Saturday, April 26, 2014

40: ISOLATION Begins, Regimen Outline:

Вре́мя -- лу́чший до́ктор                                 

                              Time heals all wounds. 

Literal: Time is the best healer.  (but THIS staff ROCKS!)

I will try to get all of this right for anyone following for their own HSCT as well as to keep for my guide. It will be boring for others. This is HSCT-specific posting.

Isolation began noon today, Sat. April 26.  Here is what a 1st day in isolation looks like, setting up.

1. My luggage, most of clothing just went to storage

I am pleased to have arranged (or been granted) my own lounge clothes and PJs along with underwear. That beats paper or cloth hospital gowns for 12 days in my book, and I am a happy woman. (Maybe everyone works this out, but earlier everyone talked about hospital gowns only.)

NOTE: I did bring along a hand-held UV wand (internet, around $40-$80 at home). It's about 20" long, with 12" or so UV light (use only facing downward) that I used on computer, ipad, iphone, books, etc. and on my clothing as well, just for extra measure, and Dr. Fedorenko highly approved. I will leave it behind in clinic for future 'guests' since I have one at home, already. Thanks to my son, Rick, for this added knowlege, tool, caring!  This is the Verilux one I brought:

Could easily be over-kill on my part, but I've gone this far and sure do not want to be the first to ruin Dr. Fedorenko's clinic's perfect record on keeping patients alive. So, enough about that part.

2. Fitration system turned on in room, the large flow-way door between bedroom suite and kitchen/bathroom is now to be closed at all times, except short trip to fridge/bathroom, of course.

3. Bathroom UV lighting turned on at all times to control any bacterial growth.  You must turn it off and turn normal light on when entering, then re-start the UV process upon leaving.

4. Double exterior window closed, not to be opened at all for duration.

5. Staff only enters with mask in place. (within 20 minutes of writing that, it changed to full gown, mask, hair covering and booties to enter). NO one gets in without full covering - Dr. Fedorenko, too:

6. (Below: earlier photo, before the ISO doors click, Dr. F was not yet all suited up)  All instructions given for special hygiene washes (2 times daily, one can be following a normal shower), orange label on bottle. NO toothbrushing or oral hygiene other than this red mouthwash, to be mixed at 15/dilution and used 3 times a day. Dr. Fedorenko explains all in detail and is truly magnificent as he does (still, takes notes - yours might be slightly in variation to mine):

7. At my request: Inspection of fridge and instruction on what I may still consume of the self-purchased groceries. By this time I am contented by the healthy and rather bland diet and have no complaints whatever (well, okay -I have not done the tongue still).  From kitchen, microwave oatmeal 30-45 seconds before eating - always!  No yogurt but the baby yogurt the hospital serves. Boiled apples from hospital ok, and also the French-processed fruit jam I had bought. YAY.  Hard cheese okay, but microwave it, please. No chocolate, honey, peanut butter. I do not have fresh fruit, vegetables, nuts, as those were all definitely off the list. Will miss the Russian creamy honey on bread (bread that actually gets moldy if you try to keep it more than 2 days in a ziplock). Apparently they have fewer preservatives and agricultural sprays tainting honey, as well. It has been my favorite small treat. I can still use it in my hot tea, he says, but I don't drink tea.

8. Each day bedding will be changed out for fresh, and room cleaned thoroughly (room already cleaned daily, but not daily bedding changes).

9. Each day while in isolation, gowned/masked staff will clean walls, floors, bedding cleaning time is 1 hour and I will be confined to bathroom for my shower time while that is done. (see below)

10. No longer an option to wash our own dishes, as they now must also soak in solution and be done in special hygienic way by staff.  (This is not a bad thing at all, smile).

11. No visitors allowed. Period. Wifi is your lifeline.  Even Dr. F only opens door slightly now, masked, to talk as he stops by. Harder to hear and understand both, but otherwise he's got to suit up, too.  Write questions for him. He is so good to go over everything thoroughly with each patient.


HSCT process continues as follows (again, for me - this might vary for another HSCT patient)

7:00 a.m. Blood samples drawn (via your port), monitoring each day all levels. Dr. F goes over these with you each day, as well, and tells you where you are in the process. 

