SERIOUSLY???

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? 

Relief

Well, my trach continues to heal, and this morning I actually felt GOOD for a while.  First step in getting over the "pheresis hangover."  Funnily enough, I have said several times that sometimes when I wake up in the morning I feel like I have a hangover but didn't get to have any fun the night before.  (Many of my MG friends agreed with that!)

Now for those of you who have HONESTLY never had a hangover, imagine the worst day of your life, you got 1 1/2 hours of sleep, you're nauseous, have a wicked headache, you feel like a thousand cactus prickers are in your eyes, and your mouth feels like you've licked shag carpet all night long.  You just feel miserable.  Almost like the flu, but you can't throw up and you don't have a fever.  (This is all what I've heard anyway....) {wink}

The day after pheresis, for me, is like that.  Some people have it and jump right out of bed and feel great right away.  Um, hate you.

No, really, some folks feel fantastic right away.  I, however, do not.  This time it's taking a couple of days, but we're getting there.  I really did feel pretty darn good for a couple hours earlier today.  Now I'm getting kind of tired, but I've been busy all day, as usual.

The other HUGE relief is that I'm done with my Medicare appeal...You know, the one where they are telling me I don't qualify for a cough assist machine because I have to meet the following criteria: (and I quote)
"1.  They have a neuromuscular disease (followed by a bunch of diagnosis codes...don't even get me STARTED on that...) and
2.  This condition is causing a significant impairment of chest wall and/or diaphragmatic movement, such that it results in an inability to clear retained secretions."

Um, SERIOUSLY???  Have these people HEARD of MG?  This cough assist helped me stay OUT of the hospital when I had pneumonia this past fall.  It was PRESCRIBED by my doctor.  Airway Oxygen already appealed the ridiculous decision because Medicare didn't pay them.  So now I had to file a "Reconsideration Request" of the "Redetermination Notice."  Excuse my vulgarity, but what a bunch of bullsh!t!!  Imbeciles.
Like I have nothing better to do with my time...

So yeah.  Now I'm just waiting on the SECOND "Certificate of Medical Necessity" (one was filed with the appeal.) to go with my letter, their form, and my 5 attachments.  UG.

So that's me in a nutshell today.  Crazy, busy, and relieved.

Quick update

One of the WORST things about this disease is waiting on doctors to get their poop in a group. ESPECIALLY non-specialist docs. 'Nuff said.

So as of today I am waiting on:

1. A referral by someone (with an M.D) to the home health care agency so I can get the use of a Medical Social Worker.

2. The "go" that my insurance will cover the Rituxan, and then the schedule for it.

3. The information about when/if I'm getting a cough assist machine to help me expand my lung volume.

I think that's it. Friday we go to Ann Arbor for plasmapheresis hopefully for the last time in 3 weeks. And hopefully I'll have the go-ahead on the Rituxan by then.

Thank you to all of my dear friends who pray for me and support me. This blog has meant SO much to me! Speaking of support, I'm gonna need it tomorrow...I'll be the big 4-o! UG!!

Quick Update

I'm so seriously wiped out.

My treatment went really well yesterday, thank God, and Jacob was WONDERFUL.

I'm going to be working with my neurologist and pulmonologist about getting something called a cough assist machine to use several times during the day to try to help get rid of the atalactysis (sp?) (smooshed lungs at the bottom).

Also waiting on insurance approval for the Rituxan. There's probably more, but I'm so exhausted I can't think straight.....more tomorrow maybe.