It’s finally time to go to Mayo!
Its week one of Mayo Clinic and I am going to share what I did along the way. I found it helpful to read a few blogs and talk with friends beforehand, so I know what to expect. But honestly I was exhausted from getting all my records together, packing for the week ahead and just wanted to get it over with.
I couldn’t have asked for more perfect timing to get this first cancellation appointment. My health was definitely not improving and for peace of mind, we all wanted answers and hope of a treatment. Please read “Time to prepare for Mayo Clinic” to catch up!
My buddy
My mom happily decided that she will be my buddy for my Mayo clinic adventure. There is no possible way I could have survived these weeks without her. She helped me organize, unpacked and situate the air-bnb room, drove me to my appointments and the grocery store, dedicated the time she spent in the waiting rooms praying or going to the various chapels and churches, gave the best post appointment/post procedure hugs, and was a patient sounding board and gave helpful feedback when I felt stuck in a situation.
My dad even drove down for a day and it was probably one of the hardest days I had, so he got to push me around in a wheelchair for that day. I guess (even in all the discomfort I was in) riding in a wheelchair was fun! My family is the absolute best and there is no way I can be doing this without them.
Sunday April 23:
On Sundays, I go to mass. Only in the case of illness is it ok to miss Mass in the Catholic church. Yes this is a “rule” I follow, but its so much more to me. I love my Catholic faith and honestly Mass days help me get through the week with peace and confidence that God is the one who ultimately controls everything.
On this particular Sunday, I was basically bed bound. I felt like my body was struggling to keep equilibrium which happens with autonomic neuropathy. Even just 2 hours of packing the day before, exhausted me to the point where I didn’t even have the strength to go to the kitchen to make breakfast or lunch. I had my bags in the hallway and my mom helped carry them to the car. We left at about 4:00 PM after saying our goodbyes to my brother and dad.
As we got closer to Rochester, I decided I wanted to see if we would still make it for the healing mass that was taking place at one of the Catholic churches in the area. It just so happens that there was a Croatian priest with the gift of healing who was offering blessings to those in need. We swiftly made it in to the church and got the healing blessing, I had so hoped for. This was the perfect start to the week. The blessing gave me something I had started to lack in, Hope.
After this we decided to stop by the local natural coop before they closed for the night. After not eating all day, I knew if I was going to make it up to the air bob, I needed something to eat. Eating is tricky for my body. It always seems like food does not move very fast past my stomach and leaves me either in pain or it simply just comes back up (sorry in advance for all the details, but this is a Mayo clinic post!). But I at least wanted to try and we picked up a few random things that sounded good to me like coconut ice-cream and salmon (I guess I was craving healthy fats!).
We got to the air bnb and it was a nice simple condo on the 5th floor. It was basically 1 block from Mayo clinic so we felt it was perfect for our week ahead. My mom helped change the sheets on the bed (this is something I talked about in my post “Essentials for Healthy Travel”). Its just a way to ensure we get a good night sleep without worrying about sleeping on sheets washed in chemical detergents.
Monday April 24:
I was quite nervous actually for day 1. I had my big folder of medical files that we carefully requested and printed along with all my scans (MRI’s, CT’s, x-rays, ultrasounds) that I had done over the last 10 years. I was way to nervous to eat a good breakfast so we decided to pack up our cooler and headed out the door. I had enough strength to walk to the clinic and the fresh air actually felt quite good!
When we got to the Mayo building, it felt surreal because of how hopeful this was to finally finding what is wrong. Of course we don’t know what God has in store for me, but something is just very right about this visit. I have gone through so much these past 10 years from being house bound, to being diagnosed with autonomic neuropathy, doing neurological therapy, getting well enough to move to Colorado and start my doula training. But there were still pieces to the puzzle that were missing (otherwise I would not be going to the Mayo clinic).
Ask we entered the building, I knew I was going to like it here. There was a statue of a nun with Dr. Mayo outside the courtyard. Mayo was actually started by Catholic nuns! My mom decided to go to morning mass and learn little about Mayo clinic while I went to my first appointment. I decided that doctors would take me more seriously if I went in alone. Throught the years, if I brought someone in with me such as an older siblings, or parent, then the doctor directed the conversation toward them. This is ok to some extent, but I felt like I wanted to be heard clearly since I was the patient.
