The Kidney Post Part II

September 15, 2014

I’m writing this while wearing my 24-hour blood pressure cuff.  Oddly enough, it is the most uncomfortable part of testing so far.  I mean, I’m not getting light-headed like when they take my blood (every fucking time, man), but it’s rubbing and I’m pretty sure it’s going to leave those weird red heat rash bumps on my arm.

God, I’m an asshole for complaining about this at all when my recipient has to hook up to machines to stay alive…

Today there was a class, a power point about the donation process.  I met Mira who said she was really glad to finally meet me and that the rest of the donor team talks a lot about me.  That took me by surprise.  I love attention, don’t get me wrong, but these women are transplant doctors and case workers and psychiatrists.  They are busy and important people.  I know they have to meet up periodically and discuss my test results.  It never occurred to me that they would talk about me when they didn’t have to.  

The class was just Mira and me, and most of the information she gave me, I already knew from the meetings the other day.  But we got to talk about it in more detail, and she went over my test results with me!  My lab work so far shows that I am very healthy; I’m one of the most “normal people” she’s had in her office, she says.  I swear, only at Mayo Clinic have I ever been called normal (or “stable”, as the donor team psychiatrist once referred to me).  It’s a trip.  Mira also went over the chains of recipients again, explaining how my one donation could give a lot of people kidneys.  I got a little teary-eyed at that.  It makes me feel really small and big at the same time, like sitting by the ocean at night. 

 I also met the first person at the clinic who I did not like.  And I mean, all things considered, one person out of so many is pretty great! The young guy who suited me up with this blood pressure monitor was an arrogant toolbag.  Mira had asked him to fit me for it earlier than scheduled so that I wouldn’t be waiting an hour and a half to have it put on.  He agreed but spent the whole time complaining about how he was supposed to be at lunch.  He told me ALL about his tattoos, and he used choice phrases like, “Most women get all mad that they can’t shower while they wear this” and “Here’s a paper where you can keep track of your activities.  It’s like a diary while you’re wearing your monitor.  Women really seem to like doing that part”.  Being such an expert on women, I’m sure he would be flattered to know how he ended up in my own personal journal.  The good thing is that I will probably never see him again.

I have an interview on Thursday, then Monday is my last day of testing.

September 18, 2014

                The Thursday interview went great!  I met with two surgeons and got to see the photos of my CT scan last week.  They told me my kidneys were beautiful (really!) and since I only have one big ol’ artery coming from each one, it is going to be a very simple surgery. They would take the left one because it’s a little bit smaller.

 The surgeons explained how the procedure was going to go. It’s laparoscopic, so I will have two small scars, one between my ribs, one on the left side of my torso.  Then there will be one longer incision down on my lower abdomen, like where a c-section would go.  That’s where the kidney will actually come out.  It was funny- they were so concerned about if I had any tattoos on the left side of my stomach, like I would care at all if my tattoos got changed in the process of donating a kidney!  I guess it was really nice that they cared.  As long as my tests on Monday go well, I will be a good candidate for kidney donation!

September 22, 2014

                My alarm went off at 5:30 this morning for my last day of testing.  I’d been warned about how boring today was going to be.  This is the test where the nurse will inject me with more contrast dye then wait an hour to take blood, then I pee, then we will do an ultrasound.  Then I wait another hour and repeat.  I just sit in the room for two hours with my blanket and bottles of water.  Luckily, I had Ryan with me today, so at least I had someone to talk to.  It’s nice, and since I’m still getting to know him, there’s always something to talk about.  He also brought me books and a painting he did for my birthday.  He is also terrible at keeping me calm while the nurse takes my blood.  He held my hand, but he also had comments like:

 “Oh wow, that’s a big needle!”

 or “It’s just coming out of you!”

 and “Ooh, right in the vein!”

“Is your blood supposed to be so dark?  It looks like grape kool aid.” 

and “I can’t believe you have any blood left after that!”

Hey.  Nobody’s perfect.

I got on kidney chat tonight with Amy on Twitter.  I met a few donors online, one of whom also made a movie and a book based on her non-directed donation.  I can very much identify with a lot of the things she says, and hopefully her book and movie and Amy’s documentary on living organ donors will help inspire other people.  And it’s just nice to know that all of these big feelings that I’m having are normal and that I’m not alone.

