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Old Wed Jan 27, 2016, 10:30 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Skip - the experience can be inspiring, humbling and sometimes fairly unpleasant, but ultimately uplifting - you can now start fighting to be cured and healthy! After only 150 days I feel remarkably better than before the transplant when my disease was taking a slow but steady toll on me for years. You sound like you're in a good frame of mind. Some random advice -

Can't thank your care givers enough - my nurses and doctors were great - my wife was amazing - they all appreciate being appreciated.

Keep everything as clean as possible - I limited visits to wife, kids and brother - and made sure they wash and wear gloves. Have disinfectant wipes to wipe down everything - table surfaces, remote controls, phones, handles - wash your hands frequently and use mouthwash to help avoid dry mouth and sores from chemo - keep your teeth clean. Take and enjoy showers - I initially hated them, but learned from this board to relax and find some pleasure in standing in the warm water - and the washing became a ritual that forced me to get out of bed and on with the day.
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Prepare where you'll be after the hospital and make sure its very clean and as disinfected as possible - nows the time to make any home repairs, fix or replace appliances - thorough clean and dust/ sanitize everything you can. I was a bit fanatical, but I found the cleanliness rituals comforting and likely very helpful.

Listen to music in the hospital - don't stop eating - even if its only rice crisps - take time to do and enjoy small tasks - taking showers, putting on lotion - they became little rituals for me and something to focus on

I found email and this board helped me stay connected to the outside world during five weeks of semi isolation in a hospital room.

Stay positive and believe you can overcome any setback.

Best wishes,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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