Monday, April 7, 2014

19. And so it begins:   Pirogov, The Place Where I Will Leave my CIDP Behind

В Ту́лу со свои́м самова́ром не е́здят.                                                                    When in Rome, do as Romans do. 

Literal: Nobody goes to Tula with one's own samovar. (Tula is famous as city where the best Russian samovars are made)

I am in!  And now I turn myself over completely to Dr. Fedorenko and the staff and just let them do with me what they will.  They are in charge, totally. I am all theirs from here forward.  There is a certain calm to that, in spite of the fact that I can understand almost no one here at all but the good Dr. F.  The plus is he is here all day, lives 15 minutes away and is "totally accessible to me at any time" (I'm quoting him in that).  

So far he has walked me through parts of this rather vast historical hospital complex, to register, to pay for testing week, to begin my tests, which I have done.  It seems so strange to have my Dr. walk me to my ex-ray, to my MRI, to my lumbar puncture, etc. as well as to run out for cream for my coffee.  This is not my normal hospital experience, already - day one.

I clicked this photo of the old entry to the 19th century core building of the hospital from the x-ray room. An historical place of healing, a research hospital, as well. Old meets new. I am in the right place!  The nurses smiled very broadly and allowed me time for my quick photo. They are proud of where they work. You can see it everywhere. 

My room is within a few hallways from this window (above photo), but faces opposite and opens to a view of the surrounding forest of tall pines, oaks, birch trees still bare and wintry-looking. The large double window and the view is surprisingly calming, and it's quiet and comfortable here on the 3rd floor, which is the floor for isolation rooms during chemo. I am 'at home' and intend to do as they have me to.  

My room is efficiently arranged within about 10.5' x 18.5' (yes, I measured with my sewing kit measuring tape)  and includes the bedroom with a corner table and 2 chairs, the single bed, a spacious nightstand that is doubling as dresser. A separate section is the vestibule with fridge, microwave, cabinet and off that entrance room is the 3/4 bath. VERY clean, this level is the isolation room floor, which normally I would not arrive at until ready for chemo. But Dr. F. thought I could just enjoy it from day 1. And so this is my home for the duration, I believe. They will, once I'm to chemo and isolation, remove many of my belongings, hyper-clean everything in room, turn on the extra filters and UV protections, but my view will remain.  I like that this is 'home' for now. It may not look like so much to you, but I know for a fact that miracles happen here. I am in room 329, formerly that of Jeff, Vicki, Brooke, Lorraine, Linda and others who each arrived with MS and left without it.  It's a VERY lucky room. You can just feel it.

AN IMPORTANT CHANGE:  Dr. Fedorenko has just explained to me that there will be no more 2nd floor rooms for autoimmune patients. We will all be exclusively housed on 3rd floor from this week forward. More antiseptic, higher control, more comfort and ease for patients and also for Dr. Fedorenko.  We have no more floor 2 for any incoming patients.  This is excellent news for incoming patients!

Moving in:

As you can see, I have electric water pot for coffee/tea, and a tv (if I ever get to the point I want noise). 

No antiques other than the building and myself. I limited my decorating of the room to a photo of my kids/grandkids stuck to my wall (see above) and my Sferra light blanket and embroidered pillowcase (super soft 1000TC, of course) on my very own down-filled pillow from home. A girl's gotta have what a girl's gotta have, after all.  That deep window becomes my space for books, computer, the (to be opened at intervals) cards Linda Martin sent along with me when we parted in London (bless her!). And that deep window sill stands as a reminder of my home in Manti, which is also 19th century and has big deep window sills. I've definitely got this! 

And look who's name is on the door - that's me, doing as the Romans do, but in Russian: 

For those who are following in my footsteps, the following info from arrival last night:

  1. I arrived last night, slept quite well. My own down-filled pillow and lighter blanket helped make the room mine.  Dr. F. was fine about the pillow, and says I can have it in isolation, too. I will tuck it into microwave for a 15 second 'nuke' just to be sure.  
  2. My proudest moment was figuring out how to turn down the heat.  
  3.  There is not much space for storing clothing or anything else. A couple cubbies in the cabinets, 3 coat hooks - that's about it. You'll have 2 drawers, small, as well.  

This morning was my actual formal check-in, and I was walked to another building through underground hallways that connect the complex, to the bursar's office to pay for test week. The charge is in rubles, 30,000 for testing. Current exchange rate applied. Credit card ran through without any problem whatsoever. I think that is a great start!

Testing began today.
  1. Fasting blood tests (many) ahead of breakfast (which might have been cream of wheat).
  2. EKG
  3. X-ray of chest, sinuses (I think because I present with a light cold, he's being very thorough)
  4. EEG coming in an hour or so. And then I think I will be finished for the day.

Tomorrow's plan includes: Lumbar puncture for proteins (demyelination), MRI to search for the rare occurrence in CIDP of MS-like lesions in brain or spinal cord (very unlikely in CIDP). 

1 comment:

  1. Hello Susan. I am so glad you are writing this blog. I will follow you every step of the way, while waiting for my turn to "kill" that CIDP. :-) It feels so good to get an "insight" of what is going on. Thank you for beeing so detailed in your writing. Good luck to you as you go along. Big hug from me!! Regards Gro