September 24, 2014

                Andrea (one of my nurses) called me yesterday afternoon while I was at work.  The team met up for the last time and determined that I am a candidate for kidney donation. 

 I am going to be a kidney donor.  

There are a couple of blood tests that I have to take this Monday, and after that my info will go into a database to find the biggest chain of people we can help.  So even though I’m giving one kidney, many people could be helped by my donation.  It feels really good, like I’m part of something so much bigger than I’ve ever known.

I told the team that I would like to donate sooner than later, and Andrea said that since I have O Positive blood, I can donate to most people, so it shouldn’t take too long at all to find a match.  I will have four to six weeks to prepare, since that is how long they want me off my hormones before the surgery.

It’s more real now, and it only makes me more certain that this is what I’m supposed to be doing.

The Kidney Post Part I

August 1, 2014

Yesterday was my 31^st birthday, on the 31^st of July, which makes it my Golden Birthday.  I didn’t know Golden Birthdays were even a thing until Ashley Yourkowski explained them to me in hair school.  But I love any reason to make things special, so this year I decided to use my 31^st birthday as the start of my new journey as an altruistic (aka non-directed, or anonymous) kidney donor.  As of yesterday, I am taking better care of myself to make sure that if I don’t qualify, it’s not because I drink too much coffee or soda or because I don’t eat enough.

I woke up yesterday eager to make the first phone call to the Mayo Clinic in Phoenix.  Within a couple of hours I received a follow-up phone call.  I was in the bathtub, which is funny and kind of appropriate, since I always picture kidney donation as a person waking up in a bathtub full of ice (did that actually ever happen to anyone?).

I got two more phone calls this morning from other women, all of them wanting to know why I want to do this.  I guess the answers I gave them were okay, because we are going to start the testing process soon.  The first meeting, they said, is a long one where we all go over the surgery, the risks, the follow-up, etc.  They have to make sure I’m not crazy, which is funny because, really, you have to be at least a little bit crazy to let a perfect stranger have one of your organs.  

I’m sure there will be moments of doubt, or maybe I’ll even back out.  That is always an option.  But I don’t think I will.  It’s not really in my nature.  I’m honestly more worried that they will find a reason that I’m not a candidate.  I’m not sure why I wouldn’t be, but there are a shit ton of reasons that people are turned down, things they weren’t aware of when they started testing.

God, I’m not sure what reasons I gave today when asked “why”.  Why DO I want to complicate things and risk my life for someone I don’t know?  I guess, basically, it’s just something I’m compelled to do.  It feels right.  It’s the next thing in my life.  When I think about it, I am aware of the seriousness of the whole thing.  The idea of another human being waking up, wondering if she (I’m assuming my match is a female) will get news about a new life before the sun goes down.  It’s not that I feel like I’m saving a life, even though that could be said, but it’s more that I’m helping with the quality of the life they already have.  People can live years on drugs and dialysis machines without a kidney donor, but that is a limited, painful, frightening way to live.  If I could help someone take back the spontaneity of adventure, why would I ever want to say no?  Adding years to someone’s life is nothing for me to turn my nose up to, but giving someone the opportunity to life the life they want along with that time?  That’s the kind of person I want to be.  It’s who I am, I guess, already.  I can be moody, overbearing, impatient, loud, and annoying.  But I am also loving and giving so humbled by the fact that my atoms came together by chance to form a healthy, happy human being.  And not only that, but I was fortunate enough to be born in this country during this time.  The fact that I can read and write and consider the fact that I am a jumble of atoms in the first place blows my fucking mind! 

 Surely this isn’t the most scatterbrained journal I’ve ever started.  Hopefully I will actually keep up with this one.  I’m not the best at journaling- they always end up getting read and I get all weird.  But this one is more specific than most.  I have no idea if I will do anything with it, but it should help me sort through my thoughts and keep me organized.

August 29, 2014

Day of All the Interviews….

It’s been a month since I called to make the arrangements.  I mean, that’s GOOD, since it takes me a month to piss clean, and I will admit, I’m gonna miss the weed.  In that month, I had a ton of phone interviews with the ladies at the Mayo Clinic Transplant Center.  Waiting for a month has not been easy.  At least I talked to everyone in one day- the social worker, case manager, nurse, psychiatrist, and a doctor. 

