Dialy-ween!!

Happy Halloween!

I woke up and felt ok today.  So i decided I needed to celebrate Halloween.  Dialysis is NOT going to ruin my halloween.

I dressed as a creepy baby doll.  I figured if I was going to puke for the rest of the day, I might as well look ridiculous doing it.

Dialysis-Post Day 1

Everything will be ok.  Everything will be ok.  Everything will be ok.   I know that.  But I am having a really rough time right now.

Just to be clear, I vomited all day the first day of dialysis.  I was nauseated and had diarrhea that lasted into the next morning.  The shakiness is similar to the plasmapheresis and lasted about 12 hours after the treatment.  It’s awful.  It feels like you are in a car and a boat at the same time.  And there are hot then cold flashes constantly.   You feel like you have a fever, and food ABSOLUTELY would not stay down.  Neither would pills.  Hope that tomorrow is better.  I am Fucking terrified.

Dialy-BARF

Dialysis. 

They say it gets better, but let me tell you it FUCKING SUCKS.  All I can do is sit here in denial and look at my life and wonder what the hell happened to me??  Where AM I??  Because this isn’t me.  This life isn’t mine.  Nothing about this is what I want.  I want to go back to kidney failure.  At least I knew what to expect then.  But right now everything feels shaken up, and I don’t even know what meds to take or what foods to eat.  I have eaten about 500 calories for the last three days. 

I feel abandoned. Abandoned, abandoned, abandoned, abandoned, abandoned, abandoned. I feel betrayed betrayed betrayed betrayed.  I feel angry angry angry angry angry.  I feel sad sad sad sad sad sad sad sad sad sad sad sad sad.....

I have to go throw u

(Later, when I read this it is so sad to me.  I was so close to tears at all times that my eyes would water when I was laughing.  This was what I consider to have been my rock bottom.  I was really scared and sad.  When I am sad, I get angry.  And I had no words to articulate my feelings.  But I find this entry fascinating.)

The Photos are in!

Yay!!  They got here!!!  I needed this.

What kidney disease??

Control

Out of my hands. 

Everything.

My body

My life

My sex

My choices

My career

My husband

I see a gorgeous mountain scene in front of me, with a pretty babbling stream and a great off-road trail.  The sun is shining and the breeze is soft and perfect.  I am ready to put the car into gear.  But I can’t get over this stupid first crack in the pavement.

Imagine knowing everything you want to happen 20 steps ahead of where you are, but you can’t get anyone else to help you get there.  WHY DOESN'T ANYONE SEEM TO SEE HOW URGENTLY I NEED HELP??!!

I just need a transplant.  I just need that kidney inside me.   It sleeps next to me every night, tucked inside the person I love more than anything.  He protects it for me, keeping it safe for the day I will be able to take it and begin dancing again.  It is so close to me, but a universe away from helping me feel any better. 

Breathe...

I have him.   And he is worth it.  What we will be is worth what we have to go through now to get to it.  At least we had this summer.  What a great summer it was.  I spent all summer in the city with Matthew.  And it was my favorite.

(Again, coming back and reading this entry, I sounded like a psycho.  Its like I was about to cut him open and steal it myself.  This disease is crazy)

HMO Nightmare

My insurance is an HMO.  I have had really appreciated it as insurance for my chronic illness for several years now.  Yes I need a primary care physician to see a specialist, but since I have a chronic illness, I mostly see one doctor: my nephrologist.  At least I did only see one doctor until I was diagnosed with aHUS...

I was diagnosed in December of 2011.  At that point I was joining my husband's insurance plan at the beginning of 2012, also an HMO.  We thought it would be best for us and we can always switch in a year if we hate it.  Little did I know I would be diagnosed with one of the rarest diseases requiring me to travel across the country to see specialists that are considered out of my HMO network.

My doctor was twiddling his thumbs when it came to my kidney failure.  As soon as I was diagnosed, I was screaming "transplant!"  But it wasn't that easy.  My doctor has never treated an aHUS patient before, ever.  He didn't know what a new kidney would do, or if my body would even take it.  He couldn't even find studies on it in journals.  So I was thinking I had to make this kidney last as long as possible.  Because if it fails, it's dialysis.  And if I can't get a transplant, dialysis will only keep me alive for 30 years tops.  I don't want to die at 62 (ironically the age my mother was when she gave me this kidney), so this wasn't good enough for me.  I hit the trusty internet.

I found a website for parents of children with atypical hemolytic uremic syndrome and immediately contacted the woman who founded the site.  aHUS is considered a children's disease because studies show that 40% of people that have it are children.  Honestly, I believe there are more adults that have it that haven't been diagnosed, but that is a different story.  I even had it for fifteen years before we knew! (I later was kicked off that website for posting "inappropriate hospital pictures".  I guess my IV pole dancing wasn't funny to them.  I thought it was awesome.  But I laugh off most of my pains)

The University of Iowa!  The place that studies my disease!  I decided I would need to see them.  I went to my doctor one more time to find out his plan.  His plan: wait until my kidney fails, then go on dialysis.  My plan:  Work my ass off to get a transplant so I can get back to my life as I know it.  My plan was way better.

I contacted Iowa and got an appointment to see them in person in September.  I figured getting my insurance to approve would be easy.  They are the only people testing for my disease, and the only specialists in the country.  WRONG.

Here's the catch.  I had to go to my primary care physician to get a referral.  Dr. Viera, a nice little lady used to treating coughs and everyday little things, knows NOTHING about me.  In fact, she seems terrified to touch me.  Usually all she does is check my blood pressure and send me to other specialists. She doesn't even have medical files on me.  I get an appointment with her and explain my need to get to Iowa for a transplant evaluation.  I told her all I needed was for her to write a referral to my insurance so I could go.  She assured me it would be done.

It was not done by the time I saw the doctors in Iowa.  My insurance is furious.  I called her office and they tried to submit a referral after the fact, but for some reason Blue Cross won't accept backdated referrals.  So I was going to be stuck with a huge Iowa bill just for taking my health into my own hands.

After my Iowa transplant evaluation, Blue Cross would not approve my transplant there.  They claimed I could get a transplant in Oklahoma, even though the Oklahoma Transplant Team has never done an aHUS transplant.  I don't know about you, but one thing I never want to be first in is SURGERY.

So the only option might be to change from a HMO to a PPO.  But we can't do that until January 1st 2013.  Meanwhile, my kidney is hanging on by a thread (and honestly I should have started dialysis a long time ago) and my head is getting cloudier by the day.  I think dialysis is looming closer but I don't want that.  It is going to be awful.  I have to hang on and keep fighting.  There must be some kind of loophole.  Does anyone have a spare 2 million dollars hanging around??

Sorry, I have kidney brain

Today I called a doctor's office to confirm an appointment three times.  The second two times I didn't know I had spoken to the same woman until she said, "Ma'am, we spoke earlier.  We had this very conversation".

Jeez this disease is making me look like a crazy person!