Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Thursday, April 2, 2015

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.


 


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