Thursday, April 30, 2015

The Kidney Post Part IV



October 12, 2014

                I may have a match.  Already. I was in the database for one week before I got the call.  It’s a six-person chain with my kidney ending up at the Mayo Clinic in Rochester, Minnesota.  I could say that I haven’t journaled about it yet because it’s all sinking in.  The truth is, though, I just suck at journaling.

Two days after the phone call, I received a package from Minnesota with the vials in it for my blood.  At 7 am tomorrow, I will go back to my Mayo here in Arizona, fill those up, and then I’ll wait some more.   I’m hoping this is it.  No more waiting.  I had a dream last week that they would schedule my surgery on November 12th.  That’s one month from today, so I don’t see that as a possibility.  But regardless, it’s definitely coming up soon.  This is huge.  What I am getting out of this is so amazing.  It’s indescribable.  I am trying to keep my brain busy on what I have going on in the present.  Yes, I will be donating an organ very soon.  But...
In the meantime there is work.
In the meantime, there’s my daughter.
There’s Halloween.
There’s laundry.
There are books. 
But the whole time , in the back of my mind now, is donating a kidney.



I’m not sure I believe I have a” purpose”, but I do believe that I am doing the right thing right now.  My body is a prime candidate for donation, and I am so beyond happy to do it.  And for whoever gets my kidney, I hope it works out for him or her.  And if they inherit any of my quirks or habits, I hope they get my joygasms and not my nail-biting.



November 18, 2014

The waiting has been killing me.  I think that once this is all done, I will appreciate the waiting.  It makes me more patient, more mindful.  But it also distances me from the situation.  I’m no longer at Mayo twice a week.  It’s been almost  two months since my last test.  It’s almost becoming less real. Or at least it was…

Mira called today.  My recipient has been found.  The other donors and recipients in my chain are done testing.  They are talking about scheduling the surgeries as soon as December first.  That’s two weeks away, and I really hope that’s when it happens. 
It’s surreal.  I’m so happy.  I’m a little terrified, but I’m more happy.

I hope things start to move quickly again.
I hope everything goes well.
I hope my recipient can understand on some level, how much I am getting out of this.
I hope my family doesn’t worry too much about me.
I hope I get books and ice cream in the hospital.
I hope the new kidney works for my match.
I hope he/she gets books and ice cream, too.



November 19, 2014

                Twelve days.

If everything goes as planned, the surgery will happen in twelve days.  My mother is freaking out.  I can't really tell how Gren is, but I think he's okay.  My friends are all planning on bringing me food and babysitting me for the first week home from the hospital.   I’m not sure how I’m feeling.  But it is soon, and I am thankful for that.



  Mira called me back today to go over one more blood test this Monday and also to help me apply for financial assistance.  She said it’s definitely looking like December first.  I am excited but kind of scared, like being strapped to a rocket ship for the first time except not nearly as much pressure is on me to know what to do.  I just show up and get knocked the fuck out and then I wake up a few hours later.  I’m the lazy man’s type of hero, I guess, and I'm okay with that.

God, twelve days…

I don’t think I’ll have a goodbye party or anything, but I will spend a good amount of time with my kidney.  One-on-one.  Just to bid it farewell and to say thank you for everything it’s done for these past 31 years in my body.  And also to say I’m sorry for all the times I didn’t appreciate it.   There is no doubt that it will be appreciated in its new home.

Thursday, April 16, 2015

I found this tonight



damn.

The Kidney Post Part III



October 2, 2014

                Everything I’ve experienced in this process has felt really good until now.  It’s not that I’m having second thoughts or anything like that.  It’s just the opposite.  I wish I could figure out a way to grow more kidneys so that I could donate to more people.

                Two nights ago, my friend Stacey tagged me on a post on facebook.  One of her friends back east, Becky, needs a kidney and is reaching out for a donor online.  It’s not uncommon; since I’ve started this journey, I’ve seen countless facebook pages for people like her.  It’s heartbreaking, and it made me firm in my decision to donate anonymously.  I could easily go through and pick a recipient that I thought was most like myself.  Or I could try to find someone who was the complete opposite.  I could make a list of people and pick one at random.  But no matter what, someone would lose out.  Until now, I have had no control over that.  My only responsibility has been to stay healthy and willing to donate.

                It’s really cool that Stacey tagged me, by the way.  She saw her friend in need and knew that I was giving a kidney.  It makes perfect sense, and that is how so many transplants happen now- via social media.  I began talking to Becky online and then via text.  She is so great.  She’s funny, she’s into puppets, totally a person I would be friends with.  She’s on dialysis and losing feeling in her legs.  I could call Mayo and tell them to stop the chain so I could donate to her.  I felt so torn.  Is telling one person yes and a whole chain of people no okay because there’s a face and a voice to that one person?  Would any of these people fault me if they knew I was saying no to them?  But they wouldn’t know…

In the end, I had to text her and tell her I couldn’t be her donor.  Her hospital wants me to fly to Florida for three weeks, and I don’t want to recover without my friends and family close by.  She understands.  But it has to hurt.  She has had two other possible donors back out already.  I wish I could do something.  I feel like I have so much power to help people, yet for so many others I am helpless.  I’m doing the best I can right now, for a stranger.  And hopefully soon, a stranger could come through for Becky.

I just don’t get it sometimes.  I understand that this is a big weird thing that I’m doing.  I know that the majority of people couldn’t do it even if they wanted to, due to the testing.  But surely SOME people could do it.  I’m not upset with anyone in particular.  The people I know are not selfish or mean.  They all help out with things that are important to them.  They all are giving so much already.  They inspire me do things like this in the first damned place.  I guess it just hurts to be able to help someone and to leave so many others in pain.  It’s not an easy feeling to put into words…

This is the link to Becky's search for a kidney. Please watch, share, and do what you feel you can to help. She is amazing.



October 15, 2014

I’m an emotional wreck (in a good way, I think?).  It’s not surprising.  My whole world right now revolves around kidneys.  I have this huge cloud around my head most of the time, but it’s not like a depressed rain cloud.  It’s more of a storm of “How amazing and magnificent it is that I was born at all!”  It’s reminding me how big and beautiful the world is, whether I’m in a good mood or not.  Big bolts of lightning hit my brain like, “LOOK AT THAT GODDAMN MOUNTAIN! IT’S SO FUCKING GORGEOUS!”

My “joygasms” still come pretty frequently, and they hit very hard.  I’m pushing back tears almost daily.  Last night, Cami and I sat around and played Uno and Candyland.  Then she pulled out her karaoke machine and sang.  I had to run to the bathroom so she wouldn’t see me cry. 

I don’t think this surgery puts me in great danger.  I’m not afraid of it.  But this experience is showing me how beautiful life can be.  These people on dialysis every day, they’re working to stay alive and fighting so they can discover as much of this world that they can. It’s inspiring.  And it reminds me that I will die.  And when I do, I hope Cami remembers nights like last night.

 I’ve had a great life.  I don’t want it to be over.  I want to meet as many people as I can.  I want to hear their stories, and I want to share mine, and I want to feel as many types of love as a human can possibly feel.  I want to try a million new tastes and smell the rain in Japan, and I want to honestly say that I know how black holes work.

                But if I don’t get to do any of those things, if I die right now, I will fade out of this world knowing I did all I could and loved as much and as hard as I knew how.  And I am so happy with where it got me.




Monday, April 13, 2015

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.

Tuesday, April 7, 2015

The Kidney Post Part I



August 1, 2014

Yesterday was my 31st birthday, on the 31st 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 31st 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…