New Pictures

For those of you that don't know, my career is studying and appreciating the human body.  I teach movement to actors, and I choreograph intimacy on stage.  The human body to me is the center of my life.  How it is functioning, how it moves, how it feels, and how it looks are all things that consume me on a daily basis.  The pin-up and boudoir pictures for me are a representation of that.

The fact that there could be so much wrong with my body on the inside made me hate it for years and years.  In college, I thought I was the ugliest girl out of all my friends.  I hated my kidney disease and what it was doing to my body.  I wanted to be graceful and beautiful but I didn't have any capacity or confidence to do so.

Then in graduate school, I was taught by my mentors Aaron Anderson and David Leong to really see the human body and what it is saying.  They taught me to appreciate my own body in a way I never had.  At the same time, they taught me how to control my body in every situation.  I learned to appear confident, or feminine, or shy, or masculine, or whatever the situation called for.

Now I teach movement to college students.  I do it because I want to teach what I wish I had learned earlier.  That sexuality on stage and off is not scary and it is not that taboo.  It is natural.  I consider myself a different sort of feminist.  I am a feminist that uses her femininity in a way that works for me.  I am a woman, why would I ever want to be anything else?  This is why I teach sexual intimacy on stage to college students.  I am very passionate about it.  No one is teaching it anywhere, because most of us have to learn it on our own.   I think of how much easier my life would have been if I had learned not to be scared of sexuality at a younger age.  I am not talking about sex necessarily, I am talking about intimacy.  Human connection is becoming so unnatural to us and I try to stop that process.

I started this kidneys and pinups website because of my appreciation for all things bad and good about the human body.  I took these picture because I see the inner workings of my body every day.  I get to see my blood exit my body and return four days a week.   I am covered in tubes and ports, and most days I feel very unfeminine.  It is difficult for anyone to feel confident in that kind of situation.  Taking pictures like this reminds me that I am a woman, that there is beauty in every body, and that even with my flaws, I can appreciate what I have.  You can even see my port in the third picture.

All pictures by Mi Amor Studio in OKC

These pictures were important to me to take before the transplant.  I wanted to have a benchmark of what my body looked like at this time.  I don't post them to be shocking (I don't think they are shocking at all-most magazines show more).  I post them so that we all can see the human body can be beautiful even when so much is going wrong inside it.  

Mom

On this particular night, I think I need to take a minute to talk about someone else who I want to make sure isn't forgotten.

My mother.

Eleonora Pagura, my mom, gave me my first kidney in 2005.  She gave me life, first of all, but then she gave me seven years, four months and about two weeks of non-dialysis living in my 20's.  This is a gift that I will never forget or downplay.  Even though my blood disease caused her amazing kidney to fail inside me, she bravely took this challenge on without a hint of fear.  Most of my courage comes from her.  She is an epic person to me, and I just want to make sure that in all of this new excitement she isn't forgotten or overlooked.

Mom, thank you for my late twenties and early thirties.  You gave me countless parties, late nights, and dance classes.  You gave me energy to do my thesis and start the beginning of my career.  You gave me time to enjoy amazing food and alcohol that I loved experiencing and days I could spend with friends.  You gave me late night talks in theaters and loud dangerous dance clubs afterwards.  You gave me the ability to travel to Italy and meet the amazing family we have there.  Your kidney allowed me to be healthy enough to marry Matthew and dance all that night, and you helped me be the kind of woman he would want to spend his life with enough to experience the very thing you did... just to save me.

For all of this I will forever be thankful to you.  Your gift was the most important of my life, and I will always have a piece of you.  That means so much to me.

I love you, Mom.

So what a day!  We got the news in the morning, and had to make a hundred phone calls to tell people the news.  And then our Facebooks exploded so quickly we couldn't even read them fast enough.  We had to put our computers down to get a break.  It was awesome.

