Wednesday, January 14, 2015

One Willing

I'll do two posts tonight so I don't miss the beat of my 29 gifts project but back to the heart drama.

FINALLY!!!  Finally got somewhere on the cardiology referral.  I got a call from a group in the city who have several Cardiologists.   I hadn't specifically chosen a doctor, I asked our family doctor last week to choose one that he thought would be a good fit for us, knowing our history and what not.

Well, apparently it didn't really end up working that way.  When the scheduler called, she said, "There is one doctor who is willing to take your case."  Then she said his name.  I don't know him.  I've never even heard his name which is fine but I was kind of stuttering over the way she said that...One doctor willing...

Hmmmm...

"What do you mean exactly that only one doctor was willing?"
"Well, the group met about your case and basically, only one doctor said they would be willing to take on your son.  The doctors here like to deal with adults and your son is not an adult and has a different kind of situation."
"He is practically 17 and in one year, he will officially be considered an adult.  What were the doctors told about our case?"
"I'm not sure, it's just based on the echo studies we received."
"Actually, he does have an Orphan disease.  I want the doctor to know that before we come so we don't overwhelm him.  I'd be happy send him some brief background on it if that would be helpful.  There are less than 200 people in the world with this disease so I don't expect him to know about it."

The nurse was really nice and inquired further about Sam's condition.  I gave her the Reader's Digest version and she told me that her brother just had a bone marrow transplant in September down in Texas!  So, we just kept talking about stem cells and bone  marrow failure.  It was interesting and she was very nice.  She assured me that the doctor who is willing is really good and will be a good fit for us, he isn't afraid to learn new things.

I hope so.  It doesn't make me feel very good knowing that out of 8 or 10 doctors, only one person wanted to deal with us!  Sad, but that continues to be our reality.

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