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Thursday, April 2, 2015


Since I wrote last my sweet Sara has been in the hospital twice,with a possible shunt malfunction and an UTI.  Her shunt was repaired, but we are sitting on a time bomb because her shunt is 32 years old and antiquated by today's standards.  Shunt replacement is a surgery with many risks so we will continue on until it just stops working.  It's so hard to see her in pain, or scared, since she has no words to tell us how she feels, or what hurts.  We were in a great hospital with wonderful staff and they took very good care of her, but one of us was at her side constantly.

I saw my pulmonologist this past week.  I won't know if this new drug is slowing the disease process until I have another CT scan and that won't be for 3-4 months.  I waited 2 hours for him and then he was only with me for about 4 min.  Why does this happen...overbooking? Too many people with the same disease and not enough doctors to follow them?  Emergencies?  Who knows, but it isn't good for the mind of someone newly diagnosed...there are so many questions, so many fears.....and no time to ask the questions that haunt me.

I've discovered that having a disease with no cure is very lonely.  No one wants to talk about it.  It's as if we don't discuss it, it isn't there.  Or maybe people think they shouldn't ask me about it because it will make me think about it is ever off my mind.