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:


~ 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

Monday, January 21, 2013

Oh Goody!

So I got an estimation of benefits from my insurance company about the time I was in Chicago in December and needed a treatment in a clinic.  I wasn't fully trained and didn't take my machine with me since it was just a long weekend.  ONE TREATMENT.  Absolutely necessary.

Here is the total. $3519.00.  Total I may owe provider.

There was paperwork for WEEKS about this trip.  Because of my f$&*ing HMO, even medically necessary treatments are a no go.   I'm sure a trip to the emergency room due to excess fluid would have made them sooo happy.


Friday, January 18, 2013


Water.  Water is all I think about.  I need it so bad.  I see people leaving their beautiful water with ice in restaurants.  They aren't drinking it.  They are mostly drinking soft drinks.  Things that don't quench thirst and add sodium and in most cases chemicals to their bodies, and empty calories to their diets.  I see people who clearly don't need the extra calories drinking Coke or Pepsi, and people who think drinking diet soft drinks will fill them up, but they are adding caffeine and sodium which makes them thirstier.  Diet coke doesn't make you lose weight, it makes you gain weight in the long run.

Water, though.  It's so wonderful.  I can't drink it now.  I am allowed 32 ounces of fluid a day.  Think about that.  That means if I eat soup, use a glass of water to take pills, drink a small coffee in the morning, and eat any kind of fruit or vegetables that are juicy like cucumbers, apples, oranges, or tomatoes, I don't get to drink water AT ALL in a day.  So I have to limit my intake of fruit and vegetables, limit foods like soups (which are high in sodium which make you thirsty anyway), limit things like popsicles and jello, or snacky things like popcorn or chips which generally contain salt that will make me want to drink more.

I get so jealous when I see people drinking anything.  Last weekend, I had a bunch of drinks.  I drank three (or four...or five) rum and cokes in one long evening of drinking at a party.  I don't pee much anymore, because my kidney can't do its job.  I actually can't pee more than a few trickles here and there.  Sorry if that's gross to talk about but I am pretty sure if you are still reading this entry, you are a bit desensitized by now.  I get rid of fluid with my dialysis machine.  One of its functions is to suck fluid off of me while it is filtering my blood.  So by the end of that night of four (or more) drinks, I hadn't peed AT ALL.  If you can imagine drinking alcohol without having to pee, you would gain all that liquid into your cells.  By the end of the night, I had more than two liters of fluid on my body, slushing around my tissues.

What happens then is your blood pressure goes up.  This can be potentially dangerous, of course, if I don't get the water off.  And even though I have all this water in my tissues, I am thirsty.  The more water I have on me, the more thirsty I get.  Because I am not getting the water to run through me and flushing my system like all of you, taking all the toxins with it.  Alcohol still dehydrates me.  But the water goes in places that are unhelpful. making my body want more water.  Two liters of water weigh 4.4 pounds.  So gaining five pounds in a few hours is enough to drive a woman crazy ("This skirt fit me perfectly when I got dressed tonight, I swear!")  Yes, I do get to lose five pounds in a few hours as well, which is awesome.  But I use the scale to tell me how much water to pull when I set the machine, as if I wasn't obsessed with my weight already.  Sometimes I push it to the limit and try to remove as much as possible so that I can be ahead on the next treatment.  But it doesn't work that way.  If I am dry I have low blood pressure and I get lightheaded.  My pulse is raised and I get really weak, with muscle cramps.  Not just like soreness, I mean cramps.  Like charlie horses EVERYWHERE.  It's awful.  And bananas don't help that much this time.

I get obsessed with ice.  I am an ice snob.  Since I don't get to have much, I will go places where I know they serve that clear ice instead of cloudy ice.  Many restaurants have clear ice, but some don't.  I need to drink it from a glass I can see through, preferably a clear glass cup.  McDonalds has clear ice, so does Wendy's and IHOP surprisingly.  Clear ice is made from a machine that pours water over freezing cold water containers constantly.  It has to moving constantly or you will get air particles in it which causes it to look cloudy.  That's why most refrigerators have cloudy ice.  I have been told that if you boil water, let it cool, then boil it again, then freeze it it will be clear, but I haven't tried this yet.  There is just nothing like a cool glass of ice water with clear ice cubes floating at the top of it.  And people just push it aside and forget about it most times.  What. A. Travesty.

