Once Bitten, Twice...

Here is the complete photoshoot from today's Vampire Pinup Infusion. It is a little less pinup than usual, but it's October and I had leftover blood from playing Lady Macbeth last weekend. :)

I call this shoot

Once Bitten, Twice Tranplanted.

 

 

A Long Overdue Update: Part 3

In the third week of treatments, things got really crazy. Yes, everything up til now was just the normal kind of crazy we're so used to experiencing.

It was my birthday week, and the Oklahoma Blood Institute that performs my plasmapheresis couldn't schedule me for the normal Monday and Tuesday mornings I wanted. You have to do plasmapheresis for two days in a row to make it work best. So the only option, since I was leaving town for a Rare Disease Patient Summit that Wednesday, was to be admitted on Sunday, do plasmapheresis, stay overnight, another round of Plasmapheresis in the morning, Chemo and IV Soliris in the afternoon, and release me in time for rehearsal that night. Wow! What could go wrong?

Everything.

Sunday went smoothly. I had to remind the doctor in the hospital that I was doing everything in two days, because he thought he had four. I have no idea why four would have been necessary, but anyway...  On Monday, my birthday, I woke up to the scheduled plasmapheresis. Next on the agenda were all the IVs I needed. I received the steroids, the chemo, and Soliris, my normal routine. Then the nurse said I would be getting an additional drug, IVIG. I knew my insurance had denied IVIG for some reason, which is why we weren't doing it outpatient. But the doctor said he didn't care, I was going to get it.

This drug started infusing, and about a half hour in I started feeling a horrible lower back pain. It started to spasm, and sped up so quickly it started syncing with my heart beat.  It would pulsate pain for 12 beats and then ease off for 4 beats. This got more and more intense until I couldn't speak through the pain any longer. As I was writhing in pain, Matthew snuck in a video of me.

Then I read the bag of IVIG and saw something alarming. The solution of IVIG had been mixed in sucrose. That may not mean much to most people. A month before this it wouldn't have meant much to me...

FLASHBACK TO A MONTH BEFORE.......

Dr. Nephrologist: I want to give you IVIG. It's a really potent drug and it's going to make you feel really crappy.
Me: Ok, fine. As long as it does the job, I'm ready.
Dr. Nephrologist: Just don't let them mix it in sucrose. It would be bad. It's kidney toxic. (little laugh) They won't, but I know you like to know things, so just make sure they don't mix it in sucrose.

FLASH FORWARD TO PRESENT SITUATION......

I see the word, Sucrose, on my IV bag, and I hear horror movie music screeching. I text my doctor, he calls, and I tell him what's happening. He tells me to stop the IV and hand the phone to the nurse. She flushes me with saline and says she will be back after hanging up the phone. I start worrying.

Ten minutes later, my doctor rushes in to my hospital room, something that rarely happens.

Dr. Nephrologist: Do you want your bed, or do you need a wheelchair?
Me: Whatever is faster. Bed?  Why? Where are we going?
Dr. Nephrologist: We have to get you down to dialysis.  We have to get that poison out of you before it kills that kidney.

Five hours later, I finish dialyzing at 10 pm, the same night I turned 35. All we can hope is that we acted fast enough and that I noticed the mistake early enough to get the poison out before it really caused some huge damage. Two days after this incident I was to leave for California, but if I was going into renal failure I would have to cancel.

My doctor called Wednesday morning and told me to pack my bags.  I asked him what my creatinine was. He said again, "Pack your bags."

Interesting...

Also, Ryan West (Black and White Photos) and Dan West (Color Photos) stopped by before the whole poisoning fiasco to take more photos. Behold, a realistic look at what I do in the hospital:

A Long Overdue Update: Part 2

We had to postpone plasmapheresis for a week because of the C. Diff infection. It would be too dangerous to start it while fighting C. Diff. So Mom went home, and we prepared for the battle.

