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.