Monday, January 24, 2011

Recap Of Day One

Wow, what a whirlwind day.  We started off bright and early to catch the 6:40 am shuttle to the clinic.  We arrived about 7:20 am to a very impressive entrance.  Based on all that we knew or learned about the Mayo Clinic, we were expecting a world class experience.  We were excited, apprehensive, nervous, all at the same time.  We knew that we were no longer in Kansas anymore when we were directed to an information desk, that just so happened to have a garment check.  Who knew !!

We began working on the obligatory new patient paper work, and before we could finish it, they called us back to the exam room.  Rondia got to wear the very fashionable hospital gown, and in short order, the doctor came in.  He proceeded to impress us by taking his own history and physical.  He was very detailed orientated, and not only made copious notes, but also review her past medical history in fine detail.  After about an hour of understanding and asking, he (and us) felt like we had a clear understanding of the past and current situation.  He ordered some lab work, and took two biopsies.  It will take about 48 hours for the results to come back. One of the things that he was testing her for was something called measuring the P450 enzyme.  This apparently indicates how predisposed she is to allergic medication reactions.  Well, I think that most of us can answer that question without the lab test, but whatever.  Rondia was taken to the photo lab, and  some pictures were taken of her condition.  He then asked if he could call a floor conference, which is basically like a consultation with all of the  MD's on the floor.  I bet that there were 20 or 25 that filed through in quick fashion that ended with a hallway conference.  It was the unanimous verdict of all the physicians of the same diagnosis.

In the end, he stated that he did not feel that we had a Stevens-Johnson Syndrome diagnosis, but rather a generalized pustular psoriasis condition.  It apparently is even rarer than SJS, with them seeing about one diagnosed case a year.  This brought some relief, but also some new concerns.  The case last year was also triggered by a Plaquinil reaction.  The doctor suggested that this won't be a quick recovery, and would not be surprised if it took six to nine months for her skin to completely heal.  He will be following up with our Paducah doctors, and working out a therapy of cyclosporin.  We may also be doing some follow up visits with Vanderbilt as well.  Some of these details are yet to be worked out.

After we had spent about three hours with the physician, we were completed with this phase of the journey.  Finally getting some specific answers to our questions !!

We had a couple of hours to kill before our next appointment, so we sought out a local recommendation for lunch.  Neither of us had had anything to eat all day, because we suspected (correctly so) that some fasting lab work would be required.  Anyhow, the guy at the coat check recommended a place called Newt's that was within close walking distance.  He said that they had the best hamburgers in town.  We strolled in the tropical 24 degree weather, to the upstairs bar called Newt's.  Just a small joint, probably only has about 12 or 15 booths along with the bar area.  We knew that this was a great place when the menu contained mostly hamburgers in various configurations.  This and all the plaques and awards on the wall proclaiming the spoils of high community recognition.  It lived up to it's name, and the meal was fantastic.

After lunch, we had an appointment to learn how to properly apply the new medicated cream, and wet wraps to help it work better.  Again, the staff and physician were just amazing in their knowledge, and compassion.   We learned about the new process, practiced it, and after about four hours of this, we were on our way back to the main entrance to catch the shuttle home.  We were armed with new medications, new treatments, and lots of paperwork to read.

We arrived back at the hotel at about 5:00 pm, and just as soon as we walked in the door, my phone rang.  It was Rondia's sister-in-law, asking if we had enjoyed our lunch at Newt's.  I said, but of course, but how did you know - we had not advertised that fact anywhere just yet, and didn't run into anyone that we knew (although we did run into a couple from Pikeville, KY this afternoon).  Come to find out, Rondia had left her phone at Newt's, and when Sherry called, she got to talk to some of the staff there.  Too funny !!

In order to properly do the new wrap treatment back at the hotel, a trip to Target was in order.  We needed some clothes, sweat suits, towels, and something waterproof to lay on the bed.  I took this opportunity to go back downtown to retrieve Rondia's phone.  Once at Target, I began looking for the items on the list.

I took all the Target stuff to the car, and headed back to the hotel.  After a quick stop at a local Mexican restaurant for chips and salsa to snack on, I was back in our room.  After snacking, we proceeded to do the wet medicated wraps on our own, successfully.

We have one more appointment in the morning with an internist in the Dermatology department, then hopefully it's back in the car and heading south.  All for now, again, thanks to all of you for your thoughts and prayers.

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