A Zebracorn, that's me.

They decreased my steroids to 40 mg!!!  I am so relieved.  My face isn't getting huge yet, but that doesn't mean it won't.  If it does, it does.  But I'm just keeping you posted on that.

This steroid experience has been slightly different than the ones with which I'm familiar. I have been far less of the angry sort of Prednisonia of the past. This Prednisonia is more tensely anxious and impatient. She has panic attacks. She is, dare I say...flirty?  She's been pretty fun, aside from the physical nonsense that comes with the personality change. I can't believe I'm saying that. But I think the difference here is that this encounter has thrown my mortality up in my face again.  I always appreciate that.

You see, I recently had the pleasure of two life changing and eye opening events before this bout of sickness took its place.  I was chosen to travel to Washington DC for Rare Disease Week on Capitol Hill so I could meet with state representatives about rare disease legislation.  It was thrilling, and I learned so much.  I felt...important.  Something I haven't felt living in Oklahoma for years.  I then joined Global Genes by speaking at an aHUS Meet up in Pensacola, Florida.  I met a group of other aHUSsies and speakers that were fantastic humans.  But I realized from these two encounters how scared I live my life in Oklahoma.  

The thing is, I feel invisible here.  I have for quite some time.  I only thrive when I leave this place.  I can't really do theatre here, I can't teach here, I can't get cast here.  People don't see me, I'm invisible.  It's so strange.  But when I am doing advocacy work, I feel like I am DOING SOMETHING.  I am helping people, and even if I don't get a direct validation of that, I feel like I am contributing. 

So I appreciate this little flick of reality pushed in my face.  I am not finished fighting.  I am on my second kidney transplant at the age of 34.  These things don't just automatically fix you.  And I'm no normal double kidney transplant patient either.

"When you hear hoofbeats, think horses, not zebras.  We are the zebras."

It's the catch phrase of rare disease.  But it implies that there is a grove of rare Zebras running around somewhere together.  That's not it either.  We're Zebracorns.  Yeah, ZEBRACORNS.

So maybe I've somehow inadvertently made myself "invisible" here on purpose.  I have bigger and better things to do anyway.  There are other people sitting in hospitals waiting for their young intern to suggest this "rare disease she read about in a paragraph of her text book" that just might be the thing that saves a life like mine. 

So consider this my acknowledgment of that energy. 
This Zebracorn isn't going to hide and wait for people to notice she's dying.  She's a fighter.  This rejection will pass, and I will be ok.  And then someday I won't be ok.  And then we will handle that when it comes.  And that is the life of a Zebracorn.

Prednisone Bistro, table for one please.

I am getting ready for my 9th night on high dosages of steroids. The past four nights since coming back from teaching in Louisiana have been like spending time with a different version of myself. A Tonia that I am very familiar with now, but haven't seen in a while. Tonia isn't Obsessive Compulsive. Tonia does have anxiety issues stemming from PTSD, but has learned to control them with medications and other forms of therapy. Tonia has a sense of humor that is founded so deeply in her soul throughout the years of struggle, it's almost difficult to make her NOT laugh. Tonia makes doctors laugh when they are trying to be serious. Tonia doesn't clean things. She would rather spend her time with a hobby or something or someone she loves, and she doesn't love cleaning. Tonia doesn't cry when she's sad, so she cries when she laughs because those tears have to come out sooner or later. 

I, Prednisone Tonia, let's call me Prednisonia, am very different.  Prednisonia is short tempered, antsy, flicky, sharp, emotional, manic, sometimes mean, paranoid, self-conscious, obsessive compulsive, and narcissistic.  She yells at doctors when she feels like they aren't moving fast enough, she lashes out when she gets defensive, she spends literally 12 hours a day cleaning compulsively, and she stays up all night hallucinating in a zombie-like haze because prednisone keeps her awake and ambien keeps her hypnotized. Last night I folded laundry until 5 in the morning watching TV and laughing with (even high fiving) invisible friends in my living room. Yes, Prednisonia is a scary distorted, countermask of Tonia. I teach a movement class about finding countermasks within the students' personalities. It's a scary thing to confront.  Tonia has come to recognize Prednisonia as part of herself. I'm even growing on her a little.

Prednisone and I have a long term love-hate, mostly hate relationship. I have been on and off high dosages of steroids six times.  Two of those times were for transplants. They wean you off pretty quickly for those, but they start you at mega doses at first. I have hallucinated spiders and bugs on my hospital bed and things like that on mega doses. But I compare steroid side effects during transplant to being pregnant.  You hate what it's doing to your body, but you have a beautiful baby when it's all over. Steroids without transplant is all negative side effects without the euphoria of knowing you have a newly functioning organ that is making you feel amazing. And since I have developed PTSD throughout the years, now panic can set in easily.

