1. The Search for an Answer

February 17 – The Mayo Clinic

Jim and I flew to Minnesota!  I have never been so excited for a trip to a doctor’s office.  It had been 14 months of being sick and over 176 pages of test results. Of being told that my symptoms were in my head, it was just allergies, it was anxiety or one I got towards the end was, I was de-conditioned and I should work out more…  Being constantly dismissed was so depressing and there were so many times where I started to believe them.  Maybe it was in my head?  Maybe I was being dramatic?  Maybe I do need to work out?  I honestly do not know if I could have continued to fight this battle if it had not been for Jim.  He was so encouraging.  He was the first person to point out my breathing issues in the beginning.  It came on so slowly, I almost did not notice it.

The Mayo Clinic, for those that are unfamiliar, is a nonprofit organization committed to clinical practice, education, and research, providing expert, whole-person care to everyone who needs healing.  They have campuses in Minnesota, Arizona, and Florida.  I cannot speak highly enough about my experience with the Mayo Clinic.  Every person I encountered was so incredibly kind, caring, and thoughtful.  They all worked together to find answers to all my questions and never made me feel dismissed or rushed.

Jim and I spent 12 days in Minnesota on the search to figure out what was going on.  When I arrived, I met with a General Internist (Dr. Gail M. Boriel) and she was my quarterback for this experience.  She gave me a full physical, listened to all my concerns and documented all my symptoms and then began ordering tests.  Each specialist I saw after that added more tests and appointments, and so on and so forth.  Below is a list of the 25+ appointments I had while I was there.

Many Many Exam Rooms
  • General Internist Eval.
  • Chest CT
  • Chest X-Ray
  • Pulmonary Lab Testing
  • Electrocardiogram
  • Echocardiogram
  • Blood Work #1
  • Neuro MRI
  • Cardiologist Evaluation
  • Dermatology Evaluation
  • Pulmonary Evaluation
  • Abdomen CT
  • Hematology Evaluation
  • General Internist Eval. #2
  • Overnight Oximetry
  • Chest Ultrasound
  • Electromyogram
  • PET Scan
  • Neurology Evaluation
  • Cardiac MRI
  • Infectious Disease Eval.
  • Lumbar Puncture
  • Brain Vein MRI
  • Headache Specialist
  • Neurology Evaluation #2
  • ENT Evaluation
  • CT Biopsy Procedure
  • Electromyogram #2
  • Blood Work #2
Pulmonary Lab Testing

The experience in Minnesota felt like a roller coaster of emotions.  It felt like the past 14 months of appointments all crammed in to two weeks.  Mayo wanted to run all new tests, so they had the most accurate information and just like my appointments throughout 2019, it started to feel like I was in the twilight zone.  It started with the cardiologist saying it was not a heart problem.  Followed by the dermatologist, who removed a cyst that had grown on my arm, it was benign, so dermatology was not the issue.  The doctors agreed that my issue was not pneumonia and was glad I did not follow the recommended treatment plan from January.  Neurology said that I was mis-diagnosed with IIH, Intercranial Idiopathic Hypertension, and that I had migraines that were being triggered by something else.

Then the Pulmonologist said it was not a lung problem.  In my pulmonology evaluation, he mentioned that there was a mass on my thymus gland.  He said it was common for thymic hyperplasia’s to grow, would not be the cause of my symptoms, and not to worry about it.  This information was like a bomb went off.  There was a mass… in my chest… in the exact spot that I had pain… how could he say this was not an issue? 

My next evaluation was with Hematology / Oncology and they THANKFULLY wanted to dive deeper into the mass in my chest.  There were a few enlarged lymph nodes on the scan as well, so they are ordered a PET Scan to see if the mass was active.  Apparently, this mass was on my chest CT from JULY!  It had doubled in size by the time I got my second scan at the Mayo clinic.  My previous doctors that saw my July CT, at least 5 different doctors, all missed it.  I did the PET Scan and the mass lit up like a Christmas tree.  I had been asking multiple doctors since October for a PET Scan because this type of scan shows inflammation and my CRP was extremely high, telling us there was inflammation issues somewhere in the body.  The Tennessee doctors said insurance would not cover a PET Scan and that it was not necessary.  Thank goodness for the Mayo Clinic!

Since the mass was active and growing so fast, the hematology department wanted to get a biopsy of the mass.  I had that procedure on February 27th.  The results would take up to a week to come back, so Jim and I returned to Tennessee to anxiously wait for the results.