The key to resiliency

I recently read an article in a dialysis magazine that really struck me.  It talks about a psychiatry professor at Yale who studies resiliency in people through different situations.  He discovered that people that recovered most effectively after significant traumas in their lives had a list of things in common.  His list really made me think about what has helped me get through my toughest times, so I thought I would share it with you and elaborate in my opinion.  If these things are missing in your life, think about how to add them and I assure you it will change your outlook when you know what hits the fan.

1.  Social support- I would say that this is really essential.  When you feel alone, you feel like the disease takes over those friendships.  Ask for help.  Tell your friends what you need specifically.  If you are lonely, tell them so.  A good friend will come visit or call the first chance they get.  A best friend won't need you to ask.

2. Optimism- This is the MOST important one to me.  Without this, everything is horrible.  I like to imagine that things aren't as bad as they seem.  Try focusing on the good things you get out of your situation.  For example, I am always saying that my disease has kept me in touch with friends I haven't seen in ages that would have totally forgotten me if I hadn't gotten sick.  Total silver lining.

3. Flexibility- I must admit I am weaker on this one at times.  I fight everything my doctors say if I don't agree or it isn't what I believe I need.  But at the end of the day, your life is GOING to change in a major way.  The more you make yourself adaptable, the easier the transition will be.

4. Faith- I believe there are many kinds of faith.  For some people this one is number one on the list.  For me it applies more as a faith in my doctors or faith in my own ability to do what needs to be done.  I believe in myself, which to me is very important.  At the end of the day, I feel I am the one that needs to do the work to stay alive.  But if you believe it is out of your hands and in someone else's, more power to you.

5. Core Value System- What do you look forward to doing when you get healthy?  What kind of person do you want to be?  For me, this involves how I choose to lie my life, and finding value in what I still am able to do.

6. Positive Role Models- Find others that inspire you.  My grandfather was the biggest for me.  He suffered from disease for years before he died and loved his family with more passion than I have seen.  He still influences me.

7. Physical Fitness- Find something your body can do, and get good at it.  It really helps to feel you can control your body in a positive way when there are so many things out of your control.  For me this is pole dancing, singing, theatre, and yes - Pinup photo shoots!

8. Cognitive Strength- This has kept me alive over and over and over.  STUDY YOUR DISEASE.  Don't allow yourself to coast on what your doctors say.  THEY DON'T TELL YOU EVERYTHING.  Sometimes, they don't tell you much.  DEMAND TO KNOW!  I would have died at least four times without this one.  My therapy is usually an idea I bring up to my doctor.  We figure it out together.  If I hadn't researched Iowa, I wouldn't be getting a transplant there.  I would be forced to do it in Oklahoma where they don't know my disease and are pretty unsure it will succeed.  I deserved better than that, and so does everyone.

9. Facing Fears- This was huge for me too.  I was overdosed by a nurse in the hospital once and I developed a huge anxiety around IVs as well as the drug she administered.  I had to go through therapy to get over this.  But I forced myself back to that hospital and back in that same vulnerable situation so that could face that nurse again and learn she wasn't going to kill me.  Having a chronic illness contains so many fears you need to surpass, they are impossible to count.

10. Finding Meaning in Struggles- What is the point of all this?  What am I getting out of all this?  What do I get when I come out on the other side of it all?  There is always some meaning.  It's not always a "God's Plan" kind of meaning either.  What did you actually learn from it?  And how can you help others in your same position when you are past it?  Don't lose sight of that meaning.

These ten things are so important to making it through.  And they don't just apply to illness struggles.  Losing a loved one or even events like divorces or job loss is similar too.  I lost a job I loved once, and it was actually harder than getting sick.  I wasn't prepared because I didn't think about what I needed to get past it.  All I could do was wallow in my anger at the people responsible.  Just like illness, blame doesn't really help.  Sure punch a pillow or two, but you need to move on and find a way to be productive.  Look to the future and get excited about the possibilities.  There are so many things to get excited about in this life if you focus on the good days.