Long term high dosages of steroids deform my face and body.  I lose my curves and my face gets round (Moonface, they call it).  They make everything hurt.  My skin gets thin and acne appears, I start growing hair on my face, I stop menstruating eventually, and emotionally I become angry and frustrated at what is happening to my body. I know I have postings about steroids from years ago, but I am trying to document this from a different perspective this time.  I am going to really try to channel all the extra adrenaline into positive things, like advocacy, my career, and even this blog. 

Today, I got my blood drawn.  I am finding that the pinup is actually serving as a fantastic distraction and therapy for my anxiety. It makes me feel good about having to do medical stuff.  I did this hairstyle in the lobby in five minutes with three bobby pins, no curling iron, and no hairspray. I was pretty proud of it, and it cheered me up. 

 

I even got to see one of my phlebotomists I haven't seen in years.  I used to be one of his "usuals" before transferring to the Cancer Center. It was nice to see him. He told me he was afraid when I stopped coming a few years ago because I looked so sick he assumed I had passed away.  

Wow.

 

After the blood draw, which was slightly more complicated than usual, my friend, Mia, did my hair for me.  She did a great job. I love it! 

Later, I got the numbers back from my labs and my creatinine was 1.4.  That's a great number considering it had gotten all the way to 1.9 last week the day before my biopsy. My doctor says he isn't going to change my prednisone dosage (no amount of lip pouts and eye batting will change his mind on this.  Believe me, I tried.)  until I'm back down to my "normal" which is about 1.1. That means Prednisonia is going to rage on these steroids for another five nights before any side effects get better.

One thing: This little episode was the largest reason I didn't jump back into full time work right away. When things go wrong with me, it's never simple. And worst of all, people who have me in their life have to face that Healthy Tonia is temporary.  She exists in pockets of time, and when she surfaces, you better be ready with a party because she will be up all night begging to go skinny dipping in the ocean. For that reason she is half her age and twice her age at the same time.  So give Tonia a break when she gets back. She'll want to be a little crazy for a bit to make up for some lost time, but she means well. And after everything I'm going to put her through, she will be so happy to resurface for a great all night party on the town. 

Any town.

Seriously, get her out of here if you can. Oklahoma is crushing her like a dying star.

So, 2:35 AM, what should I do now...?  hm..maybe it's time to reorganize my underwear drawer...

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.

 

Time to fill you in

So this morning I was admitted into the hospital for a kidney biopsy on Apollo, Matthew's kidney.

Since the transplant two years ago, things have been great with the numbers.  But recently, during routine checks, the numbers have been freaking out.  Six weeks ago, my creatnine went up to 1.6 (1.0 is ideal).  So we adapted some meds, and it went down to 1.2 again.  Then two weeks later, it was 1.7.  Not wanting to risk waiting around too long (this is my second transplant, after all), I asked my Dr. if he wanted to do a biopsy.  He said it wasn't a bad idea, and that we should draw labs one more time to make sure.

Yesterday I drew my labs, my creatnine jumped to 1.9, and my blood pressure was around 160/100 (really really high for me since transplant).  My doctor called and didn't give me the option of backing out of the biopsy.  He said he had tested my immuno levels to make sure it wasn't a mild rejection, which it isn't.  He checked to see if I had a virus, and I didn't.  So he is a little baffled.  Always a scary sign.  I am planning on contacting Iowa tomorrow just to keep them up to date.

As a side note, my great friend Chelsea brought me some essential oils to help with the kidney and blood pressure issues (lavender was my jam).  Let me note that nothing has been able to bring my blood pressure down, but this morning when we arrived and they tested it, it had gone down to 126/88. Pretty much the perfect level.  Those oils are really intriguing me.

So today we waited around a while before we did a biopsy, during which Matthew and I took a few pictures of course.
  :)

 Waiting to get checked in

 

Waiting for the Biopsy , Matthew was a nervous wreck today.  But can you blame him?  What a sweetheart.

  

 It was hard to get these zebra shoes on with those rubber hospital socks, trust me.

Now we are waiting for results.  I am staying overnight by myself because
Matthew has a long day at work tomorrow.   There's a beautiful spring storm and I consider that a great omen. After all, I have a zebra umbrella now!:)

I will update as soon as I know more tomorrow.

Thank you so much for your kind words and solid support, everyone.  I appreciate your reaching out
We never feel alone in this.