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Old Mon Mar 24, 2014, 06:37 AM
Mike-in-MI Mike-in-MI is offline
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Join Date: Mar 2014
Location: Detroit, MI
Posts: 2
Feelings thus far

URGENCY? In both hospitals, I never get the sense that time is of the essence. Maybe this is true, maybe Doctors are told not to panic. Transporting the bone marrow biopsy took days (it's a 45 minute drive from one hopsital to the other). Once they suspected AA I read-up (found this forum) and wanted to start IST right away! They decided to wait until they were certain.
I also asked if her two siblings (wife and siblings are in their 40's) should be tested for HLA to see if they are a match to donate bone marrow. They said we can wait a couple of days to see how things go. Her one brother lives in Tiawan so I want him to start thinking about a test soon.

WEAK/TIRED At first, my wife was frustrated with being in the hospital. The kids would visit, see that Mom is just sitting in bed watching TV (everything will be OK). Then other blood levels have started to fall (hemoglobin = 7, white blood = 1.5) putting her at risk of infection and almost no energy. This has been the most difficult to deal with for me and her mom.
This is why I came to the forum. Wanting to know is this the "darkest before the dawn moment"?
She is not on oxygen, not on a machine taking her vitals, not in ICU. I am trusting the doctors are doing what is best. Sitting with her for hours and watching her do nothing but sleep is not comforting.

Facebook At what point do you announce to the world that you are sick and how much detail do you give? I know it's a personal decision. Some friends online share everything, others rarely post (I'm slowly giving up on Facebook). We were in the hospital for 10 days before making it official with a post. Me, being out and about, got tired of talking to people as if nothing was wrong. I needed the cat to be out of the bag. It has come with mixed results; some people offer to help with kids (great), others want to ask a thousand questions and give their own medical diagnosis (no thanks).
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