 I was at the hospital from 7 am until 2:30 pm.  Most of it was just me explaining over and over again what I thought the process would be like and why I wanted to donate.  They also asked me about my family- so my dad came up.  And they asked about my own medical history- so my abortion came up.  But, I mean, I’m not the only person who’s had to deal with either of those things.  The nurse said that people donating to strangers is very uncommon so they need to make sure I’m in this for the right reasons.  I totally agree with that.  Obviously, if I were battling with that kind of shit still, donating and organ would not be the healthiest way of dealing.  I guess I thought anonymous donation happened all the time.  It definitely makes me appreciate what I’m doing.

Talking to all those women made it more real, in a good way.  I don’t feel as awkward and embarrassed telling people about it now.  It’s more like I want people to see what it’s like going through this.  And if there’s someone out there like me who thinks, I’m the kind of person who could do that, then it could be a catalyst to change someone else’s life.  After all, if Danielle hadn’t tried to donate her kidney and if Amy Donahue hadn’t mentioned her kidney donation onstage, it would never have crossed my mind. 

At this point, it’s just me waiting again for everyone who interviewed me today to decide if I should proceed to the physical testing.  More waiting.  But at least we are going to the ocean for Labor Day.  That makes everything in my head peaceful, at least until we get back.

September 12, 2014

Things are starting to move a lot faster.  That’s a good thing.  I feel like until now, it was more waiting than anything else.

On Monday, Amy D. drove me back to Mayo- SO awesome of her to do, by the way.  She donated three years ago and has started a non-profit to help mentor other donors.  Having her for support was really great, and I’m hoping the other people in the waiting room enjoy her humor as much as I do.

 I went in first for my EKG.  My heart is super healthy (I’d like to credit my vegetarian diet and my sense of romanticism).  Then we had a blood draw (ugh), urine sample (fun!) and my chest x-rays.  All on Monday.  After dragging shit out for almost 2 months, I am so thankful we are getting this show on the road.  The best part of Monday’s visit was when they gave me my pee jug!  I know it’s gross and immature, but I was so excited to get it.  I had this whole photo series planned out of me and my pee pee container on the bus, at the movies, at the park.  But then the nurse informed me that I had to keep it refrigerated.  So I got a few shots of it at home and that was it.  I ended up filling it halfway and the online “Patient Portal” showed that she clocked in at half a gallon!  I was pretty proud.

That Patient Portal, by the way, is a blessing and a curse.  My itinerary is on there, so I can easily keep track of my schedule.  Any changes to it by the staff are given to me on my phone in real time.  So are my lab results…which is what makes me CRAZY.  Anytime something shows up abnormal (2 things on my small urine sample the other day), I can’t quit thinking about it.  I try googling the results, but it’s not pulling up any useful info.  I have no idea how big of a deal these abnormalities are.  I’m trying to practice mindfulness and living in the present, but it’s really fucking hard when you can feel somebody else somewhere in the world counting on you this much.

Today I had more tests.  I drove myself this time.  I figure I did okay with Amy and I had a backup ride home in case I passed out, which almost happened.  I am so bad when they take blood.  I donate blood 3-4 times a year.  I had it drawn all throughout my pregnancy.  I don’t know why I don’t get better at it.  The poor girl today, she had me leaned back with ice packs on my neck, she kept me in conversation, she was quick.  I could feel the blood draining from my head, but I stayed conscious.  When she was finished, I sat there, still kind of blue-lipped, when she turned to me and said, “You’re going to kill me, but I forgot a vial”.  So she just dove into the other arm, and now I have bandages on both of my elbow ditches.  In the grand scheme of things, it wasn’t a big deal, and I am proud that I didn’t completely ghost out.