The first week went as smooth as you might imagine.  I demanded we perform everything outpatient so I wouldn't have to be admitted overnight and miss my first night of Macbeth rehearsal. It was more work for my doctor, as in more phone calls, but I got to sleep in my own bed each night and still go to rehearsal.

The plasmapheresis went as well as you imagine.  It leaves you shaky and weak. and the chemo injection site hurt horribly. I couldn't sleep because of the pain in my arm. I didn't learn until week four that it was possible to be given intravenously to avoid the pain and bruising.  Of course...amateurs.

                                      
After my first two treatments, it was revealed to me we were doing this for FOUR weeks, not one.  When I confronted my doctor with this information, he denied ever saying it would be one week. But I reminded him of the temporary groin port he had wanted me to get that would have only lasted one week, and he confessed the groin port would have been a mistake. It just goes to show you, kids, QUESTION EVERYTHING. Because they aren't thinking of everything, and the numbers are most important. Your convenience isn't always the first priority even if that means putting you under the knife more often sometimes. 

I also stopped leaving the apartment for all other occasions in order to avoid contact with other people and hence, infections. If I did venture out, I had to wear a mask and gloves.

 But Matthew and I kept optimistic about the progress, despite the fatigue and nausea.  It was all worth it to save Apollo. He is the most important thing, and the light at the end of this tunnel.

Meanwhile I got pictures back from a shoot I did with Photographer, Ryan West, before the surgery.  I love them, and they were really fun to shoot! Yes, that is my wedding dress, and it is so much cleaner now! No one ever suggests jumping in a pool to brighten it up, but it really works! :)

Photos by Ryan West Photography.

A Long Overdue Update

The last time I posted a health update was over a month ago, and I apologize for that.  Things have gotten wild.  Chemo and Plasmapheresis have taken up a lot of my time, and there have been some, ahem, setbacks in the process. I'm going to post the updates in a few entries.

Let me start with the beginning of September. Remember, my doctor was resistant to a chest port tunnel line, as he told me things would be temporary, as in lasting one week. My mom came to help out, thinking this would be one horrible week. Just one.

 Here's the gratuitous picture of all six kidneys together. :)

 And here is a pre sugery picture, when things were seemingly smooth.

The tunnel line surgery was a little unusual. It turned out that I just wouldn't fall asleep on the surgery table, so they had to keep giving me different kinds of drugs to knock me out.  They gave me four times the dosage of Demerol it usually takes someone for my size to go out, and at one point I heard them ask for Benadryl (it multiplies the impact of narcotics-many drug addicts ask for a cocktail of both in the ER). So because of the high dosage I was on, it took me about 24 hours to be able to function on my own.  As I mentioned, my mother was visiting to take care of me and it was a good thing she did. Because about five hours after I came home, I started vomiting and never stopped.  ALL NIGHT LONG.

Matthew and Mom rushed me to the hospital because my chest port started bleeding, which they told us was a reason for the ER. The OU ER was totally full, so they suggested heading a half hour north to Edmond, which also ended up being totally full on a Monday night. So we then headed to an outpost ER in Edmond and not one person was there. My drugged up mind remembers the nurses playing poker when we walked in... that can't have been real.

They treated me with IV fluids while I kept throwing up the nothing in my stomach. I was literally telling her my med list while I was vomiting. Fortunately the chest port stopped bleeding, and they sent us home with anti nausea medicines (one of which was a suppository. I stopped throwing up before needing to use those.)

It turned out I had a C. Diff infection.  C. Diff is caused by overexposure to antibiotics. I have had so many infections that it led to another infection in my intestines. Hence the vomiting and diarrhea.

YAY!!

But there I was, chest port in place, ready to start chemo and plasmapheresis to save Apollo. Easy right? 

No. Not easy at all.

Oh it's ON!

Hello Friends and Family! Ahead is a slightly more frustrated post than usual. You know, like I used to post when things were really rough. I sense there might be a few more of these to come.