(Reference book: Resilience: The Science of Mastering Life's Greatest Challenges-Charney/Southwick)

Dialy-stress

Last night was rough.  Matthew and I did a treatment of dialysis, and everything was going fine.  We were just finishing up rinsing my blood back from the machine with saline when suddenly my heart started beating like crazy.  It felt absolutely insane and out of control.  It was like my hear thought I was sprinting but I was lying down.  My heart rate went from 80 to 140 in about five seconds, and my blood pressure also went from 128/93 to 175/115.

We sort of waited it out, holding the phone close just in case we needed to call 911.  I have never had heart issues before, so I was terrified I was having a heart attack.  But a couple minutes later my heart slowly started slowing down, and my blood pressure went down just enough for us to think it passed.  

We had studied every single situation that could happen in our training, but nothing like this ever came up.  We are afraid that now something could be wrong with my heart.  

As if that wasn't enough, after we finished up, my cat was yowling from the other room and pacing around the apartment.  When I watched her I noticed she was squatting over her litter box and not peeing.  We quickly ran to the computer to look up cat symptoms.  Everything we read said possible impacted bladder.  Emergency vet.  

We took the Baby Kitty to the vet, already shaken from what happened with my heart earlier.  It turned out she probably had a urinary track infection, but they kept her overnight.  She's a ten year old cat and I haven't had her go to the vet in 7 years.  She has been the only one in this house that seems to be perfectly healthy.  She's really my cat, and I would be heartbroken if anything happened to her.  We don't have kids.  Our pets are our kids.

My hero

I have to take a minute to post about my husband.  I would write about him all day if I could.

When we met the poor boy couldn't even stomach to come into doctor's offices with me, let alone hold my hand.  Sure he visited me in the hospital, but I am sure he didn't sign up for that when we met.  Since we had only been together for one healthy year before my native kidneys failed, year two was a huge deal for us.

But nearly ten years later he is brave and solid.  He has held my hand through the bloodiest procedures,  seen me through the worst steroid rages (shouting nonsensical profanity isn't the best way to spend your time with a loved one), and helped me deal with every near death experience causing post traumatic stress (when I was suffering paralyzing panic attacks after a nurse induced overdose, he would pull out my laptop and make me watch "Too Cute" on Animal Planet until I could breathe again).  Now he is my caretaker, nurse, and partner in my home hemodialysis adventure.  He helps me set up the machine (he knows all the functions and how to hook it up to the water supply and all that stuff I really don't understand), he helps me take blood, and he stays with me every day to make sure I am taken care of.  I suppose one could say that a husband was supposed to be there for "sickness and health', but I am pretty sure many men wouldn't have stuck around for some of this.  And I have NEVER heard one complaint from him about any of this.

And all sickness aside, we have so much fun together.  Hospital visits are agonizing, but we always find a way to make them entertaining.  Maybe some of that comes from our deep theatre culture.

Long story short, he's amazing.  He loves like no one I have met (not just me, everyone), and he is one of the funniest people I know.  I am so proud of the man he has become.  And he gives me the strength to be the best person I know how to be.  He's truly my hero and I am so lucky that he is in my life.

One step closer to transplant!

Great news!

Iowa told us there was nothing we could do before January 1st to move the transplant along because all of the blood work needed to be done there, but when I got in touch again to plan the January 9th visit they told me there were some test results they needed before then.

Great!

So I went to the Oklahoma Transplant Clinic and did some labs.  My coordinator Jeremiah told me he would send my whole file when the tests came back.

Also, he told me I was a much better recipient than we suspected.  My antibody percentage is only 44%.  I think this is the percentage of the population's antibodies I can't have from a transplant.  Every time I got a transfusion or a transplant or pheresis they were adding antibodies to my blood.  It limits the donation pool for me as this percentage goes up.  Since I have had upwards of 30 transfusions and plasma exchanges, we thought I was in trouble.  But it turns out I am only a 44% and I am an A+ blood type which makes me the best blood type for a recipient.

Some really good news!  Finally!!

Finally, a Blog!

A lot of people have begged me to start writing.  I simply couldn't get my head clear enough to start until now.  But when I looked through my files, I realized that I have been blogging for quite some time.  Many of the entries are scattered, and they aren't well written.  Some of them are drug induced, others are just facebook posts that I added.  But I think they show what happens to the mind when it is attached to a diseased body and fills with toxins.  The entries on this blog are unedited.