So March 7th is the big date.  I have to be up there on the 5th.  I think they might be doing some extra procedures on me to prep me.  It isn't like my last transplant.  They may have to replace some plasma or give me extra Soliris.  Matthew has to be there the 6th, so we can go up together.  That makes things easier.  Well except the issue of getting there is complex.  Here is our dilemma:

If we drive up, both Matthew and I won't be able to drive the car back down because neither of us will be able to drive with our bellies sore and stuff..  So we need to take planes so his parents can drive him back here eventually and maybe I could fly back.  But if I fly back I need to set a date, and I don't want to set it too early.  I might need to have more Iowa time.  But too late, and I am stuck away from Matthew longer than we need to be.  Also, plane tickets from OKC to Iowa are soooo expensive!! Two small airports = airlines rob you.

I know, it's all tedium but the details are tough.  We aren't worried about it though.  I think we are willing to walk there at this point.

March 7th date means Matthew can recover over his spring break.  It's perfect!  I like the sound of March 7th.  By the time we feel better, it will be hot out again!  And I can bikini up my HUGE DUAL  TRANSPLANT SCARS.  Symmetrical and hardcore.

Also, my boudoir shoot got moved to Tuesday, so I am still doing it before the transplant.  Yay!  I will try to take my own pictures at the shoot.

Thanks for keeping tuned in to our drama.  It will all come to great use when the play gets written (it's already started!)

   

And the answer is...

YES!!!  Matthew Edwin Ellis is my donor!!!!!

Dates to follow.  Buckle up.

No one is laughing

Our home is truly broken.  Neither of us can focus on anything.  We snap at people, students, even each other.  Today was horrible, but I said that yesterday too.  And today was worse.

I saw my nephrologist today, and at least he postponed increasing the times of my treatments until next time I see him.  I think he knew how stressed we both were and how it might not help to increase our dialysis treatments by almost an hour each.  But my chest port is starting to get to that dangerous place where it has been in longer than it should and infections are going to be difficult to avoid.

Then my boudoir photo session was canceled.  This was the best distraction I could think of, but the weather was really bad up north and the photographer couldn't make it into the city.

There is also something else happening that I will post about later because it warrants a whole post...and just writing about might send me over an edge tonight.

What we heard from the Iowa coordinator was that the transplant doctor was looking over Matthew's blood pressure test and needed to consult a colleague before making a decision.  We weren't told which way he was leaning before he asked for a second opinion, but we can only assume the worst (it has become a habit for us).  So that was Tuesday and we didn't hear anything all day today.  Tomorrow is Thursday and hopefully someone is able to make a decision and pull the plug or take the leap.



So you can see, we need this to end soon.  We haven't just been dealing with this for a month.  It's been years and years.  Our hopes can't get higher and yet we couldn't be more ready to hear the worst.  Muscled tensed and ready to receive that kick to the stomach.  Or a box full of puppies.  Either way, stop the torture.

BRING IT.

 

Are you kidding?

So as you know, we have been sitting around for a week waiting to hear about Matthew's final test results.  We were told that we should hear from someone early this week.  Since the transplant committee meets on Mondays, I figured that meant Monday afternoon or Tuesday maybe.  But Monday came and went and no phone call.

Monday night I check my email and I get a message that says Iowa needs more records from OU, some unfinished results.  Anyway, I sent an email to OU Transplant and asked my coordinator to fax those to Iowa.  He promptly did this morning.  So now we are waiting again.  I can only hope that this means Matthew passed and they need EVERY test from me to move forward.  Otherwise it wouldn't have been important...right?  But I have no proof of that.  It's just a guess.  

So maybe one more day until we know?

AGONY

WARNING: GRAPHIC UNSEXY ENTRY

This post is going to be honest.  It's about side effects.  It's hard to be honest about everything.  Strangely, I have shared some pretty intimate details on this blog.  But most of that was emotional, and that stuff isn't hard to express.  For me, this stuff is what I don't like to tell people.  If you don't want your image of sexy, self-confident Tonia to change, then DO NOT READ ON.