The first thing I am going to do when I get this transplant is drink water all day.  I am going to make this kidney drown in water.  Healthy kidneys love water, they love it.  You can make your levels look awesome by drinking more water if you don't have kidney disease.

Do enjoy your fluids folks.  And have a tall glass of water on me.  You don't realize how wonderful the simple things are until you can't have them.  Some people in this world can't drink water for other horrible reasons like they don't have clean water available, so at least I am not in that situation.  I will accept my 32 ounces and enjoy it with every slow sip I get.


Thursday, January 17, 2013

This is Atypical Hemolytic Uremic Syndrome

We were getting ready for Christmas but we knew we would probably be in the hospital the following day.  So we went out for dinner and got ourselves ready.  But we had no idea the news we would receive during this hospital stay.

On December 21st, 2011 I was admitted into the hospital for severe anemia and what my doctors thought might be another transplant rejection.  It looked eerily similar to what happened to me a few years back when I was working at OCU, so we thought we knew what to expect.  But things seemed worse this time.  Why was I so anemic?  Why was I bruising so badly?  Where was all this coming from, because it isn't really symptomatic of a regular kidney transplant rejection.

The details are foggy because my memory comes and goes, but I remember the doctor coming in and saying they were doing a lot of tests to try to find out why my hemoglobin was so low consistently.  The trick is, kidney patients have low hemoglobin already, but mine would drop severely so quickly that there didn't seem to be any response to drugs.  That's when the intern suggested testing me for TTP, a rare disease affecting the blood.  She had read it in a textbook and thought I was showing symptoms of it.  In the meantime they began to treat me with plasma exchanges.  This is when they take plasma out of my blood and replace it with ten bags of donor plasma.  Like dialysis, it takes about three to four hours attached to a machine.  It feels pretty awful too. I had about seven days of this when they came in and told me I didn't have TTP, the rare disease.  In fact, they thought I had something even more rare.  Atypical Hemolytic Uremic Syndrome, they called it.  Atypical because I don't fit the average mold of people who get it, and on top of that I am exhibiting symptoms in a strange way.  AND I am an adult.  All things that make it atypically atypical.  Figures.

We spent the next two days wondering if I was going to die.  The doctors didn't really tell us there was a cure for this disease, and plasma exchanges didn't seem to be helping much.  It was a strange feeling.  On one occasion, I was getting plasma exchange when I started itching.  It happens sometimes when you are receiving plasma and it isn't a really big deal.  They just give you some IV Benadryl and move on.  So I asked the nurse for some.  She asked me how much I normally take.  I said, "I don't know 50 milligrams?" because that is how much I take in pill form at home by mouth.  The nurse came back with the Benadryl and shot it quickly into my arm IV.  I felt it singe my arm veins (that stuff burns like hell when it goes in undiluted).  And then moments later my head felt as if I received the heaviest narcotic shot of my life.  It was an instant high, so strong it almost made me vomit.  I looked at Matthew and said, "that wasn't Benadryl", thinking maybe she gave me a painkiller instead.  But then moments later I realized that something was wrong.

There were waves of heat running through my veins, and my heart rate jumped up like crazy.  I started thrashing in the bed and said, "SOMETHING'S WRONG!  STOP THE MACHINE!"  The plasma exchange nurse stopped it and checked my blood pressure and heart rate which both shot up sky high.  She called the nurse and some kind of code.  Seven doctors came rushing in to help and asked questions that I couldn't answer because I didn't know what was happening.  I couldn't make eye contact with anyone because I lost control of my muscles.  I was writhing in my bed in way later described as slow motion bike riding and running my hands along my torso (like my clown does sometimes, strangely).  This was absolutely terrifying to me because I thought I was dying right there.  I glanced at Matthew and thought, "This is the last time I am going to look at you!!"

I heard the doctor asking the nurse questions like, "How much Benadryl did you give her?" "50 mg!" "I never give anyone 50 mg of Benadryl, that's too much! She is really small!"