I would stay up all night because of the poison in my body.  Most nights I would numbly watch episodes of The Office a million times over and over just to turn off the nasty scared thoughts in my mind.  The anxiety comes at night and repeats haunting questions like, "Where is my life going?  What am I doing?  Are people forgetting me?  Will I ever get back to teaching?  What if I can't do theatre ever again?  Am I stuck in time while everyone gets to bound forward with their lives?"

Sick people are really either great or horrible to be around in my experience.  Either they draw attention to how awesome your life is in comparison to theirs and inspire you to suck it up and be a little more appreciative of your ability to wake up every day, or they make you feel guilty that you are healthy by reminding you how sick they are.  I have always striven to be the first kind of sick person.  I don't like to have a pity party (although I do like to party).  So I try to keep my Facebook posts positive so I can convince not only others, but maybe myself too, that everything will be ok and life is actually awesome at times.  Just really drink in those awesome times, because for me those rotten times could be right around the corner.

Matthew and I LIVE when we can.  I mean we suck the juice out of life.  We aren't ashamed of that outlook.  It makes the bad times ok somehow because we took advantage when we were able.  We got those tattoos we always wanted, we drank too much when we wanted, we told others we loved them when we wanted, we took that pole dancing class when we wanted, we made love when we wanted, and we stayed home and played computer games for days when we wanted.  We try to do things when we want to do them, and that way just in case something drastic happens we can never feel like we missed an opportunity.  And I honestly don't feel like I have.  I only feel jealous that I am missing out on the fun sometimes.

So anyway here it is, my first blog.  I have a lot of writing ahead of me!

Home at Last!

We did our first home treatment without Susie.  It went really smoothly.

The first time we transitioned into our apartment, I had a lot of anxiety.  I had a mini freakout when I thought blood was in a tube it shouldn't have been, but it turned out I was just seeing the machine from a different angle.

Our apartment has been pretty much taken over with medical supplies, and I feel bad for Matthew.  He has been so amazing coming to my training every day.  I didn't realize our cool sexy apartment would look like a hospital.  But it's only temporary.

I hid the boxes in different empty spaces around the apartment so that they wouldn't look so intrusive.  But our bedroom is not sexy anymore.  The day we get rid of this stuff will be a good day for the Campanellis house.

Supplies!!!

Dialysis supplies are in our apartment!!!  Two more weeks and we are on our own!

Maybe it's the toxins talking?

I yelled at my doctor today.  I may have even used profanity.  Let me explain.

For the past six months, my doctor has been suggesting for me to get a fistula in my arm for dialysis.  A fistula is like the port in my chest, but it stretches your arm vein into an artery so that it can handle the large blood flow of dialysis.  It is permanent.  I mean, really permanent.  And if it screws up, my arm vein is screwed up for the REST OF MY LIFE.

NO.  I am not interested.  Besides, my transplant will happen before the fistula even heals.  Why on earth would I get one?  Yes they are safer and less prone to infection than my chest tubes, but I am planning to get back to my life as a professor and actress as well as a pole performer.  People will not want to look at my fistula pumping out of my arm as I am trying to play Lady Macbeth some day (actually that might work for her).

So my doctor, who knows I don't want a fistula, mentioned to all the dialysis nurses that I didn't want one.  He told them not to even try to convince me because I am vain...nice.

So today when he suggested it again, I yelled "SHUT UP!! NO!"

...silence...

"Are you still going to try to get a transplant in Iowa?"

"Yes, they are waiting for my insurance to change to a PPO on January 1st.  Then we can start testing donors.  We feel more comfortable with them because they have done these kind of transplants and are confident it will be successful"

To that he says, "No one is confident they can do these kind of transplants.  The research isn't even documented."

I know that Iowa knows what they are doing.  They can carefully monitor my aHUS while I am there so that it stays under control.  Oklahoma can't do that.  Hell, they can barely keep me alive as it is.  Every time I go to OU Medical Center I am much closer to dying than when I am walking around anywhere else.  That place is terrifying!  The doctors are great, but the nurses have made way too many mistakes with me.  I trust Iowa.  I am an educated person, and I have done my research. 

