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? 

Update

Okay. So I'm still alive.  Made it through one week of medicinal hell.  Today, which is Saturday, after my second pheresis treatment....and I'm pretty tuckered out.  This morning when I finally got out of bed (at 9:45), I asked my hubby if he had seen the number of the bus that ran over me so I could file a complaint.  I get up and think I can do something "quick a minute" and I'm reminded of how exhausted I am.  Now I just have to make it though next week.

Monday I have an appointment to discuss my fibro pain and management thereof.  I better not get the run-around because I am SO not in the mood.  I am sick of being in pain and someone needs to do something about it. I don't care what I have to sign...I need something so I'm not in pain all the dang time!  I'm sick of being grumpy, and pain makes me GRUMPY!!!

Anyway.  Then Tuesday is the dentist...drilling and rebuilding.  Ug.  Only remotely good thing is the happy gas, but they don't crank it high enough.  I think I'm going to take my headphones this time too.  The sound of that drill makes me CRAZY.  I literally get so tense I dig my nails into my hands and leave marks.  Then I'm sore for three days afterward from being so tense for an hour.

Then Wednesday back for my last pheresis treatment of this series.  They have been going PERFECTLY so I'm not even dreading it!  I'm hoping to have Judy and Emily again; Emily is a "newbie" to pheresis, but she has had YEARS of experience sticking people as she has been doing blood drives forever.  And before that she was a medic in the military....so she passed with flying colors for her first stabbing placing of the needles before the running of the pheresis machine.  Which I'm sure has a technical name, and I'm also sure I don't know the name of it.

Anywho.  Then after the pheresis I have an appointment with my pulmonologist.  Bye bye phentermine, which has been supposedly controlling my appetite and helping me lose the 17 pounds I have (over FIVE FLIPPIN' MONTHS)...Haven't been able to start on the vent at night yet because of the coughing....had a chest x-ray that we will go over, so hopefully that will explain the cough.

Then Thursday at 3:15 (after watching Jacob again all day, the day after a looooong medical day including pheresis) I have to have a bone density scan.  And Friday....I get to rest.  Maybe.  I still have Jacob.

I also still have to call the ENT to make the appointment to have the rest of the granulomas burned out....but I'm not even CALLING until my stoma is healed from the first round in the ER.  So welcome to the life of a chronically ill person.  Not. Much. Fun.

Now I'm exhausted so I'm going to lay down.

Pheresis From Hell (Long)

OH good grief. This is exactly what I felt like on Friday when I saw the "new" pheresis tech. My appt. time was 1:00. We were there at 1. She was there at one. We'll just call her Pokey (more relevance than just being slow). She fiddled with the pheresis machine for AN HOUR before she even started moving it into my room, in s-l-o-w m-o-t-i-o-n. Good heavens. Talk about molasses in January.

This was doing NOTHING for my confidence. I honestly don't think this child EVER had done pheresis peripherally in her young life. Not that age always means experience and vice versa. But in this case, OH yes. I was almost shaking by the time she started getting ready to start the actual treatment.

First, she scrubbed my anticube veins for like 30 seconds with betadine. I'm like, Helllllooooo have you ever heard of an alcohol wipe????? Then walk down the hall to throw it away. Then get new gloves on. Then scrub the other one for 30 seconds (she was actually looking at her watch). Then walk down the hall, throw it away (I'm like, you got something against a garbage can in here or somethin'??) Then down the hall to get new gloves. Here's an idea, GRAB MORE THAN ONE PAIR IF YOU'RE GOING TO TAKE THEM OFF EVERY 2 SECONDS!

Then the blood pressure cuff. They always do it on my lower arm, because if they use the automated ones, they always blow up WAY too tight and it hurts like hell and I get a ring of bruises around my arm. So she put the cuff on the top, of course, and walked away. If puffed up, my eyes are bulging out of my head and my hand is purple, but it finally stops and starts to de-puff. (Yes, that IS a word). But then it starts puffing up again.

I just yelled "Would someone get this thing OFF me??? It's killing me!!!" Well, THAT actually got her moving quickly! Ug. So she moves it to the bottom and it was like 145 over 85. I said, "That's it? I thought it would be like 200 over 140 by now!" Went over her head.

I should have known. First stick on my return arm. Holy $h!t. PAIN. In spades. Then she's moving it in and out like she'll magically hit a spot if she "jimmies" it around. Problem is, that's a razor sharp fork tong you're "jimmying" in there. Then she's poking the vein around it, so the pain goes from a 9 1/2 to a 12 and I yelled "Get it OUT! You're on a nerve!" So she takes it out.