I have needed to update on what has been going on with my health lately, and I've been waiting to get more solid information, but I don't really have anything solid yet.

Essentially, I am going through a mild rejection of Apollo, Matthew's kidney, since April. The way the doctors have been treating it has been increasing my immunosuppressants and keeping an eye on my labs. I've had two kidney biopsies, and I've been hospitalized four times since April. The doctors in Iowa have been communicating with my local doctor because they are apparently surprised it's happening. My doctor used the phrase "acute rejection phenomenon" to describe it. Being a phenomenon sounds cool, but when it's a medical condition...not so much.

Soliris has been protecting my kidney a great deal. They said if I wasn't taking it I would be in much worse shape. But my creatinine keeps creeping up and down. Last week it was 1.6 (normal is .8-1.2), and my doctor told me that all the professionals agreed that the next step is to get the donor specific antibodies I have formed out of my blood. So the only way to get rid of them is with plasmapheresis. So you all know what that means: ANOTHER CHEST TUBE

So the plan was to get a chest port in my neck, like the good old days, and do some plasma exchange. It's not fun, mostly because it is incredibly time consuming like dialysis. I would be attached to a machine for about four hours and sometimes get itchy and need Benadryl (remember my overdose?  That happened during plasma exchange). I was hoping to get this going as soon as possible so I don't have a chest tube for later when I am playing Lady Macbeth.

BUT...

The doctors are nervous to do plasma exchange on me because of all the infections I have been getting lately.  Every two weeks is another infection, and they seem to be getting worse and worse since my original rejection episode in April. This last weekend I was at the Columbus, Ohio aHUS meetup for Global Genes and wasn't quite feeling myself throughout the evening. I gave my speech and had a few glasses of wine with some other ladies. Then suddenly once I got to my room and took my pinup dress off, my lower abdomen was in screaming pain. It was dull and covered my entire intestinal area, so I was pretty sure it wasn't appendicitis. But I thought I would try to sleep it off. An hour later I was doubled over in so much pain I couldn't think straight, so I called Matthew. He obviously couldn't help from Oklahoma, so he just listened to me moan (freaking out) for a half hour and advised me to take a nausea pill. After several trips to the bathroom every hour on the hour, I figured I had food poisoning and thought I might rest in the morning instead of attending the workshop.

(This was me four hours before the stomach madness started. At this point I felt shaky, but that's not unusual.)

The lovely two Global Genes ladies running the Meetup advised me to go to the ER after consulting the doctor that was attending the workshop. Megan Russo, my mentee in aHUS (although she is really MY mentor after this weekend), took me to the Ohio State University Hospital and sat with me there all day.

Now I have been sick with an infection just about every two weeks since they increased my immunosuppressants in April. Two of those infections have led to hospitalizations.  I'm tired of that.

Tonight I told my doctor I am ready to go big or go home.  I'm tired of this 50% treating the problem.  I don't care about the infections because they are all just byproducts of a suppressed immune system. I want to treat the donor specific antibodies that are attacking Apollo now, not later.  Let's do it, this isn't my first rodeo!

But here's the problem, says my doctor, "Every time I turn around you are getting an infection. If we suppress you more, it could kill you."

Ok...point taken.

So he tells me to come see him in the morning and we can discuss it further. Then he adds, "That is, unless you have an audition or something. I mean, I wouldn't want to get in the way of your precious career."

5..4..3..2....

EXCUSE ME???!!! OH I'm sorry!  Does it upset you I desire a career?  Am I supposed to sit in bed all day like a sap waiting to die?  Or is it too much for me to ask to have a life to live? You think I'm a pain in the ass for wanting to move on from 15 years of this??  Just wait, you haven't seen anything yet...

Now I can't recall exactly what I said, but I'm sure it wasn't anything like that. But if I had been on a higher dosage of steroids, oh boy.