It scares me that my own doctor doesn't feel confident I can have a successful transplant.  He thinks my next transplant might fail too.  But I will be in Iowa's hands soon, and they are the ones that need to have confidence, right?

Great, now I can't walk.

So dialysis puts me in a wheelchair as it is, but somehow I got tendonitis in both my ankles.  I can’t put weight down on them at all. 

Ironically I was wearing heels (which I usually do, of course) at Matthew’s parents’ house.  I took them off and was stirring caramel in the kitchen when my right ankle suddenly got very sore.  I thought maybe I pulled something.  When I went to bed I rubbed it, but it felt bruised.  In the morning I couldn’t put any weight on it at all.  Then two days later, my left ankle started hurting because I was favoring one foot.  The ride home was excruciating, and now I am wheelchair bound completely. 

Sometimes I wonder why the gods are throwing so much at me at the same time.  Is this funny to someone?  Because the absurdity isn’t at all lost on me.  I feel like I am in a Fletch movie.  Or some kind of absurd medical horror story.

Home Dialysis Training

So we started home hemodialysis training.  I am hoping it is easier than in-clinic, because if it isn't I don't know what I am going to do.

The machine looks like what reminds me of a Commodore 64.  It seems really primitive to be filtering my blood.  I can't believe no one has made a newer model.  But I am happy that Home Hemo is an option.  They interviewed Matthew and I to see if we were candidates.  I am glad they did, because this process isn't for everyone.  We have to be trustworthy to manage my entire dialysis process on our own after only six weeks of training.  Most of these nurses have six months of training, and then they shadow someone for a couple of weeks before being on their own.

This is how the machine works:  We attach two tubes of saline to my port going into my artery.   My blood goes out through one tube and in through the other.  Then the blood gets pumped into the machine where it travels up into a long tube filled with long fibrous tubes.  Dialysate is flowing into the tube on the outside of the fibrous tubes.  As my blood travels through the little tubes, toxins and extra fluid flows out through the teeny holes.  It's kinda like a coffee filter.  Then my clean blood gets pumped back into my body though the venous tube.  I have to sit and do this for about three hours four times a week.  It really seems time consuming.

But I think this process is a whole lot easier than the in-clinic machines.  Those things suck the life out of you.  This one can be adjusted moment to moment, so I can be gentler with my treatments.  Or more aggressive if I want to be.

Our teacher, Susie is so nice.  She is patient and really knowledgeable.  I am relieved.  She doesn't terrify me like other nurses I have had.  I forgot what it is like to trust your caretakers, it's been so long. :)

Government Moocher

I have been going through my diary entries while going through the worst of dialysis and I found this gem.  I don't recall writing it even though it was just over a month ago.  Kidney brain makes everything foggy, and my memory of the last six months to a year is paltry at best.  Nevertheless it is interesting to me that this came out at a time I was feeling so poorly.  At this time I was throwing up almost daily from starting dialysis, and I was in a wheelchair whenever I left the house.  Some people might remember the very end of this rant was posted on Facebook as a simple status.  This was the rant that came before it.

November 17th, 2012

Three times a week I spend five hours of my day sitting in a building that is full of people like me.  “Moochers” that are quite obviously the bottom class of society.  These people are not as lucky as I am.  They don’t have a husband who has insurance with his job, and they don’t have the ability to pay for an extra spousal plan.  Many of them aren’t childless like me.  They don’t have cars or expendable income.  Most of them don’t have family that takes care of them, and they spend so much time in hospitals they don’t have time to make friends.  They aren’t waiting for a transplant like me.  On behalf of them and myself I just want to say thank you.  Thank you America for choosing to spend the ridiculous amount of money it takes in a year to keep us alive.    I am sorry we have so much debt and it aches me to know that I am a cause of so much of it.  Thank you for caring to increase funding to our medical system to allow the technology that has so obviously grown leaps and bounds in the last 7 years since I was on dialysis.  We aren’t ungrateful, we are just sick.  So please excuse us for not knowing more about what is happening over seas while we fight for our lives.  It takes effort to stay alive for some of us, and we would much rather be home complaining about our jobs and the state of the economy.  But when you are as sick as we are it goes 

1)Live.