(I do think I managed a normal-decibel voice once or twice before the poking began). So return arm, second poke, good to go. She takes blood first, which I'm amazed she remembered. Starts running saline, and it stings, but it's bearable, so I'm not ABOUT to say anything.

My draw arm has a huge vein. It's a little crooked, but Helen Keller could find it. Well, Helen she was NOT. I don't know WHAT she did, but this poke actually made me CRY. Usually it's just gritting teeth, squeezing Doug's hand praying, and going to my happy place. This was some of the worst pain I've ever felt. I don't know what she did. I'm in agony. Can't sob or yell now because I have a 1/2 inch needle in my other arm. So I lay there crying. Like back-arched-off- the-bed-pain. So many thoughts going through my head....I'll spare you the deep, philosophical ones and just tell you that if I ever see Pokey again, something is going to snap. And it's not gonna be me. : )

So it ran faster than Wednesday, purely by the grace of God, after she FINALLY got started. We were there til 4...should've been done by 2:30. My dear friend Linda was visiting me. She used to be the charge nurse at short stay where I was at St. Mary's and told one of the nurses there to call Michigan Blood and say "Never again." (About Pokey Helen). I was like, that's cool, you saved me a phone call!

So today I feel like I've been run over by a train. I can't hold the phone very long, because my veins are so bruised it hurts like heck to fold my arm up.

So that was my Good Friday. How was yours??

Update on Church and Pheresis

Church was very nice. The people were warm and welcoming. I was a bit bummed because the Pastor had been gone all week to a conference, so the former pastor gave the sermon. However, he was AWESOME. He did a first person message as Simon of Cyrene, the man who was forced to carry Christ's cross.

He warned of the inherent danger in doing such a thing, because, after reading from the Scripture, he said everything coming out of his mouth was just what HE thought Simon might have felt like. It was amazing though. He read of the account from the Gospel of Mark, who referenced Simon's children, Alexander and Rufus. Then he read passages from future NT books that mentioned Alexander and Rufus as members of the church, something that probably came about because of their father's encounter with Christ. It was really cool, and something I'd never heard done before. And something I'll never forget.

We are eager to go back Easter Sunday with Jacob and hear Pastor Dan preach and maybe meet some more people.

On the medical front: the treatment yesterday went FLAWLESSLY. There was a little hang up at the beginning because the nurse couldn't get a blood draw (and I would let her TOUCH any of the spots they use for pheresis...I can just see blowing a vein right before the procedure!). So we had to wait for a phlebotomist (I just love that word) to come up from the lab, and that took about 20 minutes. So by the time we finally got started with pheresis, it was a bit after 2. But then it was lickety split. Two needle pokes, perfect position, start the machine, ran perfectly, done in about 70 minutes. Right up there with a great run from the U of M. {and there was much rejoicing in the land!!}

So now we just pray my veins hold out for Wednesday and Friday, and then see how good I feel for how long before we do three more. It was SUCH an amazing thing, even with the delay today, which shouldn't happen in the future, how FANTASTIC it was to not have that hideous drive, and not take ALL stinkin' day to have this done. Beautiful.

New Doc and Plans

So. I LOVE the new neuro. He's SO nice. He's willing to take on my case and we decided to keep Dr. Teener as my "head" neruo., but we are going to follow-up with Dr. Sullivan. He's warm, kind, professional, and seems to know what he's talking about. Go figure! Also, instead of seeing both an ENT and a pulmonologist, he feels confident that a pulmonologist at St. Mary's will be capable of handling both my trach and lung issues. (Hallelujah for that!) So that means everything except my shrink (who manages my anti-depressants, anxiety and sleeping meds) and PCP will be at St. Mary's. Whoo-to the Hoo! It's so much better having most of my medical stuff in one place.

THEN, Dr. Sullivan suggested having pheresis Monday, Wednesday and Friday, then off for four weeks. Then Monday, Wednesday, Friday, and off for four weeks, and so on. Typically, plasmapheresis is done over a 9 day period, 5 times. Most of the time it's done in-patient, but it can be done out-patient if you have a port, fistula or catheter. I'm pretty sure my veins will hold up for three treatments in one week if they have 4 weeks in between to recover. I'm excited. This doctor seems to get me, and thinks we may be able to tweak my CellCept should this not work. But I think it will.

That, and finally sleeping at night....it's all good!
Oh, and I AM going to check out a new church tomorrow. So if you could just say an extra prayer to bind the devil from giving me a migraine....thanks!