When you are on long term medications, they will cause side effects that make your life difficult, yet unique.  For example, my immuno-suppressants cause many infections that I can't get rid of easily.  Fighting infections is hard for me.  For example, I have a plantar's wart on the bottom of my foot.  No big deal, right?  Well for me, I have been burning it with acid for the last three years.  When I say burning it with acid, I mean burning a huge damn hole in the bottom of my foot with a triple action prescription strength acid.  Then I walk on it all day and sometimes in heels.  It is agonizing.  Three doctors in, and no one will perform a surgery to remove it.  I take a razor to it every few days and perform a little mini surgery on myself.  One of these days I swear I am just going to take a bunch of painkillers and go to town, but I have to wait until I'm not on the blood thinners.

Other than colds and flu bugs that take over and kick me down periodically, I also have hormone changes that come with kidney failures.  I have completely stopped menstruating (a small blessing).   That led to other problems that healthy 30 year old women don't deal with normally.  Let's just say that 30 year old sexual peak that women get is wasted on those with kidney failure.

Along the lines of the hormone thing, one day this past year I was noticing my boobs were getting sore.  I thought maybe my period was coming back, but when I, um, examined....them, I noticed a white liquid came out of my nipples.  I nearly threw up when I saw this.  Yes, I started lactating.  Quite a bit actually.  Milk that I only assume must be the most rancid poisonous breast milk anyone could imagine was coming out of my body.  It could probably kill a baby, since most of my meds say DO NOT BREASTFEED on the bottles.

No, it didn't get worse when babies cried and no we didn't taste it.  It freaked us out.  I know I know, breast feeding is beautiful and perfectly natural, meow meow!  Yeah if you have a BABY!  MY boobs are not intended for that purpose.  When I asked my doctor about it, he referred me to a gynecologist (who referred me to get a mammogram and an MRI), who referred me to an endocrinologist.  Apparently endocrinologists are the busiest doctors in Oklahoma because of all the diabetes here, so I had to wait six months to get checked out by her.  She tested me more and after ten months of lactation I had an answer: Essentially the only thing that fixes it is a pill, or functioning kidneys.  Swell.

An obvious side effect that wasn't so bad was losing weight.  I have lost about 55 pounds since all this started.  I am enjoying that.  I always wanted to be thinner and I was convinced that the steroids and birth control were keeping me chunky.  Now I can't fit into my wedding dress because I am too skinny for it.  Great problem to have.  Although I did lose a little too much, the dialysis is helping my appetite come back and the transplant will make me gain a lot I know.

My favorite was the nose bleeds.  This turned into quite a spectacle.  My nose constantly had blood in it.  I couldn't breathe sometimes because it was clotted in my nostrils.  Sometimes I would get up in the middle of the night and blow my nose.  All I could see was a huge black splat on the white tissue.  Oh!  This is REALLY gross:  In the morning, I would wake up and blow my nose to see a long black "blood worm" as I called it.  It is a slimy blood clot in the shape of my nasal cavity.  HORRIFYING.  I thought I was seriously dying.

I got a blood clot after my infusaport surgery.  It wasn't diagnosed right away.  Actually I was the one that noticed it and told my doctor.  I was put on blood thinners just about permanently.  I am always at a threat of a pulmonary embolism.  I got the blood clot in August.  It's been six months and no end in sight.  I heard one doctor say it was "surgeon error".  I am not sure if that means the doctor that did the surgery screwed up, but I blame him anyway.  :)

Had enough?  There's so much more.  Vomiting out of no where.  Food would run right through me, as if my body couldn't take it in at all.  If it didn't come back up, it would rush down faster than I could eat it, helping with my weight loss I am sure.  One time I was just eating a piece of pizza and suddenly had to run to the bathroom to vomit.  I didn't have any warning or nausea.  We started keeping buckets around wherever I was.

Thrush.  This is horrible.  The first time I got thrush was in graduate school.  Suddenly nothing tasted good.  It was as if my mouth was broken.  I would think, "I really want a peanut butter and banana sandwich with honey" and then I would take a bite and set it down disappointed and confused.  I asked my doctor and she said I had thrush.  "What's that?"  She said, "Well it's like diaper rash in your mouth."  ..................  AAAAAAAAAAAAGH!!  Turns out it is a think coating of yeast that sticks on your tongue and inner cheeks.  You can actually PEAL it off at times.  You can smell it, you can taste it, and it is one of the worst curses I wouldn't wish on anyone.  Ugh, moving on...

