I'm Free!! For now..

Alright, buckle up.  This one is strange...Go figure.

As you read before, I got a kidney biopsy on Apollo, Matthew's kidney, on Wednesday.  They were supposed to let me go the next morning, but the doctors never came to talk to me.  Finally, at 5 pm, right when Matthew walked in from work, the doctor (a doctor I have never been treated by-always a thrill) was explaining to me the results.  We were told that despite the fact that my immune system is suppressed appropriately, I was indeed rejecting Apollo.  It surprised all of us, because when you normally go into a rejection, you can see it in the blood numbers.  My numbers didn't show a rejection, but the biopsy did.  

The next step was for these doctors to call Iowa to get Matthew's specific tissue typing, which they did.  They were then going to mix our blood together (sort of) and see if I attacked his.  I did.

My doctor explained rejection like a row of dominos.  Each one hits the next one and cascades down to the last cell which is holding a gun to kill the cell dead. My body is letting the first one or two Dominos fall.  Soliris is supposed to stop the FIRST domino from falling.  That's what it does.  So why my body is starting the rejection process at all is the great mystery.  Matthew and I want to believe if I just increase my dosage of Soliris, it could help.  But we have to wait for the doctors in Iowa to chime in.  

It's scary to see your doctors baffled. It brought up all the memories from the first 13 years I was sick with aHUS without a diagnosis.  Something is happening that no one in Oklahoma can explain (...yes, again).  They discussed with me my new options:

1) go under the knife to put another chest tube in my neck (Remember good old Click and Clack)
2)undergo plasma exchange: hook up to a machine and clean the plasma out of my body while replacing it with donor plasma.  (It's an awful process, much like dialysis, but in my opinion is harder on the body)
3) wait and see if the number of antibodies in my system decreases and disappears, then go from there, not knowing if it would come back and happen again.

At the same time:

1) switch out my Prograf medication (which is an Immuno-Suppressant that happens to also be toxic to the kidney.  That's a laugh riot.)
2)try to start a new medication called Belatacept.  It's an infusion drug that I could get at the same time as Soliris, which would be actually really convenient

I want you all to know, and I am writing it here to make it real.  Plasma exchange is what I was going through in 2009 when I was teaching at OCU.  I had to wear a mask and gloves in public, I became extremely weak, and occasionally needed my wheelchair.

If this happens, my quality of life will severely decrease temporarily.  But I'll be ok once I stop the plasma exchange.  I want to brace everyone for what could be a little mini battle.  It won't be as long as the one in 2009, because my creatinine isn't that high.    We caught it early, thankfully.

BUT there could be new suggestions from Iowa that might not include any of these.  This was just the options laid out to me by my Doctors in Oklahoma.  I will know more when Iowa gives their suggestions.  But I'm left feeling like this again: Lucky and Rare.