Thursday, June 7, 2012


Okay.  So it starts yesterday morning.  I was supposed to get my third pheresis treatment.

Um, or not.  {Before I continue, I must say, I had a TERRIFIC person in charge of needle patrol, so it wasn't her.}  FIVE. UNSUCCESSFUL. POKES.  With a needle the size of a fork tine.  Yah.  Literally.  FIVE.  That's like a record for me...normally I'm like 3, and then I get to poke THEM. : )  But I've been getting this for 11 years through my veins.  They seem to be okay with two treatments, but the third one is too much.  I'm gonna have to just stick with 2 and get them more frequently if necessary.  My left arm (which got all the pokes) looks like a bunch of smashed grapes.

THEN, I had an appointment with my pulmonologist.  Now, I ADORE my Pulmonologist.   He is THE best doctor on the planet.  (Dr. Lovy at St. Mary's).  He has helped me SO SO SO much in the past year or so that I've been seeing him.  SO much.

Well, he's leaving.  His wife just had son number 3, and I totally get it.  He kept apologizing (probably because I couldn't stop bawling), and I'm like, that's life.  It happens.  But he was really special.  He really cared about ME, ALL of me, not just my lungs.  My previous pulmonologist (whom I saw ONCE) told me, "Well, you have a neuromuscular disease, you'll always be dealing with atelectisis (closure of the bottom of the lungs), that's just the way it is.  There's nothing you can do about it."

Dr. Lovy was like, WHAT??? He got me a vent, The Vest, and a cough assist.

Speaking of cough assist, I got my response from the appeal of the appeal for my cough assist machine.  Their decision was "unfavorable."  UN-FREAKING-REAL!  I spent HOURS on my appeal.  HOURS.  And all they base it on is the diagnosis code.  MG only has one diagnosis code, even though there are many types of MG.  For example, there is generalized MG, MuSK+ MG, AChR+ MG, congenital MG, ocular MG....and ONE diagnosis code.

So they denied me because I didn't have the right number.  Yes, I am serious.  Because the requirements I "failed to meet" were 1. the patient must have a neuromuscular disease and 2. that disease must significantly impair breathing.

Yes, I am serious.  Ya know, these panels should be made of patients or parents of patients.  I GUARANTEE the outcome would be different.

I know I'm supposed to be rah, rah, it's National MG Month...and be all informative and positive and stuff.  But honest to God, right now?  I'm starting think that it really doesn't matter what I say or do anymore.  What good does it do? 


Amy said...

Raising awareness for MG... I think being your REAL self is what thats about! People need to see the reality of what you live with. I think you hit it on the head for awareness month! I continue to lift you up in my prayers, and my tears are yours when I read about days like this. You are an amazing woman, and an inspiration to many. Please hang in there!

Kerri said...

Thank you Amy. That means a lot.