Post #9 – My Greatest Journey (Chapter 8)

Disclaimer – The following post is not intended to diagnose, treat, or cure any disease or sickness. Please use caution if any parts apply to your specific situation and contact a health care professional for further advice. 

Thanks for joining the blog for chapter 8! Been getting lots of great feedback and people reaching out with questions! Please continue to follow and share 😊

Part 1 –

My first appointment at the Mayo Clinic was in the morning (Tuesday) so my Mom and I got up nice and early to make sure we got there on time. I was excited, nervous, and to be honest quite a bit scared. I didn’t really know what to expect, but I had this idea in my head that Mayo Clinic was the “cure all” for any disease or illness. Our hotel was about 10 min away from the clinic so it did not take long to arrive. As we pulled up, it was like arriving at a mythical place. The building was majestic and the atmosphere was inspirational (can you sense my approval?).

Let me give a brief overview of the Mayo Clinic and their logistics (Arizona location only, as this is the center I went to). They are a well-oiled machine that has perfected the process of the healthcare system. The clinic itself is only one building, but it has five floors with around four branches of medical care on each one. What this means is that you don’t even have to leave the clinic to see every specialist on the list. They also have a phone app that shows all of your scheduled appointments, procedures, testing, and results. You can communicate with the medical staff directly and keep all of your records in one central location. Rachel was also able to log in and follow along from back home. One of the most incredible systems I hope to never have to use again.

My first appointment was nothing short of amazing. It lasted almost two hours. The doctor that was assigned to my case was kind, caring, and seemed incredibly knowledgeable. He listened to every single one of my symptoms and ordered tests, appointments with specialists, and follow up plans for each of them. We found out REAL quick that this was going to be a much longer than a one week visit. He agreed with our suspicion that I had POTS, so he scheduled a round of autonomic testing to hopefully get me a formal diagnosis. Along with a boat load of further CT scans and MRIs (to check for further structural issues dealing with my stomach pain and head pressure), I was also given appointments with neurology, cardiology, ENT, audio/hearing, GI, and psychology (I was required to take a mental health exam to check my depression levels). After my visit had finally concluded, we sat out in the lobby and started planning out the next steps. My Mayo Clinic App instantly updated with all my testing and appointments for the upcoming days. It was then that I saw I had appointments and tests every day for the next TWO weeks. My work was again super awesome to me and told me it was no problem to take another week off (unpaid of course). This also meant my dad was going to need to fly down the following week and we are also going to need to buy another week of hotel stays, food, etc.

I could write an entire book on how my two weeks at the Mayo Clinic went, but instead I am going to summarize the outcomes for simplicity 😊.

Autonomic Testing – This was the most important testing I had done. We finally had formal proof that I had POTS. They strap you to a platform and tilt you at different angles and measure your heart rate. My rates were textbook POTS. They also test your breathing, blood pressure, and nerve responses using electric shocks. It sounds awful and IT IS. I never want to have this testing done again. But I had the proof I needed that something was wrong.

CT Scans (Head and Stomach) – My head CT scan came back normal. My stomach CT scan came back “normal”. I use quotations because this stomach CT scan showed an abnormality that ends up leading to me having a surgery for Median Arcuate Ligament Syndrome (MALS). More on this later. During my visit to Mayo this abnormality was dismissed as insignificant.

MRIs (Head) – Normal

Chest X-Ray – Normal

Blood Tests – *This was actually scary. I had to fill 18 vials with blood*. Everything came back normal. Negative for Lyme disease, Diabetes, HIV, you name it they tested for it. Not sure if I mentioned this, but I am HLA-B27 positive. In layman’s terms, this just means I have a marker on my blood that puts me at higher risk for autoimmune diseases. Overall still low odds, but important to remember because they currently believe my POTS is probably autoimmune related. It is hereditary so that means at least one of my parents have it. And at least one of my grandparents had it. Etc.

Waste Samples – Normal. No further detail ha ha.

Gastric Emptying Study – This was an interesting test that showed some good information into what was going on in my body. A gastric emptying study determined how quickly food is being processed through your digestive system. With autonomic conditions your digestive track can be affected. We discovered that my digestive track is working much quicker than normal, so food is being cranked through my body. I forgot to mention this symptom, but I was also having SEVERE diarrhea. Sorry for the TMI. So this was a really good indicator that I was having autonomic issues (aka POTS).

Sleep tests – I was sleeping normal, but my heart rate was spiking at random times throughout the night. As I know now, the autonomic issues that come with POTS can also cause random heart rate spikes even when sitting/resting. Stress is magnified because my “fight or flight” responses are not being controlled. I probably have intense dreams where I am saving the world or something.

Breathing Tests – I had testing done to measure the strength of my lungs (as I was having troubles breathing). These tests were not able to be completed because of my severe stomach pain when breathing. Kind of scary, but they assured me that nothing was structurally wrong so it had to be nerve pain. Either way it was not good for my anxiety. This failed test was another clue that lead to my MALS surgery that I will talk about later.

Mental Health Eval – Normal. Minor depression was noted. But normal given my situation.

Lumbar Puncture – This was to finally put an end to the CSF leak witch hunt. Normal CSF pressure.

Audio/Hearing – I had my hearing tested because I was having some balance issues (due to POTS). Ears kind of control your balance. This came back normal. This sucked though because they shoot air into your ears to make you dizzy. This shows your ears are working normal. I ended up puking for like two hours.

Cardiology – Normal. Heart was in tip top shape.

Neurology – I was put on standby for this appointment because they were booked out for months, but they were able to squeeze me in due to a cancelation. After looking at my autonomic testing results, they concluded that I officially had POTS! I finally had a diagnosis.

 

Ultimately after two weeks at the Mayo Clinic I had accomplished a great amount and finally had my POTS diagnosis. As the trip was reaching its conclusion, I had learned some important details about my condition.

 

  1. I was not going to die.
  2. I had POTS. We still didn’t know why, but my condition at least had a name.
  3. Mayo put me on a better beta blocker for my heart rate.
  4. I was supposed to increase my salt intake to 8000 mg a day. (YES THAT MUCH). This was to increase my blood pressure. Kind of a win in my book actually… I am one of the very few people that actually need to eat as much salt as possible.
  5. Mayo gave me two packets of information on how to deal with POTS (home care, lifestyle changes, etc).
  6. After my diagnosis, I joined a Facebook support group for POTS and discovered there was an expert in the field that worked at the University of Washington. He was working with the Mayo Clinic to create treatment plans for patients. This meant I wouldn’t have to travel back to Arizona for follow up.
  7. I was still had severe stomach pain, head pressure, and all of my POTS symptoms.

My dad and I left Arizona and headed back to good ole Washington to try and wrap our brains around what all had just happened and what we were going to do next. I was excited to get back home and see Rachel.

 

 

To be continued…..

 

 

Part 2 – Praying before Appetizers?

I’ve been rather swamped this week, so instead of any stories here is a video Rachel shared with me. Classic.

 

 

https://youtu.be/2VK4uyxeMXk

 

 

Disclaimer- I was not paid or given any product/services for free. This review was made purely from my own will.

 

Thanks for reading! Be back next week as the POTS saga continues…..

Please contact me for any specific topics, questions you want answered, or reviews you want!

Jarod Gunning – Dude with POTS.

 

 

 

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