I went back into the waiting room from there.  I read for a bit, and then I closed the book and tried to juts be present, in the moment.  I noticed for the first time that not all of the chairs match.  The cushions all have different colors and patterns.  Also, the trash cans, the ones built into the walls are super modern-looking.  And I wonder why that is what I notice.  I try to take in the energy of the other patients, but I don’t want to stare or invade their space.  There are so many different people, different illnesses, different emotions- it’s a lot to feel at once when the waiting room is full.  Many of them are older, but not all of them.  There are quite a few in paper masks, some in wheelchairs, some bald from treatments.  The spouses are usually being strong and supportive, often pushing the wheelchairs and cracking jokes.  The parents pushing their children are the ones that seem to be having harder times holding back tears.  The patients themselves, they change by the minute.  Understandably so.  There’s a lot of fear, anger, sadness, but there’s also hope and acceptance and trust.  It’s strange to sit with them and know that I’m going into this as a healthy human and how quickly that can change.

It was the first really emotional moment I had so far, and I was glad I went by myself today, with no distractions.  This was also not the only emotional moment of the day…

My last test at Mayo was a CT Scan.  Basically, my body was on a tray that was pushed through a Stargate repica while dye was injected into an IV port in my arm.  The dye makes you feel high for about 3 seconds, which is just fantastic. For the CT Scan, I had to change out of my clothes and put on a hospital gown and white pants that remind me of my middle school karate uniform.  They gave me a bag for my clothes so I could put them in a locker.  The bag was white plastic, drawstring, with the words “Personal Belongings” written in bold blue letters.  I recognized it as the same bag they had handed to my family when my aunt Angela had died in a car crash when I was nineteen.  It was such a terrible feeling, I remember, seeing my uncle with that bag of bloody clothes, unsure about what to do with him when he left the hospital.  And suddenly, there I was, with my own bag, perfectly healthy ( I hope, anyway) and putting my own clothes in there. 

It was a big feeling.  It was symbolic, but I can’t tell what it represented exactly.  I just know I’m going to come out of this a lot different…

Second Verse, Same as the First

    I have my own car again, along with my own apartment in Tempe.  It all happens so fast for me- all the changes come at once and before I know it, I'm starting from scratch all over again.  But every time it happens, I am reminded how much relief and freedom come from having a space of my own, roaches and all. I also have to come to terms with how helpless and pathetic I feel when I am sharing a living space and a vehicle with another person.   I am independent, probably to a fault, and this is what makes me the happiest.  I’m better at making ends meet than I am at compromise, and I am very aware that this is not a healthy thing.

      I am scared as hell, financially, and starting over would not have been possible without the kind hearts of my friends. I really hope all of them understand my appreciation for the countless favors, and eventually I hope to help them out as much as they’ve helped me.  Right now is not easy.   This is life below the poverty line.  This is “no internet” poor.  It’s  “let’s pick which bills we pay this week” poor. It’s poor like we were when my mom left my dad, and that’s how I know I’ll be okay.  While it’s not very comfortable, I am going to try and get as much as I can out of it.  

  I've been driving around by myself in the desert a lot lately.  I just take off, usually around seven o’clock, out to the desert.  I end up around Saguaro Lake, and I blast whatever mix tape I’ve made for the occasion.  From out there, I can’t see any of the city lights.  I get a view of the stars and the moon and the desert landscape.   And the closer I drive towards the lake, the more moisture is in the air, so I roll down my windows and drive slower. I let my fingers fall out the driver’s side window.  I play an imaginary piano, the tempo changing with the speed of the car.  I hit all the right notes, and even if I didn’t, the song would just change to accommodate my crooked pinkies.  I’m nineteen again, driving through curvy country roads, smoking joints with my friends.  We used to call this “hitting a cruise”.   Nobody out here calls it that.  

      I usually hate driving.  I’m not great at it, especially at night. It’s usually a major source of anxiety for me, in all honesty.  The first time I drove out to the middle of nowhere, my intention had been to find a good spot to park, sit on the hood of the car, and look at the stars.  What can I say?  I’m a romantic.  Once I got there, though, I discovered that most of the rest stops are blocked off after dark.  And once I realized that I probably wasn’t going to have this peaceful, introspective night of stargazing and accepting my space as a tiny blip in the universe, I gave in and enjoyed the experience of driving. 

 Winding roads without city lights require your attention.  You don’t get to become lost in your own thoughts.  Navigating each curve is deliberate; it’s not like getting on the freeway and then missing your exit because you zoned out while recreating an imaginary argument in your head.  You concentrate on the task at hand or you become distracted and veer into a tree. Driving becomes forced mindfulness; it’s meditation in such a basic form.  It hits me, suddenly, and it’s so fucking obvious.   It’s such a clichéd message, this whole “it’s not the destination, it’s the journey” bullshit.  But that’s what it is.  And it hit me hard.

