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The Elephant

Today was not a good day.  I woke up in the best mood with the best attitude but as the minutes wore on, the day deteriorated, rather quickly.

This afternoon, however, was the icing on the cake. We met with our new pulmonologist to go over Shelbie's CT scan on her lungs.  Just to recap, she had a CT scan last December and it came back showing her lungs scattered with nodules and calcification.

In light of Sam's Pulmonary AVM diagnosis, I really wanted to follow up on this since Shelbie does have respiratory problems and pain.  Of course, I always hold out hope that doctors are going to listen to me.

This guy was nice but did not listen.  He kept cutting me off and wouldn't let me get a word in edgewise! I told him first off that we have DC but of course he knew nothing about it.  I didn't expect him to but I did expect him to be willing to be educated. I told him of Sam's AVM's and that these nodules are suspect for that.  He agreed but rather than continue to talk about the obvious, the elephant in the room, he started coming up with all these far fetched notions of what could cause nodules in the lungs!

I kept bringing him back around to the elephant but he was not going to have it.

On one hand, he talked like PAVM's were no big deal but in the next breath, he said things like, "Is your son on oxygen yet?"  YET?? Like he was expecting that any minute!  It was all so disconcerting.
Finally, by the end of the appointment of just a word here and a word there, no complete sentences, he agreed we needed to do the Cardiac MRI to rule out Pulmonary AVM BUT...not until he made sure it was okay with the Cardiologist!  What the heck??!!  Since when did one specialist care about another's opinion?

In the meantime...we have to have a sleep study.  Sleep studies are the most useless diagnostic tool ever known to man. Who actually sleeps during a sleep study.  He says it's the best way to figure out why she stops breathing.  I tried to explain that this isn't your typical apnea, she is wide awake, walking around but can't breathe!  ugh....

It is rare for me to become so exasperated all at once.  Today was just more than I could deal with.  It's just been one frustrating event after the next. Being in such a rare situation sucks more than I could ever imagine!  Seriously!



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