August 14 – Cardiologist
Overall, I was feeling better than I had in a long time, but I was still short of breath and could not be active at all. If my heart rate went above 120bpm, I started to feel terrible and it took a while to get back to “normal” which was still not normal.
My Cardiologist started me on a Zio Heart Monitor for a week. During this time, I also monitored my blood pressure. I was working a festival in Nashville and again very thankful to Chris, my supervisor on this event. He was so understanding of my unknown health condition and allowed me to change my role, to work more on the bus as opposed to all over the site. One of the days I slowly walked over to our second stage and due to the heat, I could barely make it back to the bus. My dear friend Ali helped me walk back and after a few minutes, I realized I could not stay on-site. I ended up heading home and just listening to my walkie-talkie from my bed as I cooled down and slowed my heart rate.
The Zio data came back and my heart rhythm was normal, but had spikes in my heart rate. My blood pressure averages were high, so she started me on Valsartan, a blood pressure medicine. I had stopped taking Prednisone during this time, so that the readings would be accurate (steroids like Prednisone can increase your blood pressure and heart rate). After monitoring my blood pressure for another five days, it was till high, so she started me on an additional blood pressure medicine.
Three days off Prednisone and I felt like I had another sinus infection, ear infection, I was coughing up gunk from my chest and from the back of throat. I had more migraines and a higher heart rate.
September 3
Cardiac MRI – Results came back normal. This confirmed that my heart was not the issue and the abnormal reading in Oregon was a fluke, so I was referred to Rheumatology.
Rheumatology: the study of rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments.
September 11 – Rheumatologist
In between tests, Prednisone had given me some relief, but once I stopped taking it, I immediately started feeling worse. My shortness of breath got worse, I had chest tightness and fatigue, but could not sleep due to trouble breathing and my lymph nodes started swelling in my neck. I saw a Rheumatologist and he did a great job of listening and genuinely thinking of every test to run to try and help me. He ran more bloodwork and the results showed that my WBC / CRP / #Neut / #Lymphs were High, my RBC / HGB / HCT / Ferritin were low and I was positive for one copy of the S Allele (MS) – A-1 Antitrypsin Mutation, which is a genetic mutation showing that I am pre-disposed to develop emphysema later in life. Pretty crazy that tests can suggest things like that. He tested for all kinds of auto-immune diseases and they all came back negative. This was not a rheumatological issue.
My Saint Thomas Medical Partners Team: Pulmonology, Cardiology and Rheumatology, collaborated and decided I just had a stiff heart causing high blood pressure. This did not account for most of my symptoms and did not make sense to me, since the high blood pressure only started after I was sick and was clearly just another symptom. I did not accept this as the answer and with the encouragement of Jim, I continued searching for the root cause of my issues.
September 22
This was the first day of a tour that I have worked for three years. On this event, I am the advance person and in years past, I would travel alone, driving the tour route myself, setting up the event sites the day before the whole tour arrives.
This year, due to my un-diagnosable health condition, Dennis encouraged me to add a partner in crime for my journey and had Mandi travel with me. I am so thankful to have Mandi with me on this journey! She helped me drive and did most of the physical labor on-site, since it was hot and anything I did caused my heart rate to skyrocket. She also kept me smiling and made sure to check on me multiple times throughout each day to make sure I was wearing sunscreen, drinking water and keeping my heart rate low. I now call her, Momma Mandi!
October 7
I had a follow up appointment with the Rheumatologist and he recommended that I go to the Mayo Clinic in Minnesota. At this point, I had seen over 10 doctors since January and had been told it was allergies, it was anxiety and I had a stiff heart. Despite all these professionals pushing my concerns aside, I was determined to find an answer that fit my symptoms. I immediately started the process of getting an appointment at the Mayo Clinic. I was able to get on the two-month waiting list and attempted to get it approved by insurance.
October 8
Throughout the previous months of chest pain, I started developing pain in my left breast and noticed a lump near my armpit. I went ahead and saw my gynecologist and she confirmed that there was a lump in my left breast and scheduled me for an ultrasound and mammogram. The results came back inconclusive and said I had focal asymmetry. She suggested I get re-checked in 6 months. Another day, another dead end.
October 10
One of the symptoms that I have had since February were Migraines. They started by happening one or two times a month and continued to increase until I was having one every few days. This day, I had a migraine for the sixth day straight. I tried ice packs, heating pads, extra water, Excedrin Migraine and my prescription migraine medicine, but nothing worked. I had a huge opportunity the following day, my first job as a Script Supervisor for a televised special. I was given the opportunity to work in the TV truck for Dolly Parton’s 50th Opry Anniversary Special and I could not miss that. The show must go on, right?
The night before filming I went to dinner to meet the Director and crew for the special. I tried to put on a happy face, despite my head pounding. After dinner my migraine was so bad and my blood pressure was so high that again, I found myself in the ER. I told them of my issues and that I just needed help with my migraine, not with everything else. They saw that my CRP and WBC was high, but I asked them to ignore that and just treat my migraine, so I could get to work. Jim stayed with me in the hospital until 5 AM, while I got fluids and what they called a migraine cocktail. I went home and napped for an hour and then got to work at 7 AM at the Opry. My headache went away and I powered through the two-day shoot. After this experience, I was referred to a Neurologist.
Neurology: the branch of medicine or biology that deals with the anatomy, functions, and organic disorders of nerves and the nervous system.
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