Under the category of prednisone: thrush, mania, rage, insomnia, thin skin, face rash, extra hair growth on my face and back, and something called "moon face".  My face blew up to a huge size.  It made me crazy.  I thought I was so ugly, but my college friends kept insisting they didn't notice it.  Now looking at pictures it is pretty obvious.  

I wrote a piano song in graduate school called, "Italian Girl on Steroids"  These are the lyrics:

I'm just a pretty italian girl, on steroids
And it's a crazy crazy world, on steroids
If you look in my fridge you'll see an image of a jug, don't drink it!
It's Urine.  Don't reach for a mug, don't think it!
I have more beard on my face than I already did, 
and I tried to take it off with some Nair.
But instead I got a chemical rash
I'm so hideous it just isn't fair!
I'm just a crazy Italian girl, on steroids
And it's a crazy crazy world, on steroids.
(Instrumental)
So if I scream at you or call you a name,
it's the steroids, they just make me insane.
I don't want to be seen as a loon
I only hope I'll be off them one day soon.
Cause I'm a Pretty...Italian...Girl (big piano finish)
On steroids......
On steroids......
It's no fair-oids.....
Steroids.

One time, I had a strange plastic hair that kept growing out of my head.  Matthew had to take a tweezer to it because it was really painful.  I have to assume this was a side effect.

Migraines.  Many people have these.  They are terrible.  I had one that lasted two days.  The good think about migraines is when they go away, you get an endorphin rush similar to post tattoo.  You are just so happy the pain is gone, nothing else matters.

Then there was gout.  Gout happens when you have too much acid in your blood.  It hurts more than most things I have felt.  I had it three times in college and twice in graduate school.  I had to use crutches for three weeks.

Gall stones.  I passed a stone once before I had my gallbladder removed.  It was the worst pain of my life, worse than gout.  I have never wanted to die before.  But in the 35 minute drive to the hospital, I was wailing in pain.  I remember thinking I could just open the door and jump out to end the pain.  It really scared me, and I know Matthew was horrified.  

I couldn't climb stairs because of the anemia.  We would go three steps and wait until I got my breath back, then three steps more.  Some buildings don't have elevators, so it would just take me a long time to get places.  I would park my car, walk 20 steps and sit on a bench.  Then when it passed I would walk to the next bench and so on until I got to class.  I remember one time I was teaching an acting class and I stood up from my chair.  The room went completely black and I couldn't hear.  I had to stand still and wait until it passed before continuing.  I can't believe I tried to teach three classes like that.

Overall, the general "fog" that kidney failure brings you.  I can only explain it as this:  The world truly feels as if it is moving too fast for you.  You can't follow people's conversations, your reaction time is slower, you feel old.  In fact, I bet it is very similar to getting older, maybe a lot older.  Trying to follow conversations would tire me out, so I would have to tune out a lot.  Reading books was hard because I couldn't focus.  And I love reading books.

These side effects have been around for fifteen years now.  You get so tired that the side effects just become part of daily life, and everything becomes about doing the next thing the doctors tell you to do.  Or you call the insurance company to find out why they haven't paid for this or that, and will they please help you get a transplant?  That becomes your life.  It became mine.

After going on dialysis, many of those things got better.  The nose bleeds aren't as drastic (no more blood worms), I haven't vomited in two months (a record for me!), I started eating again, and no more thrush.  In comparison I am in pretty good shape now.  Well, good for me, maybe not for you all!  Now side effects include red eyes from phosphorus overload, when I stand up my heart races like crazy, charlie horses everywhere, and the lowest libido of my life (maybe the worst curse of them all) among others.