2)Everything else. 

I think I could have died last night

Something strange happened.  I was in a lot of pain because of my sore throat so I took my painkillers.  I also take zoloft for a post traumatic stress disorder I picked up this year.  At about midnight two nights ago, I just wanted to go to sleep so I took an ambien.  It turns out there are a few medicine interactions in there.

Let me be clear, I don't remember any of this.  I have strange pictures in my mind of coming to and seeing Matthew video taping me, but I wasn't able to talk to him.  I remember I was trying to tell him something.

He told me that I started talking incoherently, and wandering around the apartment talking and grabbing at invisible things in the air.  He would bring me to bed and put me under the covers until I fell asleep.  Then five minutes later I would be wandering out again looking for something.  He started videotaping me so he could show me in the morning.  I kept getting up for the rest of the night until he came to bed with me.  Watching those videos was absolutely terrifying.  I had no control over my body and at one point I came out to take more painkillers.  Matthew said after that he hid my pills from me.  He thought I was coming out to take more pills.  I believe he saved my life.  I wrote this on the second night of hallucinations:

So everything I read said that percocet overdose could lead to confusion and hallucinations alone, but mixed with ambien adds a whole list of things. I think the combination of those two drugs was really dangerous for me. Especially since I was in control of my pills even after I was aware of myself.

The even stranger thing was that I realized that I had looked up this very information last night when I was hallucinating. I thought maybe I was having some kind of overdose, even while I couldn't think straight. I was probably trying to tell Matthew that.

I know what was happening to me last night now. It's happening again but I can't wake him up now. I was trying to get him to help me last night. That's why I kept coming out. I lay down and sleep starts setting in because I feel druggy and tired, and then the zoloft jump side effect comes in hardcore (they are massive muscle spasms that feel like electro shock). I get electrified every time I get right into a dream state. So it slams me into reality without actually waking me. If I was on ambien I would just continue dreaming. I understand why the two drugs interact now. There must be the two chemicals in the brain that don't go together.

I keep jerking awake. I am so TIRED. I want to cry because all I want to do is sleep, and since I can't do that I want to wake Matthew up to tell him all this. But I don't want to wake him and annoy him with all this. He willl probably just say, "Great, Lets' just try to sleep now, ok?"

But I can't. I can't sleep. Even if I wanted to. It's 4:30 and I have nearly drifted off at least ten times. The jerking never gets lighter either. My body is exhausted and the benedryl is kicking in big time (I took two). Its making me just want to lay down, but I keep getting shocked. It's fucking torture. I'm starting to hallucinate again.

Now I know why celebrities die from overdoses accidentally.

I think I have strep

This is the worst sore throat I have ever had.  I remember sore throats when I was a kid.  They were horrible, but never like this.  I want to cry from the pain.  All I can do is take massive amounts of painkillers constantly.  And I am building a tolerance.  I can't swallow even saliva.  I have to spit into tissues when my mouth waters.  I haven't eaten, and I think I need antibiotics.

Hopefully it gets better tomorrow.

Dialy-ween!!

Happy Halloween!

I woke up and felt ok today.  So i decided I needed to celebrate Halloween.  Dialysis is NOT going to ruin my halloween.

I dressed as a creepy baby doll.  I figured if I was going to puke for the rest of the day, I might as well look ridiculous doing it.

Dialysis-Post Day 1

Everything will be ok.  Everything will be ok.  Everything will be ok.   I know that.  But I am having a really rough time right now.

Just to be clear, I vomited all day the first day of dialysis.  I was nauseated and had diarrhea that lasted into the next morning.  The shakiness is similar to the plasmapheresis and lasted about 12 hours after the treatment.  It’s awful.  It feels like you are in a car and a boat at the same time.  And there are hot then cold flashes constantly.   You feel like you have a fever, and food ABSOLUTELY would not stay down.  Neither would pills.  Hope that tomorrow is better.  I am Fucking terrified.

Dialy-BARF

Dialysis. 