We rode the elevator to floor 17 and went to the Gonda side of the building (Internal medicine department). As we waited in the lobby, I downloaded the Mayo clinic app on both of our phones so my mom could always see my appointment schedule and all my lab results and comprehensive doctors notes and records (they take amazing transcribed notes after each visit!). Everyone was just so nice here at the Mayo clinic, it was hard not to be happy.
As I was called into my appointment, my mom headed down the hallway subway to go to mass. Yes there is a subway tunnel that connects the Mayo building to the Catholic church. How cool is that?!
Internal Medicine appointment #1
The nurse took my vitals, gave me several welcome packets and took my CD scans to copy them into their system. Mayo Clinic prefers to look at all the patients medical records by hand (in their printed off format) at each appointment. I actually like this because I get to sit back and watch the doctors process and soak in all my medical info. Its just cool to see their brains working and thinking. Dr. Nina Schwenk walked in and greeted me with a kind smile. She sat down and first off asked how I was doing. I was very honest and explained I was tired, nervous and ready for answers. I handed her my big packet and she read through each page, asked questions along the way and took notes at the same time. This turned out to be an hour of discussing my medical history and then we went on to the physical evaluation. She noticed right away my lack of circulation (aka purple feet and hands). She was careful not to over stimulate me because of how I explained that going to from laying down to standing can make me dizzy. She checked all that an internal medicine doctor checks, took notes of my odd looking sinuses, purple discoloration, comments on seeing stars, lack of digestive sounds and a heart beat over 100 bpm.
After this exam she, had me wait little bit as she thought about what needs to be done over the next few week. Obviously she thought I should see a neurologist, as well as infectious disease doctor, endocrinologist, gastroenterologist, and the ENT doctor. She ordered a EMG, ECG, urine tests, blood tests, a new CT scan, and an autonomic test. She did say “this was just the beginning” and I will have more doctors and appointments be added along the way. Her last comment was that it sounds to her like POTS (Postural orthostatic tachycardia syndrome) but I definitely have other things going on and my case is complex. “Not to worry though” because I won’t leave until they figure this out. She reassured me this is not in my head and I certainly have for real conditions that need attention.
Mayo has an incredible system and basically the patients schedule can change from hour to hour depending on what the doctor can find. The way Mayo clinic works is usually having the patient start with Internal Medicine. Then from there, you will be sent to the specialists needed to appropriately test, diagnose and treat the patient.
Time to meet mom
I was probably in that appointment for over 2 hours and decided to text my mom that “I’m done!” She rushed upstairs to greet me (she was sitting in the chapel on the Subway floor). I got a great big hug squeeze from her and she eagerly asked how it went! My eyes bugged out and realized I had to reiterate everything, but I decided to fill in her because I was excited to share that I do indeed have a lot of things wrong. This may seem like bad news to some, but to me this was the best news ever. Finally I will get answers and this is the best place in the country for people with autonomic conditions because Mayo clinic specializes in dysautonomia and actually creates the testing and research needed for these conditions.
Of course all this medical stuff sparked the the inner scientist in her and she was able to share my excitement as I went through the medical evaluations and Dr. Swanks comments (my mom used to be a microbiologist). I had to sit down and speak slowly which means catching may breath in-between sentences. For people with autonomic neuropathy talking can sometimes be a challenge. My heart rate can jump from 8 bpm to 115 ppm by just saying a few sentences. Its due to my nervous system not being able to self regulate itself like a normal body. I’m still trying to figure out how to get all all I want to say without seeing starts or feeling like I’m having a heart attack by the end of a conversation. But m closest family members and friends know this about me and understand if I blank out mid-scentene (its because I actually am suffering from talking!).
After waiting for 5-10 min as the nurse assistant contacted the specialist departments and put my orders and labs in to the system, she called us over to the side desk. She went over my “new schedule” which consisted on mostly back to back appointment Monday-Friday and well as going into the next week.