I haven't gone back to work teaching movement or pole dancing yet because of the blood thinners (if I fall on my head, I could die from internal bleeding), but I will someday soon.  Now I only have to deal with the dialysis side effects.  The crappy diet and the fluid restrictions, the embolism scares, and the wasted time sitting next to a machine are really not so bad in comparison to the rest of that stuff.  It's all just stuff and it's all just temporary.  At least I had this opportunity to understand how I want to spend my time when all this is past me.  And I will celebrate that time like the crazy thirty-two-year-old I always wanted to be. 

Binders

One of the most common questions I get asked is "How many pills do you take every day?"  This is a funny question to me.  I guess I forget that there are people that don't take any prescription pills at all.  I can't imagine.  I have been surviving on these chemicals for almost 15 years now.

The truth is I have greatly decreased the amount of pills I take every day.  Before dialysis these were just my morning pills:

It was frustrating because I wasn't eating much of anything those days and these pills were supposed to somehow stay down.  Two hours later I had my lunch pills, and then my dinner pills, and finally my night pills.  This is why I lost so much weight.  My body was so messed up from the toxins, I needed all these pills to lower or raise levels.  It is a snowball of crap that all of this helps regulate.

But I want to talk to you about binders (the biggest white horse pills in the picture above).  My body can't process phosphorus at all now, as I mentioned in another post.  If your phosphorus goes up, your calcium goes down.  When your calcium is down, your body starts pulling calcium out of your bones to compensate.  This leaves you with brittle bones, leading to easily broken or deformed bones.  My nurse told me there is a 30 year old that didn't take binders and she walks around with a cane now.  You get really stiff and can't stand up straight.  Well, phosphorus is in everything.  It is worst in processed foods, but it is also in dairy products, meats, and nuts.  Everything that seems healthy is probably bad for people on dialysis.  When I told them I like to eat apples with peanut butter, they asked me if I could eat apples with icing instead.

Huh??

I found out today that since my kidney died completely, my phosphorus has been out of control.  I have never had a kidney die before so I am new to it.  I was always able to control my phosphorus by barely taking binders, but today I found out that I need to take 4 every time ANYTHING goes into my mouth.  Sometimes I need even more.  Pizza is the worst thing I can eat.  I also found out today that if I eat one slice of pizza I need to take 6 horse pill binders.  6 per slice!!!  Can you imagine if I am really hungry and eat 3?  18 horse pills.  In one meal.  How on earth could I stomach all that?

I know this doesn't sound that bad to you all, but imagine this.  You have a chronic illness that causes you to have to attach to a machine 16 hours a week already.  When you aren't on the machine you want to be as normal as you can.  But instead there is a constant reminder that you are anything but normal.  Oh, you want a scoop of ice cream when you go out one night?  Make sure you get something to drink too because you need to take 5 big pills when you are done.  You don't get to forget, ever.  It follows you everywhere.

You think you want to drink to help cope?  Sorry, because unless you get drunk after one drink (and I don't know anyone that does), you can't take the fluid in.  Alcohol just sits in my belly when I drink it.  Because I can't pee!!  I haven't had more than one drink in a long time.  I know everyone has stress, but it helps to be able to be distracted from it once in a while.  Sick people have to deal with it sober and constantly in their faces for the most part.  As if the disease wasn't bad enough.  And some people do this for 30 years, in a clinic, from a wheelchair.  No wonder they are miserable.  I am so lucky.

Sometimes I wonder what will happen to me in 20 or 30 years when this next kidney fails.  I will be in my 50s or 60s.  I won't have kids to turn to.  Will I still have friends willing to donate to me?  As a 60 year old?  I mean, now I am in my 30's and everyone thinks, "Oh, what a shame.  To be so young and so sick."  But when you are 60 and sick do people say, "Well, she is 60.  It isn't that surprising that her kidney failed, is it?"  I know that is grim.  I try not to think that far ahead.  But sometimes your mind can wander...

We are still waiting to hear about Matthew's test.  Can you tell I am anxious?  This is the longest week ever.

*sigh*

Small World?