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:
7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

Report to nurse via button if top number is above 130, or bottom above 90. Also any temperature rise. They will closely monitor and medicate to keep it where they want it, so this is very important for patient to do!

Also, a scale is in room: record your own weight each morning:  pre-breakfast weight.

7:00 a.m  2-bottle IV (managing meds for organs, chemo post-changes functioning)

Morning . mid-day . evening RX pills per your small prescription pill packet (each person will have antibiotic, 2 different anti-virals and anything added to your specific need)  Pill boxes are marked in English, too, easy to know when to take. Anything extra between you and Dr. F.

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:
7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

NOTE ADDED (day 2) re Rx from home: There can be some changing issues Rx-wise, and while I was easily able to pull up my entire Rx list from computer for Dr. Fedorenko here, I think it would be a very good plan to keep a hard copy on your bedside table during HSCT so he can quickly refer while with you, in case he needs to add/remove anything during this stage. He has it in his medical records, but YOU can have it beside you for quick conference and aid in your care in this way. Dr. F just double-checked mine on one item before adding a small BP Rx. I was happy he didn't need to go review the charts and come back to complete that simple review. God bless whomever set up internet, huh! 

1 p.m. IV and 1 shot of Neupogen given (I thought this neupogen shot was not going to be added back in, but it does go along same as Dr. Burt's program in Chicago, after all).  Go Stem Cells!

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:

7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

2:00 p.m. or so, WASH DOWN:  Room is being completely washed down, including wall, by gowned, masked and hatted staff.  All bedding changed, and dishes are being soaked for washing. This is pretty heavy duty. She has washed down walls and windows, even. I managed a quick photo. 

Trolly next to fridge in anteroom holds all the 'suit-ups' and supplies. Your gauze packs for bathing can be found in the drawer, paper wrapped packets when you run out. 

Meanwhile, I'm finished now in my bathroom 'toilette',  (as the French would call it) too.  I have washed head to toe thoroughly with gauze pads and the clear solutions (2) with orange label, which is totally without odor or sensation, really.  Just clean.  Larger bottle for face, privates, and small bottle is for everything everywhere else (The small one is actually Russian Vodka - imagine)  Cleared of bacteria with solution head to toe (nurse helps with back, too) and then I can dry off and dress.  This act is repeated after my morning shower, as well - 2 times a day we must clean all body.  Literally sitting on the shower bench now with mouthwash swishing (red) and trying to use the rest of my 'in situ' time well while she finishes her work.  THIS might be tougher to sit in a bathroom for an hour than I ever dreamed. But here it is.  Aha! she knocks, and we're done in less than half an hour. We're a good team!  Well, I'm back in my bedroom and she is finishing her job in the anteroom/bathroom. Wow, I am so impressed, truly. 

Bubble, sweet bubble!

There you have it to 3:00 p.m. on 1st day. I will add to post as the day progresses if pertinent, but it's R&R and quiet time from here on out, one day the same as the one before.  

I'm not doing this again - this is Isolation:  day1, to be repeated each day as outlined. You will NOT have to sit through my blog posting of this every danged day, so relax. But you see what you're in for once isolation begins, I hope, and can relax in the knowledge that it, too, is all good.  

And now a nice nap!

Each day for first 2-3 days bloods will drop some, and then they hit that magic day when they begin to rise again. The stubble of shaved hair falls beginning at this point, and we truly have entered 'engraftment' stages. Meanwhile, I am going to stop here and enjoy rubbing my stubbly shaved head a while and just rest and take in this lovely miracle of HSCT. I feel so fortunate! 

P.S. I wanted to show you Sasha, another wonderful nurse I like so much. She has some English and a pocket translator that is orange - cool. Young and so pretty, she and Gala are my specialists at building a new covering for my octo-port each day out of special medical supplies, since the one thing in the world I am allergic to is non-allergenic tape - go figure!  These nurses are amazing. I love them all, and only wish I had Russian words enough to explain how special what they are doing is for all of us. But you can tell, they already know. They're healing us!

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