Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, June 29, 2009

What would you do?

I'm feeling a little bit angry this morning. We were told almost 4 years ago that Angela had Achalasia, and that her GI doctor had never seen an esophagus like hers, and pretty much left it at that. I asked if we should go to Mayo, and he just kind of shrugged his shoulders.

Angela should NOT have gone this long without treatment. Plain and simple, her GI doctor should have sent us on to someone who HAD seen it before and knew what to do about it. At a bare minimum, she should have been having endoscopies and esophageal biopsies done every 6 months, because her risk of esophageal cancer is very high.

Then there is the fact she has been SUFFERING with this for all these years. HELLO!!!!! We have had YEARS of wretching, and her having food stuck in there. And, from reading the blogs of other people who have Achalasia, she probably has food that sits there for hours at a time (or even a couple of days!) which causes the esophagus to become weak and stare eroding. Angel hasn't had a scope in nearly 4 years, so we have no idea what it looks like inside there. Her tissues *could* be fine. Or, very worse case scenario, they are NOT and we're looking at much bigger problems. The point is, it should have been monitored and we shouldn't have been just left to wander around life thinking everything was ok.

What would you do? How would you handle that? I don't think it should be ignored, but I don't know what to do either.

2 comments:

Courtney said...

I've been following this story closely, and my heart hurts for all of you. I can only imagine the frustration and fear you're feeling.

I keep praying for good news for you guys.

Cathy said...

I’d cry and pm you, I’m sorry this is happening to your princess