They say it gets better, but let me tell you it FUCKING SUCKS.  All I can do is sit here in denial and look at my life and wonder what the hell happened to me??  Where AM I??  Because this isn’t me.  This life isn’t mine.  Nothing about this is what I want.  I want to go back to kidney failure.  At least I knew what to expect then.  But right now everything feels shaken up, and I don’t even know what meds to take or what foods to eat.  I have eaten about 500 calories for the last three days. 

I feel abandoned. Abandoned, abandoned, abandoned, abandoned, abandoned, abandoned. I feel betrayed betrayed betrayed betrayed.  I feel angry angry angry angry angry.  I feel sad sad sad sad sad sad sad sad sad sad sad sad sad.....

I have to go throw u

(Later, when I read this it is so sad to me.  I was so close to tears at all times that my eyes would water when I was laughing.  This was what I consider to have been my rock bottom.  I was really scared and sad.  When I am sad, I get angry.  And I had no words to articulate my feelings.  But I find this entry fascinating.)

The Photos are in!

Yay!!  They got here!!!  I needed this.

What kidney disease??

Control

Out of my hands. 

Everything.

My body

My life

My sex

My choices

My career

My husband

I see a gorgeous mountain scene in front of me, with a pretty babbling stream and a great off-road trail.  The sun is shining and the breeze is soft and perfect.  I am ready to put the car into gear.  But I can’t get over this stupid first crack in the pavement.

Imagine knowing everything you want to happen 20 steps ahead of where you are, but you can’t get anyone else to help you get there.  WHY DOESN'T ANYONE SEEM TO SEE HOW URGENTLY I NEED HELP??!!

I just need a transplant.  I just need that kidney inside me.   It sleeps next to me every night, tucked inside the person I love more than anything.  He protects it for me, keeping it safe for the day I will be able to take it and begin dancing again.  It is so close to me, but a universe away from helping me feel any better. 

Breathe...

I have him.   And he is worth it.  What we will be is worth what we have to go through now to get to it.  At least we had this summer.  What a great summer it was.  I spent all summer in the city with Matthew.  And it was my favorite.

(Again, coming back and reading this entry, I sounded like a psycho.  Its like I was about to cut him open and steal it myself.  This disease is crazy)

HMO Nightmare

My insurance is an HMO.  I have had really appreciated it as insurance for my chronic illness for several years now.  Yes I need a primary care physician to see a specialist, but since I have a chronic illness, I mostly see one doctor: my nephrologist.  At least I did only see one doctor until I was diagnosed with aHUS...

I was diagnosed in December of 2011.  At that point I was joining my husband's insurance plan at the beginning of 2012, also an HMO.  We thought it would be best for us and we can always switch in a year if we hate it.  Little did I know I would be diagnosed with one of the rarest diseases requiring me to travel across the country to see specialists that are considered out of my HMO network.

My doctor was twiddling his thumbs when it came to my kidney failure.  As soon as I was diagnosed, I was screaming "transplant!"  But it wasn't that easy.  My doctor has never treated an aHUS patient before, ever.  He didn't know what a new kidney would do, or if my body would even take it.  He couldn't even find studies on it in journals.  So I was thinking I had to make this kidney last as long as possible.  Because if it fails, it's dialysis.  And if I can't get a transplant, dialysis will only keep me alive for 30 years tops.  I don't want to die at 62 (ironically the age my mother was when she gave me this kidney), so this wasn't good enough for me.  I hit the trusty internet.

I found a website for parents of children with atypical hemolytic uremic syndrome and immediately contacted the woman who founded the site.  aHUS is considered a children's disease because studies show that 40% of people that have it are children.  Honestly, I believe there are more adults that have it that haven't been diagnosed, but that is a different story.  I even had it for fifteen years before we knew! (I later was kicked off that website for posting "inappropriate hospital pictures".  I guess my IV pole dancing wasn't funny to them.  I thought it was awesome.  But I laugh off most of my pains)

The University of Iowa!  The place that studies my disease!  I decided I would need to see them.  I went to my doctor one more time to find out his plan.  His plan: wait until my kidney fails, then go on dialysis.  My plan:  Work my ass off to get a transplant so I can get back to my life as I know it.  My plan was way better.

