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Kate Update: January 5, Mayo Clinic, Day One

January 5, 2010

Today was my first day at Mayo. It went well. I have an unusual doctor, with a “bedside” manner unlike anything I have experienced previously. Despite his odd behavior, my doctor seems to really know his stuff. He has me on a new five-part regimen which consists of drinking an inordinate amount of water (there’s a funny story here), consuming twice to three times the daily recommended amount of salt, a few specific types of exercise, and two new medications.

Tomorrow morning I will begin the first medication, Midodrine, which they want to raise my blood pressure. After four days on of this, I will begin a beta blocker to lower my heart rate (and my blood pressure, as I understand it). Dr. General Hospital says these medicines will make me “feel different in a week,” and when that happens I should call him so we can move onto step two.

He is waiting to look into the cyst until they see how many symptoms respond to these medications. If I don’t “feel different in a week or so” they will switch me to a neurologist, since the symptoms would most likely be more cyst-provoked than heart-provoked. (I really do not want this to happen.)  As to just what “feel different” means, I’m not sure. But he says I will know, because I likely haven’t felt that way… ever. Sounds wonderful. I am looking forward to it.

At this point, I must add to my personal notes.  I cannot remember relating the story of my cyst to my readers.  Long story short, I have had ongoing dizziness, depth perception issues, EXTREME migraines, tinnitus, loss of extremity control, and more.  Though they attribute most of these symptoms to my Postural Orthostatic Tachycardia Syndrome, they feared the incapacitating headaches were caused by something else.  They were right.  After an MRI they found a cyst in my brain.  Though these cysts are common, the size of mine is quite uncommon.

Now for the amusing and/or noteworthy highlights from yesterday…

In all seriousness, Mayo is an impressive, and humbling place. Everyone from the shuttle driver to the bathroom attendant were exceptionally kind and jovial. The buildings are lovely, the finishes are consistent with a high-end hotel. The exam rooms are setup like nice offices for the doctors… nice carpet, nice desks, and enormous windows. They have they typical medical contraptions in them, but they make you feel comfortable and they make the doctors seem even more professional. The view from the exam rooms is definitely not your everyday hospital view.

On the lighter side, my doctor, whom I refer to as Dr. General Hospital, wore very low V neck scrubs with plenty of chest hair sticking out the top. He thought himself wonderful, I surmise… and he asked questions like:

  • “You do what for a living?!”
  • “You seriously went to college to study construction?”
  • “Why the hell do you live in Arkansas?”
  • “Why were you born in Salt Lake?!”
  • “What is your husband like?”

All unexpected, to say the least. He also asked if ever worked in the medical profession… like five times. Why?  Because we was totally convinced I have, at some point, had H1N1.  In fact, he said that’s likely what got be into this POTS relapse.

He kept telling me I was “funny” and had a dry sense of humor.  To be honest, it kinda creeped me out.  Necessary Sidenote: My mom and I, combined, were below the average age of the patients in the waiting room. I kid you not. I am sure he hasn’t seen a non-octogenarian (or septuagenarian or the like) in months. He must have found my relative “youth” (or immaturity) refreshing and/or amusing. I found him a bit bizarre.

He explained my health issues like this…

  • “Your brain isn’t telling your blood pressure and heart rate to get along. It’s like your blood pressure and heart rate haven’t talked on the phone in a while. Maybe your cyst is cramping the style of the part of your brain that maintains the connection.”
  • “Those headaches are your brain thinking it’s dying, but just for a second. It’s not getting oxygen when you stand, so it b@#&$!s at you for the rest of the day to remind you what you did to it. No medicine can fix that. The headaches will be the last symptom to go as we get this fixed.”
  • “You don’t look crazy. Are you crazy? No, you can’t be crazy, you’re too funny. Are you crazy?”

And so on…

Anyway, I am getting answers to my questions. (Although I swear Dr. General Hospital only asked about my degree so as to use the sort of language he thought would make me comfortable. A bit misguided.) And I am optimistic his recommendations will help me feel “different,” in a good way.

5 Responses

  • Holly on February 7, 2010, 13:33:31

    I was a rarity in my department too (pulmonology)

    The best part of waiting? You only have to wait because you’re early (and in some departments, they have puzzles)

    Reply to Holly
  • Peggy on February 9, 2010, 17:40:17

    Kate,First I pray that day by day you will feel better,My husband and I took many trips to AZ and it did help somewhat with my aches and pain and we cant wait until that day we can move out west.I live in New Jersey,yes the great Jersey Shore.My pain started back in the 80s when I got Lymes,and back then,they didnt know any thing about Fibro,and here I sit living in pain and nothing is helping me.God Bless you

    Reply to Peggy