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

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!


  1. Wow, that is a Journey! You keep on pushing forward.

  2. Wow, that is a Journey! You keep on pushing forward.