I’m starting over, and that means learning some of the same lessons over again, for real this time.

My apartment complex isn’t necessarily dangerous, but it is a shithole.  I moved in on Valentine’s Day and I am STILL waiting for an oven rack.  My neighbors hear me having sex through my paper-thin walls, and I hear them arguing.  I have a car because of a generous friend who sold me his for four hundred dollars.  I am so, so grateful for a place to live and a car that works.  I’m not saying that I’m not.  What I am saying is that this is not where I want to be forever.  And it won’t be.  But if I can stop looking at what I want to eventually become and just appreciate what I am right now, I can appreciate how much I have evolved already.   I am proud of the fact that I haven’t got everything all figured out.  I am not done learning.  I am not done traveling or laughing or mourning.   I’ve already lived years longer than some of my friends.  Even if I’m struggling… especially if I’m struggling… these are the times that I find out how strong I am and how it’s okay for to rely on other people for help when I need it.  These are the hard times that yield the best stories.

There are three lost continents. We are one: the lovers.

"Funny how we think of romance as always involving two, when the romance of solitude can be ever so much more delicious and intense."  - Tom Robbins



I'm not someone who can easily pick out a favorite anything.  My favorite songs, bands, movies, quotes, and even people, they change often enough for me to know that my tastes differ too much to make a solid decision.  Choosing a favorite book?  Forget it.  There are far too many books, too many characters, too many stories that speak to me.  I read "The Perks of Being a Wallflower" at the most perfect time in my life.  I was lucky.  It was published (or at least became popular) when I was barely a teenager. It made a huge impact.  But does that make it any more important than "The Secret Garden", which I read over and over growing up?  I spent years of my life reading "The Stand" by Stephen King every summer at the beach.  I still love that book.  I guess my favorite book just depends on what I need from my books at the time...

Right now, for the past few years, actually, but ESPECIALLY right now, it's "Still Life with Woodpecker".  Tom Robbins has this gorgeous way of writing.  His sentences can stand alone as some of the most beautiful things that have ever been written, in context or not. You could pull any passage out of it, and the quote would be worthy of a tattoo (or at least a time-consuming cross stitch project).  Tom is there for me when I can't accept advice or support or love from anyone else.  I keep a copy of "Still Life with Woodpecker" by my bed, like a bible, for when I need an answer for things.  It's always there.  It's a fairy tale.  It's a bit of a femenist manifesto.  It's a guide to life.  It's a reminder not to take things so seriously.  It's a handbook for outlaws.  It's a guide for how to make love stay.  It's a damned fine love story.  

I have a love affair with this book. 

I've cheated on everyone I've ever loved with this book.  

I keep an extra copy onhand as often as I can, in case I meet somone who I feel needs to read it.

It keeps me silly, young, and rebellious. 

It reminds me that magic doesn't have to go away.  

It may one day reveal to me the purpose of the moon.  
 

awakenings

I forgot I had a blog for awhile.  I journaled like hell when I was going through my kidney donation.  I think eventually I will share the entries online.  But not right now.  I need to process all of that, and it's hard when all of this other shit is going on.  I'm not sure if the kidney donation was a nice distraction for the problems in my head or if it was a catalyst for big change.  Either way, long story short, I am moving into my own apartment next month.  Gren has his own place.  I hate that I'm hurting him.  I hate that I can't just be happy being stable.  I hate that my decisions affect so many people.  But I don't want to pretend things are okay if they're not.  And change is always good.  It just doesn't always feel like it...

Perry (the fear of losing it, personified)

I had the most fucked up dream last night. It was one of those where you wake up scared, so sure that it just followed you into reality. I'm not sure why I'm even sharing it this late at night, except maybe I think it will make me feel better to get it out. Warning: I am typing all of this out on my phone, so please ignore the mistakes. This will probably be a long one, especially to type out on a tiny flat surface.

Here goes...