Health Update

Okay: Yesterdays' treatment went perfectly, bruise and all. Dawn the girl that always does it, was back from vacation. Hallalujah! So I am done with this series of 5 treatments. After the pheresis, the nuero nurse came up and took a sputum sample (ohh yummy) and ordered a chest x-ray. They are sure something is going on besides the MG, becuse these 5 treatments should have me bouncing off the walls. Well, I'm clearly not bouncing.

So I go to my PCP and gab with him for a few, and he orders a medication for reactive airway disease which is like asthma, just not 24/7. Also ordered bloodwork, completel CBC, TSH, the usual suspects, but then added a mono test. Nice.

Got a call from the U of M...I do NOT have pneumonia, thank GOD!!! Nothing icky showed up in the sputum, well, except the sputum! Tim says, "all that's really on the chest x-ray is bilateral opaque striations due to atelectasis which we saw in January, so..." I was like, Um, can you repeat that in English?

Basically the bottoms of both lobes of my lungs are stuck together because they haven't been used in so long; i.e. my vital capacity is about 50% normally. Which means I can move 1/2 as much air as a person with healthy lungs can. This is not a LUNG disease, per se, it is a direct result of the myasthenia.

This is the treatment according to wikipedia (but the docs didn't seem terribly concerned because they've known about it since January, and haven't said anything to me):

Treatment is directed at correcting the underlying cause. People with chest deformities or neurologic conditions that cause shallow breathing for long periods may benefit from mechanical devices that assist their breathing. One method is continuous positive airway pressure, which delivers pressurized air or oxygen through a nose or face mask to help ensure that the alveoli do not collapse, even at the end of a breath. This is helpful, as partially-inflated alveoli can be expanded more easily than collapsed alveoli. Sometimes additional respiratory support is needed with a mechanical ventilator.The primary treatment for acute massive atelectasis is correction of the underlying cause. A blockage that cannot be removed by coughing or by suctioning the airways often can be removed by bronchoscopy. Antibiotics are given for an infection. Chronic atelectasis is often treated with antibiotics because infection is almost inevitable. In certain cases, the affected part of the lung may be surgically removed when recurring or chronic infections become disabling or bleeding is significant. If a tumor is blocking the airway, relieving the obstruction by surgery, radiation therapy, chemotherapy, or laser therapy may prevent atelectasis from progressing and recurrent obstructive pneumonia from developing.

So now I'm just on hold to hear about the next time I have to have pheresis...I'm hoping it's at least 2 weeks. They can't do the Rituxan until I'm better...Stronger. Haven't heard from insurance yet, so I don't know if they can do it or not anyway! Tick, tock, tick, tock.

I'm OH-so good at this waiting thing. (yah.)

Beef and Bruises and Bathrooms

WARNING: IF YOU'RE SUPER SQUEAMISH OR A VEGETARIAN OR A MEMBER OF PETA, SKIP THIS POST.

So we got our cow.

And she's cute.

Dang it.

Her name is Gracie. Jacob knows her from going to Auntie Shawn's house...we totally have to rename her. Maybe I should take a vote: lots of people have suggested names on facebook already: French Fry, UmmUmm Good, Supper Bell, etc. We're thinking T-Bone? Yes, we're going to eat her. Sorry if that shocks your sensibilities. I'm already getting attached. The only thing that will save me is that she has bad joints, so she would eventually have to be "put down" for her own comfort anyway.

But she's so stinkin' cute. She even moos cute. Sheez.

Secondly, the bruise part of the post. I'm FINALLY feeling better from the pheresis. However, this has to heal by Tuesday:

Purty, huh.

My vein blew Wednesday, but I had to go back for treatment yesterday...the vein held, but holy bruise Batman! I'ts creeping onto the top of my arm and everything. It's a bit tender! I need to ice it and hopefully it will be okay for my last treatment Tuesday. Last for a few weeks anyway, unless I start the Rituxan before then.

Finally....drumroll please.....Jacob is going potty on the big potty!!! Doug's mom watched him while we were in Ann Arbor yesterday, and she just sat him on the potty seat and he went! And he kept telling her when he had to! Just like that? So last night we get home and you'd think he'd go for me? NOPE. Not until the third time he told me he had to go anyway!! And today he's only had one "oops" and he was outside working on the truck brakes with Daddy, so he obviously had more important things going.

Shawn told me this morning when they brought the cow over that he had been watching the other kids in daycare use the potty, and understood that they didn't wear diapers anymore. Sweet!!

So that's what's new in my life. What's new in yours??