The head doctor got close to me and said, "I am so sorry this happened, but you got too much Benadryl  and it has to leave your system now.  I didn't OK that.  There is nothing we can do, you just have to let it die down.  Try to relax, you are going to be OK."  Now, I was just overdosed by the head RN on the floor.  The last thing I was going to do was trust anyone in that hospital.  Especially when I couldn't see his face to determine if he was just trying to get my to die quietly.  So after the doctors left, I stayed in this heightened state of panic for the next few hours.  I didn't fully get my muscle coordination back until the next day, about 24 hours later.  And I had a really hard time sleeping that night, thinking I might die at any moment.

What I didn't know was that this event would trigger an anxiety disorder that would last the rest of the year, and possibly the rest of my life.  I distrust anyone giving me an IV now, and I watch people like a hawk.  I question every drug in a syringe coming near me, and things like air in my IV tubes will send me into a panic.  I even started having panic attacks outside of hospitals, like when I saw spiders or bugs, or when I was in the jeep with Matthew driving.  Everything that caused a little bit of stress became absolutely unmanageable.  I was diagnosed with post traumatic stress disorder and saw a psychologist for six months for it and was put on medication.  It is a lot better now, but occasionally the anxiety comes back and I panic when things go wrong.

This wasn't the first time I was given the wrong medication dosage at OU Medical Center.  Three times I have been in absolute danger.  I have come to hate going there, and after my transplant I might have to transfer do a different place, just to calm my nerves.  I feel that every time I am there is one step closer to being killed accidentally (maybe more than one step).  This is no way for a chronically ill person to feel in a hospital.

Anyway, by the end of that hospital stay we learned that the FDA had recently approved a drug called  Soliris to treat aHUS.  It wasn't a cure, but it would keep the disease suppressed so that the kidney wouldn't be affected.  My kidney had been REALLY affected by the disease at this point, so the drug did suppress the aHUS after a few months, but the kidney damage was just too far gone for it to come back.  And just so everyone knows, kidneys do not come back once they are damaged.  You can stop the damage from getting worse sometimes, but once it starts, you can never get the kidney to come back to fully healthy.  And kidney disease is a tricky thing.  Most people don't even know they have kidney problems until it is too late.  1 in 9 adults have kidney damage going into failure.  1 in 9 !!  That statistic is terrifying.  (Of course I knew this statistic when I was 25 getting a transplant.  With all the adult onset diabetes from obesity since, this statistic may have increased since.)

Let me take a minute to tell you about aHUS.  I have a genetic mutation in my DNA.  What happens is that my body's immune system thinks it is being attacked at all times, and my blood forms these microscopic blood clots because it thinks it is helping.  But these blood clots are like teeny gravel in my blood, and it causes the red blood cells to pop when they run along the clots.  When the red blood cells pop, my hemoglobin goes down dramatically and quickly.  It is why I have been so light headed for so long.  I have been missing half of my blood.  On top of that the kidneys are the ones that make the chemical that stimulates more red blood cell formation, and my kidneys don't make that chemical any more.  So my doctor has been trying to figure out where my blood has been going for years.  It's been disappearing in my own bloodstream due to the aHUS.

The kidneys are affected because the microscopic blood clots clog them up and damage them.  So it appears as if I am rejecting over and over, but truly it has been the aHUS all along.  I am very lucky however, they said that without Soliris,  about 50 percent of people who get this disease don't live past a year.  I had the disease triggered for AT LEAST three years before the Soliris was administered.  Soliris is the worlds most expensive drug according to Forbes Magazine.  It costs between 500,000 and 750,000 dollars a year.  Before October of 2011, insurance companies wouldn't cover it at all.  So two months before I was diagnosed, it was FDA approved and I had it in my IV in December.  Like I said, I consider myself very lucky.

aHUS causes other problems, like gastrointestinal issues such as diarrhea and nausea (which I had for years-one of the reasons I lost so much weight along with the kidney failure), migraines (which I had since I was 20 years old and they stopped after Soliris came into my life), nose bleeds, (which were getting out of control!), bruising (I was starting to look like a rape victim after my pole dancing classes.

 Poor Matthew would get looks when we went in public with me looking like this:

The thigh bruise came from me hugging someone and wrapping my leg around them, the nose bleed was around for about three years, and the black eye came from opening a car door and having it brush my face.  It was humilitating.  Bruises stay for at least a month.  That black eye stayed for two.  I still have a permanent discoloration on my right eye because of it.  All of this is aHUS.  And I was thankful to finally have a diagnosis.