Ok, so we got the blood pressure machine!  Matthew is wearing it now!  The sob story worked, and we were able to pick it up this morning.  It is absolutely amazing because of this:

Melanie, the woman in charge of getting us the machine asked Matthew what he needed the test for.  He told her our story about the transplant.  She told him she gave a kidney to her 14-year-old daughter 11 years ago.  Matthew, being the smart guy he is, asked her if her daughter happened to have aHUS, because that is what I have.  She said, yes, actually she does (but hers is just HUS because she wasn't an atypical case).  She was a baby when the disease took her kidney, and her mother gave her one.  When Matthew told her that I have aHUS, she smiled and said, "Of course, it all makes sense now.  That is why you are having this test sent to Iowa.  You must know Dr. Nester!"  Dr. Nester is the amazing pediatric nephrologist who is working my case.  She studies aHUS as a specialty.  Melanie knew her and said she talks to her frequently!

So you can thank God, or the universe, or fate, or luck, or whoever you thank when things go right.  Because this time things actually did!!  (In this case I am thanking Melanie and Cindy from Oklahoma Transplant who "sold me her first born child" to get me on the top of the list.)

So tonight we ordered food so we wouldn't have to cook, I gave Matthew a two-hour massage, he fell asleep, and now he is playing video games.  He doesn't have to work tomorrow, so it is a nice, calm evening.

So send calm thoughts tonight.  Hopefully everything works out and we will know something soon!  

PS.  Just booked my next photoshoot!  More pinups coming soon!

Still waiting...

So here is what is happening with this "simple" blood pressure test we have been waiting on.  First of all, no one in Oklahoma seemed to know what it was.  Then we were referred to several different places that said they could get one but they all fell through for one reason or another.  Finally, our coordinator told us that Oklahoma Transplant could get one and we should get a call from a woman named Cindy.  Another week went by and no call.  Turns out Cindy was trying to get paperwork approved and needed signatures, and the fax machine broke one day.  I called Cindy myself and she told me the machine was going to come from a woman named Melanie in pediatric nephrology.  But that I shouldn't hold my breath.  Last time she issued this test it took more than a month to get, use and get results back.  I guess she is the only person in Oklahoma that has these tests and there is a huge waiting list for it.  

I am going to call Melanie and try to give her my sob story.  That I am waiting on a kidney transplant and this is the very last test before we get approved.  And every day we wait is another day using a very dangerous chest port that is prone to infections and blood clots.  And I have a life that is waiting on this test.  And I just want to move forward in some way.  And we are literally sitting here waiting for this one damn test while I am stuck on a machine four times a week sleeping next to the kidney that will eventually make all of this go away and bring me out of this dark and lonely time.  I don't know if it will work, because I suppose all the other people waiting have sob stories too.  

But a month to wait pushes this transplant to end of March and even April.  So much for temporary dialysis.

I just wish something could go smoothly.

  

New Pin up:

Too much kidneys, not enough pinup I say!

This is kidney failure

Ok, there has been some confusion about what kidney failure means, so I thought I would make a post explaining it in words that are less complicated than doctors might use. 

When my aHUS gets triggered, there are microscopic blood clots in my system.  They are made from my overactive immune response.  Those teeny blood clots can clog up my kidney and they caused it to have inflammation.  The inflammation made the kidney scar up and little by little it reduced the efficiency of my kidney.  When your kidney has damage, you don't get it back.  It doesn't regenerate or heal like the liver does.  Once the damage starts, it is limited.  So my mother's kidney got damaged from aHUS and it was beyond the point of no return.  We postponed the failure for four years using anti-inflammatory drugs like prednisone and immuno suppressants.  But I wasn't taking Soliris because we didn't know I needed it.

Once my kidney got damaged beyond redemption, I started dialysis.  What dialysis does is it cleans your blood and removes all the extra fluid that your kidney can't remove anymore.  A healthy kidney is doing all this 24 hours a day constantly.  It removes toxins, keeps the good stuff, makes you pee all the junk and extra fluid out, and releases epoegen into your bloodstream.  Epoegen stimulates your bone marrow to create more blood for you.  I don't make it so I have to inject it three times a week into my body or else I would die from anemia.  