I'm not sure when it started. But I know that at some point I am sitting on the toilet taking a piss when I notice he's there. Just standing in the doorway, looking at me while I pee. It's the shoes I notice first, those Timberland brown boots that rappers were wearing for a short bit but now are back to being work boots for blue collar white guys. They're clean, just like everything else he's wearing. White pants, not jeans, more like scrubs. Yeah, they're definitely scrubs. Along with the white scrub top he's got on. It's all loose, and the shirt is only halfway tucked in. The guy has gotta be well over six feet, and he's pretty thin. He's got reddish blond hair, and he can't keep still. Not in a methy way. More in a anxious and impatient way. I get it. He's fresh out of the mental ward. Whether he was let out by the doctors or if he escaped is unknown, but somehow I know his name is Perry. And he scares the living shit out of me.

I try to ignore Perry sometimes. He mostly just stands there twitching over me. He never speaks unless spoken to, which is fine because I hate his voice. It's twitchy just like him, like his vocal cords are wishing they had a million other things to do. When I ask who he is, he tells me that I created him. He's in my head. And now I really don't want to speak to him.

It's true. No one ever sees Perry. I have no doubt that he's in my head. Schizophrenia has happened before in my family, so why not me? I can lose it just as well as anyone else. I realize that he only shows up when I'm alone, which is really annoying. This is why he comes around so often when I am in the bathroom. With every glass of water I drink comes the dread of having to see those brown boots when I can't hold it anymore.

I tell my friends what is going on, and while they are very understanding, it's not easy to keep me company all the time. I try going to public restrooms, but I see those awful shoes under the stalls. I beg my friend, Jen, to just stand in the stall while I go, but the sight of those boots causes me to start screaming and crying so hysterically that she had to carry me out of the public restroom. What's worse is that I've pissed myself while freaking out.

This whole avoiding Perry is only making him more upset. He's angrier, but he doesn't speak. I just see it in his sunken eyes and his violent jerky hand motions. He's in the elevator. He's in the closet. Those fucking boots clomp around the hallways at night. And it's all in my head, and no matter what I do, he won't go away. And I know that no matter how loud I scream, he is not going to just go away.

It sounds so silly now that it's all written out. I mean, how scary can a guy named PERRY really be? It's just the fear of being crazy, I guess. Uncurable. Seriously fucked up.

On a related note, I am in our new house. I've spent almost every night here alone because Gren is working overnights at the hotel all this week. The obvious symbolism of this dream is definitely not lost on me. Don't worry, subconscious. I read you loud and clear.

The Lovers, the Dreamers, and Me

Every now and then, I have these moments of sheer joy, clarity.  A sense that I am perfect the way I am and completely fine.  That I am on a good path in the universe, and that while I make a valuable impact on the world, it can go on just fine without me.  In this tiny bit of time, I am not my body or even my mind or my emotions.  I am one and the same with everyone and everything in time and space and even beyond.  My reality is only as certain and solid as I make it, and my perception of the world can be altered with new knowledge and intuition.  I am not the center of the world, and I can take solace in that, seeing as that world revolves around the sun, and the sun is just following suit of a black hole, and that black hole is one of thousands, millions, that could be connected by wormholes all across the vastness of space, which is pulling itself apart at rapid speeds.  Nothing is the center of anything, and I am here for a few years to experience as much as I can.  And I may not be a physicist or a doctor or a teacher, but I meet new people every day and have the ability to make them more confident with themselves. And while doctors are necessary for modern medicine, even they feel insignificant compared to, I dunno, the concept of dark matter.  And for a split second, I get it.  And I don't get it.  And it's beautiful. 

I've been having these moments more often lately.  And sober, which is crazy, because honestly, this is shit that usually takes some psychadelic and mind-altering chemicals for me to achieve. 

It could be that I have been more conscious of my thoughts and responses to situations.  It could be that I've been meditating.  I've been exercising on my terms, doing things that make me happy.  It could be that I have been reading up on the multiverse and string theory, atstro- and quantum physics.  I am putting pieces of my scientific brain with that creative and hippie part of my brain, and they are starting to line up surprisingly well.  I am trying to take all of this with a grain of salt and trying to make sure to laugh at it.  I think of all of this, and then I also remember that mental illness runs in my family, so this could also be a manic episode or the beginning stages of schizophrenia (which my great grandmother suffered from).

And in the end, are those two things really that far apart?
And as long as I'm being a happy, useful humanitarian... does it really matter?