After a while I started to look like a super villain from a comic book which wasn't so bad:

So the verdict is if we can replace my kidney and instantly give me Soliris from the beginning, I will be "healthy" again.  I will be like a regular kidney transplant patient, except I will have to get infusions of Soliris every two weeks for the rest of my life.  Easy peasy.  Small price to pay in comparison to dialysis and kidney failure.  And I am so ready to move on, I can't stand it!  What a journey!

More tests..

Yesterday, we found out that Matthew has to do a few more tests.  He had a couple of red flags in his test results that are making them have to look a little closer.  His family has a long history of diabetes that they want to make sure isn't genetic, because Matthew's creatinine clearance came back a little off.  He is filtering a little TOO well.  I know, that sounds like a good thing, right?  He's filtering too well, so if you take one kidney he will be fine, right?  Well, not really.  His level could indicate that he is predisposed to diabetes.  They need to do a glucose test to make sure.  If he passes that, he can be cleared.  They also want to recheck his blood pressure with a 24 hour monitor.  His blood pressure is usually perfect, even better than perfect.  But he was a little nervous in the office and it went up a little.  It happens to me all the time.  White coat syndrome, they call it.  So they are just retesting those things before they clear him.  We didn't hear about the specific tissue typing, but they did say we could proceed after those tests cleared him, so I am slightly assuming we passed.  We will find out today for sure.

In the meantime, we are dialyzing and trying to prepare for Matthew to take off work for a few weeks.  It is complicated.  We don't want to have to wait until May to transplant, but it would be best for his work.  4 months doesn't sound like a lot to wait, I know.  We have waited for over a year to get to this point, right?  Well, every day on dialysis is a risk.  My chest port could get infected any day I use it.  In fact, It is already looking a little kinked from all the clamping.  I may have to get it replaced before the transplant even happens.  This is why my doctor suggested the fistula (AND I AM NOT GETTING A FISTULA).

I am seeing my nephrologist today and will update him on all the Iowa stuff.  To be honest, I am feeling a lot better than I have in years.  Yesterday I went grocery shopping on my own.  And I carried two loads of heavy groceries up from my car to my apartment by myself.  It can't remember the last time I did that!

I have to take a moment and say thank you to those of you who have donated to our cause.  Most of the people who have sent us money are people we either don't know, people we met once, or people we haven't seen in a long, long time (we're talking 10 years for some!).  It means so much to us.  We are saving the money to help chip away at the cost of the transplant itself at this point, which will be around 6000 dollars if we include travel and lodging to and from Iowa (maybe more-depending on how long we have to stay).  Travel, room and board is not covered by insurance at all.  Also thank you Blaz Bush for making me start this blog.    I love you!

So happy Thursday everyone!  Enjoy your kidneys today, if you have ones that work!

Thursday, January 10, 2013


My blood didn't attack Matthew's!!  One more hoop to jump through before we know for sure he can be my donor!  On Monday the committee meets to discuss our case, and on Wednesday we should get a call about donor specific antibodies. 

So close...

Also, I gained five pounds.  I suppose it's a good thing.  But I have to be honest, I really don't want to be overweight again.  It's going to make pole dancing really hard when I get back to it.

Wednesday, January 9, 2013

Iowa Stubborn

We had a full day at the University of Iowa.

Matthew went through his donor evaluation which consisted of blood labs, a chest x-ray, a CT scan, a 24 hour urine test, an EKG, a psychologist evaluation, a kidney doctor evaluation, a surgeon evaluation, and being asked about 20 times if he realized what he was about to do.  Of course, they had me leave the room for a few appointments to make sure I'm not coercing him in any way.

All I had to do was meet with my nephrologist and transplant surgeon, and then I had to get a few labs drawn.  It was strange watching Matthew go through all the stuff I usually do.  I forgot that part of transplantation.  You feel so helpless as the recipient (and a little guilty).  I mean, I am used to being poked and prodded, but I hate that someone healthy has to do it because of me.  He also had to fast for about 16 hours, and that is the worst.