I can tell how well my kidney is doing by how much I pee. At first, when my kidney started failing my pee turned clear.  That just meant that I was getting rid of water, but not toxins.  All the toxins were just sitting in my blood stream making me crazy and sick.  That is why I couldn't eat or function very well.  I was slowly being poisoned.  Now that my kidney stopped working completely, I stopped peeing completely.  I really hate it.  I feel like I have to pee all the time, and mentally I know I should have to, but then about one drop will come out and there is no release whatsoever.  Just like my entry on water, you don't realize how great daily activities are until you can't do them.  So I have to sit on my machine to get rid of all the water I am taking in.  If I go crazy one night and have a glass of water, I know the next day will be me sitting on a machine for hours taking it off again.  It hardly becomes worth it.  

Right now I am being dialyzed and I have only taken off about 1 liter in a little over an hour.  I went to a party last night and got carried away with the ice I was eating.  And I haven't dialyzed in two days.

So right now my native kidneys are in my back in their original spots.  They have been dead for about 7 years now.  I will have four after this transplant.  My mom's kidney just died this week.  So I have three kidneys and none of them are alive at all.  This was a hard week for me because I really thought I would be transplanted by now.  I never thought I would stop peeing completely.  I just thought this was temporary.  But here we are three months in and still going at it, waiting for news.  

Also, I have a lot of people who don't seem to understand the huge undertaking a transplant is.  It isn't something that you can do quickly or easily.  There are tests and tests and tests that have to be done.  You have to be 100% healthy to donate.  I mean nothing wrong with you AT ALL.  People with high blood pressure in any way cannot donate, people with certain past viruses can't donate, if you have depression they won't let you,  if you smoke pot or cigarettes they won't let you, there are tons of things to think about.  If you plan on getting pregnant in the future you should think twice, if you think you might want to save a kidney for a child you might have you should think twice, if you are overweight you might think twice.  Not to mention the recovery for the donor.  You would need to be ready to take a month off of work or school.  You would need to stay in Iowa for most of the recovery process, and you would need a caretaker for at least three weeks after the surgery.  I am flattered and overwhelmed by all the people who offer, and I am afraid most people don't understand the huge commitment it really is.  

Unfortunately sometimes kidneys fail.  My mom's failed in my body this week.  That is an emotional process for her as well.  She gave me an organ that only worked for a little over 7 (mostly sick) years.  7 awesome years in my 20's and 30's, yes, but just 7 years?  There is guilt and sometimes anger about it.  Some might get mad that I didn't take care of it well enough.  "I gave you a friggin' kidney and you went drinking last night??"  Well, ...yes.  It's my kidney now.  You have to trust that I know best what to do with my body.  There is a psychological process that goes along this for me too.  I have to accept that this is now my organ and it belongs in my body.  Or else my own guilt will make it feel unwelcome.  The doctors won't tell you that.  I call it good old Catholic guilt, from my roots.  But it took me years to identify it as "my kidney" instead of "my mom's kidney".   Mom's kidney didn't die because it wasn't an awesome kidney.  It died because my body attacked it for years.  

There are positive things about transplant too, of course.  It is emotionally one of the most amazing things ever to experience and it changes both the lives of the donor and recipient forever.  It is a true act of selflessness and a gift beyond words.  You get to save someone's life who will be forever grateful and connected to you until the day they die.

Again, I feel very lucky to have so many people who love me enough to offer.  Offering still means so much to me.  It really does.  I mean, Matthew might not work out, right?  And if he doesn't we will have to start at square one with the next donor.  

For now we have to (impatiently) patiently wait to receive the 24- hour blood pressure monitoring test that Matthew has been waiting on for three weeks now.  We learned he is an awesome candidate for me in every way.  I have NO antibodies against him.  That's amazing.  We're blood lovers.  I tell him that constantly just to remind him.  Blood lovers......mmmm.  As soon as we know what happens next, this is the first place I will post.  Thanks for keeping me in your thoughts, everyone.  It means more than I can express here.