So anyway, :) After a little bit of back pedaling, we agreed that I'm seeing him tomorrow morning and I'm going to try to convince him to make me sicker so I can eventually get well.  That's my master plan. It may not work, but I'm going to try my hardest. And the reason for that is because I'm more interested in being sicker for a little while than slowly losing this kidney.

But he really did get my Italian temper going...

Head above water

I was going though old pictures, and I came across this candid Matthew took of me three years ago when we weren't sure how I would get through aHUS and kidney failure. I see this picture now and I'm so glad we took so many pictures of me at the most difficult times.

This was me at my lowest. I'm bruised, tubed, and underweight, but smiling, enjoying life, and surviving. My advocacy speech is about this very picture, and helping other people find their survival tactics. I'm not perfect by any means, but I've been through a lot. I'm happy to have survived, and I regret nothing about the tactics I had that got me to this point today. I'm stubborn, bold, and I tell the truth even if it's off-putting or makes people uncomfortable. I'm an optimist, but I observe and critique everything. I always ask myself if I am getting everything I want from experiences so that I can challenge myself to drink every drop of life from each situation. There were many points in my life I wasn't sure how much I would get to do with my time left. This picture is one of those points.

 

Discomfort is a sign that you are being exposed to something from which you can learn. I struggle but truly enjoy being uncomfortable emotionally. After all, it's better than not getting to feel anything at all. Because of what I have been through I see and experience the world in a different way, and this can be really confusing to others. Documenting my life with pictures helps because I can go back and look at them to remember the hardest times.

 

There are, even today, people (new, very surprising people) that want to stop me from being ME. I find it hard to believe that I still need to defend my survival strategies, but that is why I give the speeches I give. I might get down for a few days pondering if the words spoken behind my back are true. Am I really a bad influence? Are my actions really so outlandish that a small amount of people who don't know me very well absolutely want to silence me and put me down? And is all of the push back worth it for me to express myself truthfully?

Then my head comes above the surface of doubt and I remember that every day I wake up and do my best. I simply do what I think is the best I can do for myself and others. I love advocating so much, and I will never stop doing it. And I can change the word, advocating, in that last statement to a multitude of other things:  Teaching, Public Speaking, Blogging, Intimacy Coaching, Directing, Performing, Modeling, Boudoir, Pin-up, Having Fun, Living In The Moment, etc...It doesn't matter. I have put my life on the internet, so I get it that people will scrutinize and sometimes bully me. I chose all of this. But for every person trying to stop me, there are ten people who support me for who I am. It's all part of being someone who pushes the envelope. 

 

I'm just someone who is happy to be here, and I simply want to have my little impact on the world while I am on it just like everyone else. If one door closes for me, I have a hundred other doors to walk through. Opportunities are truly everywhere, even if I have to build the door myself and walk through it. 

 

And I have a hell of a lot of experience building those new doors. :)

 

 

 

 

Pittsburgh and NEW BOUDOIR pics at last!

Lots of exciting things happening!

First of all, I traveled to Pittsburgh for an aHUS Meetup to speak as the Patient Advocate on Friday night.  It was the largest meeting I have gone to yet. There were enough adult patients that we could all sit in a room without families and just talk about our situation. It was my first time doing this and couldn't have been more successful.  These people could finally vent without their families and caretakers around. So much pent up emotion. But they are so strong.  Some of their struggles were completely overwhelming. I loved this part of the meeting.

I couldn't leave on Saturday because there wasn't a flight that left late enough to get me out and not miss the most important part of the meeting.  So on Saturday I had planned to hang out with the aHUS friends at the meeting.  But unfortunately many people left, and the others made other plans.:(

Not to worry, I crazily met some amazing people in the lobby having a birthday party for their friend.  They invited me to join them and of course, I said yes. One of my favorite things is meeting new people in a new city. There are so many opportunities all around us! If I had been too scared to walk over to this group of people, I would have had such a mediocre and lonely Saturday. But these friends were amazing, and are ones I plan on keeping if I can.

