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Old Thu Feb 23, 2017, 11:51 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Spideog12,

I could tell you a lot of horror stories! Be vigilant!

I was supposed to be in a private isolation room. That is the ideal scenario. Everything comes to you. However, my hospital was overcrowded and I got bumped to a less than ideal room very quickly.

I would highly recommend that you bring a big bottle of hand gel and put it in a prominent location, if this is not standard practice at the hospital. Insist that everyone gels up when entering the room. That was standard practice.

Bring your own hospital grade masks to filter out airborne bacteria for your mother to wear when others are in the room or when she is being transported throughout the hospital. Give her a box of gloves to use when she is walking around and touching public things at the hospital.

If you can be her eyes and voice during the days that she is receiving the ATG, that would be most beneficial. Her ANC will bottom out close to 0 before it rises again. Make sure all of the nurses/doctors are following proper protocol. The first night will be the scariest.

I had a ton of different nurses, some very good, some not so much. My best nurse told me that I should be adamant whenever someone cleaned the tubes of my port with alcohol - that they wipe it vigorously for the full 30 secs with alcohol and then let it dry (for 30 sec??). That was protocol. It wasn't a quick swipe.

Do you have a choice in facilities? You really want to be at a place with experience treating SAA with ATG so that they know how to respond.

Wishing you and your mom the best!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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