I contacted Iowa and got an appointment to see them in person in September.  I figured getting my insurance to approve would be easy.  They are the only people testing for my disease, and the only specialists in the country.  WRONG.

Here's the catch.  I had to go to my primary care physician to get a referral.  Dr. Viera, a nice little lady used to treating coughs and everyday little things, knows NOTHING about me.  In fact, she seems terrified to touch me.  Usually all she does is check my blood pressure and send me to other specialists. She doesn't even have medical files on me.  I get an appointment with her and explain my need to get to Iowa for a transplant evaluation.  I told her all I needed was for her to write a referral to my insurance so I could go.  She assured me it would be done.

It was not done by the time I saw the doctors in Iowa.  My insurance is furious.  I called her office and they tried to submit a referral after the fact, but for some reason Blue Cross won't accept backdated referrals.  So I was going to be stuck with a huge Iowa bill just for taking my health into my own hands.

After my Iowa transplant evaluation, Blue Cross would not approve my transplant there.  They claimed I could get a transplant in Oklahoma, even though the Oklahoma Transplant Team has never done an aHUS transplant.  I don't know about you, but one thing I never want to be first in is SURGERY.

So the only option might be to change from a HMO to a PPO.  But we can't do that until January 1st 2013.  Meanwhile, my kidney is hanging on by a thread (and honestly I should have started dialysis a long time ago) and my head is getting cloudier by the day.  I think dialysis is looming closer but I don't want that.  It is going to be awful.  I have to hang on and keep fighting.  There must be some kind of loophole.  Does anyone have a spare 2 million dollars hanging around??

Sorry, I have kidney brain

Today I called a doctor's office to confirm an appointment three times.  The second two times I didn't know I had spoken to the same woman until she said, "Ma'am, we spoke earlier.  We had this very conversation".

Jeez this disease is making me look like a crazy person!

My OUDaily Article

This is great article that was published in the OU Daily.  What a great birthday present.


http://www.oudaily.com/news/2012/sep/24/elliskidneydisease/

I promised you pin-ups!!

So I did a photo shoot today with Dynamite Dames.  It was my first time modeling like this.  Really fun!

Just a taste:

I won't get the pictures for a while, but I promise pin-ups in the future.  I thought it was something to distract me from feeling sick.  And they can always photoshop the bruises!

The Tedium of Chronic Ilness

August 20, 2012

(This is a letter I wrote to my hospital and an example of the messy side of chronic illness.  I wrote this bed-ridden and sick and nearly hospitalized.  As you can see, it took me from December of 2011 to September of 2012 to clear up this issue.  After this relatively curt letter, they waived my bill and that was the end of it.  I could have been seriously injured, or hospitalized if I had continued with the instructions I was given originally.  And I am forced to go back to the same hospital where those very nurses work every time I am admitted)

To Whom It May Concern:

            I was admitted into OU Medical Center Hospital at Presbyterian Tower from December 21^st to the 29^th.  I had a central line inserted into my chest so that I could receive IV medications at home.  I was released with specific instructions on how to care for the tubes and how to give myself IV antibiotics through it.  However upon attempting to use my tube, I found that the instructions I had received were incomplete and possibly incorrect.  After getting in contact with a home care nurse consultant and the doctor who released me from the hospital, I was told to come into the emergency room for assistance. 

On December 31^st of 2011, I went to the emergency room.  I brought my own supplies and IV medication with me.  I was consulted by a dialysis nurse who came from a different floor. She explained how to use the tube correctly.  She confirmed that the instructions I had been given were incomplete and gave me the correct method of using the tube.  Upon leaving, as I had received NO treatment from the emergency room, the Doctor on duty said he would waive charges for us.  He explained if I get charged, to talk to billing and the charge would be lifted.

To reiterate, I was in the emergency room for the sole reason that a nurse from Presbyterian Tower had given me incomplete directions for my home care.  Because of this, I am contesting this charge.

I had the charge waived from the physician’s bill.  However I am still being charged for a $100 copay that I was told would be lifted.  I have enclosed the letter I received stating the charge was waived.  I have now been sent to collections for this charge.  I would like to resolve this matter. 

Thank you,

Tonia Sina Ellis