Overall, the trip was fantastic and inspiring. And my new life motto of accepting opportunities when they come has really changed my life for the better.  I live a more exciting and fulfilling life, and I meet so many amazing people along the way.

I have been doing quite a bit of modeling lately.  I haven't posted the pictures because many of them are still being edited. but this is my latest shoot that came with my application to be a Confidence Ambassador for Adoralee Photography in Norman, OK. It really sounds like it would be a dream come true for me if I got it, since all the duties described are things I already do, like convincing other women they are beautiful and building confidence in others.  Also, periodic photoshoots are part of the job, along with traveling to conferences (um..I am an expert at that now :)  )

So here is the unveiling of some of the pictures from my new shoot with Adoralee.  I hope you like them! This is my "experiencing a transplanted kidney rejection on steroids" shoot. If you look closely, you will notice there are bruises on me.  All of these pictures are completely unedited.  This is my body with NO photoshop or editing, just the way I like it. :)

I'm a pageant girl!

This last weekend, I was selected as a finalist to perform in the Stray Kat 500 car show's Miss Kitty Pinup Pageant.  It was my first time doing anything like this, and I am so glad I was able to do it. There were so many beautiful people I was able to meet, and each one had just as much inner beauty that made them shine.

I was contestant number five, Sina Star.  

I absolutely love the pinup culture. Look at all of these beautiful women! Each one was friendly and supportive too! I felt like a celebrity all weekend, because everywhere you turned there were photographers shooting pictures of you.

These last two are courtesy of KaraBelle Photography!  Aren't they pretty? :)


Many of the contestants were already friends, and some had participated in the pageant last year, but that never made me feel out of place.  They welcomed me immediately.

This is a picture of the Friday night pool party.

In the end, I won the the title of Miss Kitty Pick of the Litter Wild Card. It was a title awarded by the pageant staff, essentially. I like to say it is sort of similar to winning "Miss Congeniality" because of that. It was a great experience, and I had an absolute blast.

Health Update:

My kidney, Apollo (for those of you who are new to this site, Apollo is my husband's transplanted kidney), is hanging in there.  My creatinine is at 1.5 as of Wednesday. My doctor says I am "stable" but he isn't comfortable yet. The issue is that the antibodies I formed to attack Apollo are still in my body, even though my creatinine is stable. I'm immuno suppressed enough that I'm not technically in danger at the moment, but my doctor is weighing the options of what to do. He has steadily decreased my steroids to 15 mg now, but that makes him uncomfortable I can tell. Normally, I would get a central line in my neck again and do plasma exchange to get rid of the antibodies, but he doesn't want to be so aggressive while I'm stable.  But if the creatinine goes up (when, not if), we will most likely have to treat it with more force. I'm not willing to lose this kidney so fast, so I will do what I can to protect him.

But at the moment, I am stable and feeling just fine.

Also, I have been traveling around the country for atypical HUS Meetups, and giving speeches to other patients about my experience. I technically welcome them to the club, but I have an advocacy message that is part of my speech. I show some of my infusion pictures.  The message is:

Don't let anyone judge how you choose to survive your chronic illness. Do what you need to feed your soul. People may try to stop you by crushing your self esteem and not being understanding of what you have gone through. They don't matter, because they don't get it. Most of those people haven't been through something that tossed their mortality around. You get to do what you need to do to survive, and no one gets to say you are wrong.

Take it from me, this message is personal. I talk about my experiences in this blog, and around Oklahoma. All the judgement that comes so naturally to people from this area can be stifling.  Opportunities like this pageant or advocacy meetups remind me that I'm not crazy, and that I'm doing the right thing. Using pinup as part of my advocacy is a no-brainer. If I can draw awareness with my pictures, how can anyone say it's wrong? 

People that don't get it, that's who.

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.