But we find out tomorrow if the crossmatch is negative.  This would mean that my cells don't attack his when they put them together in a petree dish.  In a week we find out about the antibodies.  Hopefully we get a good phone call tomorrow.

Can I just say that the team in Iowa is amazing?  They are all so helpful and enthusiastic.  One of my coordinators said the phrase, "I just love my job!"  This is such a confirmation that waiting for Iowa was the right choice.

Monday, January 7, 2013

Embolism Scare

Matthew and I were finishing my dialysis today like we usually do.  We have a pretty good routine, but we are at my Nonna's house so things aren't exactly laid out as usual.  After we rinsed back my blood, I forgot to clamp my venous line.  I was always told that if I forgot to clamp it, blood would spurt out from my port and it would be a mess.  But instead of that, air sucked into my tube.  I drew back on the syringe to get it out, but I had no idea how much air got into my blood stream.  So we had to call 911 in case of an air embolism.

The ambulance came with a firetruck and eight strapping men came to get me and bring me into the ambulance.  After two hours in the ER, I had a chest X-ray and was cleared.  They said if air got into my system, it had broken up and wasn't dangerous anymore.

I had a bit of a panic attack when I thought air had gotten inside.  Air embolisms can give you a stroke in seconds.  I knew that I wasn't dying because too much time had passed, but I think the thought of how close I came to having something severe happen was staggering.

At the end of the day, I am kind of upset.  I don't want to "nearly" die anymore.  No more close calls.  I know this sounds a little arrogant, but whatever life lesson I need to learn about appreciating my life has already been learned.  I totally appreciate my life!  For real!  Universe, please stop reminding me how fragile life is.  I know it is.  Can't I  move on to the next lesson now?  Because the near death stuff is getting a little...well, tedious.

On a lighter note, we are leaving for IOWA today!!!  We get to do an entire day of donor testing for Matthew tomorrow.  The transplant team was able to shove everything into one loooong day.  It is great news because we should know more about scheduling things.  So I will update as things happen. 

If Matthew's kidney doesn't work for me, we will probably participate in the kidney donor swap program.  This means that Matthew's kidney might go to someone else whose partner's kidney might go to me.  It's like a wife swap but with kidneys.  Hope that clears it up. :)

What an amazing night!

A year ago last night, Matthew and I were sitting on the couch playing a video game when we received a phone call from the Chicago area.  It was a friend of ours, John Tovar from the Society of American Fight Directors.  The SAFD is a society my husband belongs to as a Fight Director and Stage Combat Teacher, and they do many regional workshops that are amazingly fun to go to.  He is very involved, but I wasn't able to pursue my own advancement in the society because of my health conditions throughout the years.  But when we answered this phone call, we had no idea what kind of society it truly was.  John was calling to tell us that the Winter Wonderland Workshop in Chicago was donating their annual raffle money to Matthew and I to help us with our medical bills.

After he told us the news, we heard a roar of cheering from the background.  It was so overwhelming, we were both crying.  This professional society had made us feel so special.  The money was an amazing help and allowed us to move closer to my doctors for this year, but the real gift was reminding us we were among friends even if we were far away and isolated.  Amazing.

Last night, we were able to personally thank the society at the Winter Wonderland Workshop this year.  The raffle was collecting for a fellow society member in need, and we were hoping to explain in person what their money was helping to do.  Being chronically ill is isolating for a family.  We couldn't afford to eat good meals, go see movies, or even get drinks with friends.  The copays were wiping our bank accounts and crippling us.  Also, being sick enough to take you out of your job really takes a toll on your psyche.  You truly feel as if the whole world is leaving you behind.  A phone call or even a text or facebook post means more than you can believe.

So here I was standing in front of a room full of very influential Stage Combat teachers.  Many of these are people that my 20 year old self would have been star-struck to even be in the same room with.  But because I have this unlucky disease, I am able to meet and have amazing relationships with them, while helping another sick and unlucky person feel a little bit more secure and loved.  I was just so overwhelmed.   What a fantastic evening!

Tuesday, January 1, 2013

It's Here!

Today is a very important day for me!  I have been waiting for this day for quite some time.

Today is the first day my insurance switches from an HMO to a PPO.  And now.....I can finally START the transplant red tape!!!!!