I looked at my mom to see her reaction and she said that she met a guy in the elevator while I was in my appointment who came to Mayo expecting a 2 week long visit (this is a common period of time spent here), but had been there for 3 months. She said that after this conversation with this man, she had an inkling I was going to be coming back and spending at least a few months total her over the next year. We live close enough to drive to Mayo in a few hours, but to be realistic we decided to stay close by for a week at a time because appointments start early and end late.
Time to start the testing!
They fit me in for the ECG test Electrocardiography test in 30 min, so we headed down to the Subway level office where I was to get the test done. I was early but they took me as soon as I checked in. I was hooked up to some electrodes to measure my heart rhythm and rate. Yes my heart rate ran on the higher side, but at least my heart rhythm was healthy and good.
It was around 3:00 and we were both very hungry by this time! I was pretty nauseous from all the stimulation and we decided to look in the cafeteria to see if anything looked appetizing that I could keep down. The cafeteria was not your typical hospital cafeteria but more of a giant young with a tea/coffee shop and a lot of healthy options. I decided an orange sounded good and my mom got some soup and juice. I ended up being able to eat more once we got back to the air bnb condo, after I could rest and lay down. Laying down flat on my back for 15-60 min can do wonders for my body. This is a common scenario for people with autonomic neuropathy since their blood supply and pressure don’t regulate properly. I have learned tools in my lifetime to cope with symptoms like this so I am semi-functionable.
So that wraps up day 1! By this time, the report in the online Mayo clinic portal from Dr. Swank was all written out so we could both read it and review all her thoughts and notes from my appointment. We opened up the app which had outlined all my appointments, their times, the floor/building, and any directions and educational info I will need to know beforehand. It was so well organized that we did not have to juggle doctors or appointments, but instead focus on resting and getting through these days. Day 1 was hopeful and we both ended the day catching up the family and thanking God for leading me back to Minnesota so I can get the help I need to feel better.
Have you considered electrical/EMF sensitivity?
You sound like me at one time. It was while I was pregnant. But I’ve experienced POTS symptoms my whole life. It just got really severe during that time. I knew based on my research that it had to be mitochondria dysfunction and I knew that biochemically something was severely off. Taking any kind of vitamin made it worse, except Potassium. I lived on Potassium because it’s the only thing that kept my heart rate from going out of control, and keep me from passing out. They don’t catch Potassium deficiency because 85% of Potassium belongs in the RBC’s but they only test serum. Your mitochondria is the cells gate keeper of Potassium and other electrolytes. If it’s not functioning correctly, all your electrolytes will simply be dumped through your urine. Hense the vascular dysfunction. I was taking upwards of 4000mg of Potassium a day just to function. The RDA is 99mg! So my midwives where worried and asked me to go down on my Potassium. I tried to and the following day I ended up in the ER. I didn’t know what to do because I couldn’t take anything without it making me crash. I was at the point of being narcoleptic and just to get out of bed felt impossible. Potassium kept me alive. So after more research, I concluded that liver was the perfect mitochondrial food. It had the perfect balance of nutrients to help mitochondria function. I started taking it and my need for Potassium was cut in half. I still wasn’t doing as good as I needed to be, and I knew that something had to be severely off. So I did an organic acids test through Gail Clayton and she found a severe deficiency in pantothenic acid and riboflavin. Getting those two nutrients up alone was life changing. I starting tolerating vitamins again and had more energy than I ever had, even before my pregnancy. I quit having to take Potassium too. Dysautonomia diagnosis is simply a diagnosis. No one in that community actually truly knows what causes it or how to fix it. I do believe it’s primary cause is mitochondria dysfunction and the cause (nutritionally) for each person is unique. I don’t have any of those symptoms still other than the lack of energy and depression and anxiety that is always helped with nutritional balancing. But I want the healing, I’m tired of trying to do all the work. So I’m getting ready to do the dynamic neural retraining that has helped so many people I know. I was knocked out in a car accident as a child and do believe that is a contributing factor in my health challenges. I’m always praying for you girl!! It’s been at least 5 years that I’ve been following you! It’s high time we get better forever!
<3 Thanks! I love reading your comment and will definitely consider looking more deeply into nutritional things. Yes I too tried neural retraining and it was fascinating.