.

Goodness….

This ginormous container isn’t for the large amount of water I need to drink, or to put gas into in case I run out while driving. No, this entire container is for PEE! That’s right, it has a drink spout on the top. Enough said…

Sweat Test

Next, it was off to my sweat test. The purpose of this test is to see how my autonomic nervous system is working. If there are lesions on any nerves it will show them where they are, but it cannot tell them what type (QSART tomorrow will help with that). Here is a link on various types of autonomic function testing, including this one.

First, they cover you up with these pillow case like things, and cover you with a golden dust. From my research, I knew that they would cover my lady parts. I was quite happy to see it was cloth and not a giant sticker like I had seen elsewhere. Eek!

They are very adamant the golden sweat test dust gets nowhere near your nose or mouth.

The dust, I was told, would turn purple as I sweat. “How did they make me sweat?” you ask? Well, they stick you in a giant torture chamber with lights and some sort of tube that rapidly increases the humidity.  They have heat lamps at the top of the chamber, so they put me in these groovy sunglasses… They put thermometer sensors in my mouth and on my forhead, stomach, and leg.  By the time the guy was ready to put me in, I was freezing and almost looking forward to the sweaty chamber.

Me all ready to go in the sweat test machine!

There were windows on either side of the chamber, so it didn’t get claustrophobic, but the best part of the windows was Jake being able to sit outside them, wave, and show me pictures of Emma. They also had speakers on the inside of the chamber, so Jake plugged in his iPhone to the system and play me all our lovey songs (I know — it’s so cute). I was concerned I was not going to sweat. This would have been awful because they leave you in until all of the gold powder turns purple from sweat or your body reaches 100.4 degrees. Luckily, I began turning purple pretty quickly.

Jake took this picture through the window. I was having a pretty miserable time as you can see.

After about half an hour, I was all purple. I have never been so happy as when the guy pulled me out of there. The bed had a sweaty, purple outline where I had been. It was pretty funny!

This is the (nasty looking) bed covered in the golden powder, sweated on golden powder turned purple, and good old fashioned sweat.

I took a shower there, but I am still purple right now!!
Next came…

Echocardiogram

This was to obviously make sure my heart isn’t malfunctioning and doesn’t have a deformity.

Chest X-ray

This was to make sure the causes of my problems had nothing to do with lung issues. This didn’t really make sense to me but whatever. Their x-rays are so sensitive, my wet hair showed up on the test!

Electrocardiogram (EKG)

This, again, is pretty obvious. It was to make sure my heart is working properly.

Endocrine Test

This test was kind of strange. The purpose of it is to measure the levels of nor-epinephrine, epinephrine, and dopamine in a low stress situation versus standing. Here is me cheesing it up!

I was told I would need to lay in the room with the lights off and no noise for 30 minutes. My family had to leave the room. They had me lay on a table and put in an IV with no line. They had the IV in so they could take blood without having to stick me. Sticking me would increase my stress hormone levels and give an inaccurate read of my resting levels.

The nurse was so nice. She asked how the IV was and I told her it sort of burned but it wasn’t a big deal. She got me a heating pad!After she left, all I could think about was the annoying ticking clock. Anyone who knows me well, knows this noise drives me INSANE. I wanted to tell them if they were concerned about my stress hormones, they should get that stupid clock out of the room.

After 30 minutes a different nurse came and took my blood. He told me to walk around. I was a little confused on the instructions, so I was wandering around the room where they process blood. They were all looking at me just a little funny and asking if I was “okay”. Then, the nurse told me I could walk around anywhere (hint: the waiting room) for ten minutes. After ten minutes, I came back and they took more blood in order to see how my stress hormones respond to standing up. I am guessing they did not respond well since my body hates standing and it is what makes me most symptomatic. For more information on this test, see a post from Future Jackie here.

The nurse told me he sees a lot of thin, young women in for POTS. He says he rarely sees older women or males. I really hope someday they can figure out what causes this and why. In the meantime, I am more than happy for anything that makes me feel even a little bit better!

I am off to get all rested up for day 2 of tests. Thanks for reading! Use the comments button at the top of this post if you have any thoughts you’d like to share.

— Jackie

17 thoughts on “Mayo Clinic Day 1

  1. Way to go my dear!! You rocked day 1 like a boss! Keep smiling and keep doing an awesome job on your journal. Prayers are being sent for you over and over! Give Jake my love too 🙂

    Like

  2. Been thinking of you all day, so glad you can keep us all informed of your days. You are in a great place and pray they can give you some answers .Look forward to hear from you tomorrow. Love you and saying special prayers for my very special neice. aunt lynn

    Like

  3. Hang in there Jackie! It’ll be a long couple of weeks, but Mayo is one of the best places for you to be! See if you can steal some of the purple dust and we’ll use it for your next photo shoot!!

    Very cool blog by the way… I’m looking forward to reading it every day! Keep smiling!!

    Like

  4. Aw, Jackie!!!!!! If only young people get this, could you possibly just outgrow it eventually? I don’t know much about it, but hope you’re feeling better soon! Mayo is supposed to be very good, so hopefully they will figure it all out! I always thought your ma was a good driver….! lol!

    Like

  5. Hoping and praying that you get some well-deserved answers finally! So glad that you are up there. I love the blog! You are the sweetest, bravest girl I know. Love you!

    Like

  6. Been wondering how your doing. Wil be waiting to hear more as your day goes on. Pooh and I are thinking about you. You will be in my prayers. Love you!

    Like

  7. Awesome Blog! I’ll have to check it out daily! It’ll be a rough week for your I’m sure, but Mayo Clinic will get to the bottom of everything & hopefully have a great solution!!! I love you!! Aunt Cathy

    Like

  8. Jackie, Please just know that we love you and are thinking of you and anxious to follow your blog and share in this journey with you in that way. We are praying for answers and solutions and please let us know if there is anything we can do for you or your family. Hang in there. You’re so worth it!!!!

    Like

  9. Jackie, this is such a good way to keep in touch with everyone. We are anxiously waiting to hear what all these tests will show. Just want you to get better & get that wedding planned. Love you, Sweetie!! Aunt Diane

    Like

  10. Jackie, I hope through all of this, you get the answers you’re looking for. It looks like you’re in good hands, and good company (Jake). Praying for you and your recovery. Be calm and patient, and you’ll get through this week just fine. Best of luck!

    Like

  11. Hi Jackie, Hope you are doing okay getting through all this testing!! It will be so worth all the aggravation to finally get some answers hopefully!!

    Like

  12. My poor baby! I’m glad the “stickers” aren’t treating you like a pincushion! I wish I could be there with you. I’m thinking about you every other minute and I have high hopes that they will figure something out. Love you!!!

    Like

  13. Hang in there Sweetie, you are in my prayers and I am so impressed with your blog. It’s so much easier being here when we know what’s going on up there. Grandma Mary is with me for a few days & has been worried about you so I will let here read this tomorrow. Stay strong!! Loves & hugs.

    Like

Your turn!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s