Aurora's Blog

Picking up from Wednesday –

Before we move on to the next hospital, I do just want to say that as much as I’ve been angry and livid and crazy over my rejection from OSU Medical Center, I will say that I believe in the end, it actually did work out for the better.

I *don’t* agree with the reasoning of the transplant team members who rejected me. I *don’t* agree with the way they treated me – never giving me straight answers to questions, and getting frustrated at everything I said and did – even when what I said and did wasn’t outside the range of something normal to say/do/ask.

But, it was good that I had to lose that weight. Going to a state with lax laws regarding the weight I need to be was an easy way out. Even though I was still healthy when it came to my numbers (blood pressure, heart rate and all that), I think I’m probably a bit healthier now.

I think I’ll bounce back from surgery at least a little easier than I would have when I was heavier.

Weight wasn’t an issue at all in my rejection from OSU. Yet, I think that was really the biggest reason I should’ve waited. So, I guess I’m begrudgingly slightly happy that happened.

It’s almost not even worth mentioning any other reasons since that is far, far and away the biggest reason. However, I also will add that as much as I love so many people in Ohio, I’ve made it quite clear that I do better recovering from stuff in my own space. I don’t need people around me all the time.

While I think the people in Ohio would’ve been respectful – and, while, for all I know, it would’ve been loads of fun hanging out with them and playing Monopoly… (not to mention, while I so, so, so love to escape from L.A. whenever I have the chance) – I suppose there is something to be said for recuperating in my own room, on my own soft cloud-like mattress, with my own TV full of DVRed Jeopardy! episodes.

I think it’s a bit hilarious that the psychologist’s whole thing was I needed more support, yet her denying me has helped in my goal to have fewer people around. So, yay for me. Ba-bam.

(I mean, I think I generally make friends everywhere I go (even L.A., sort of ;)). I know people out here. So, I shan’t be lonely. I’ll still have plenty of people around to play Monopoly or Scrabble…)

So, I don’t think the psychologist was right. I will never think she was right. However, I do think that her wrongness still happened to probably work in my favor.

Of course it’s easy to see the positive side now, ’cause once you can’t change the outcome of an event, you might as well look on the positive side – since what would be the point in looking elsewhere?

But still, I’m choosing to look there. And I look forward to moving forward at a different hospital.

Speaking of hospitals, up next we’ll deal with UCLA. Wednesday I’ll pick up with one final thought on what’s happened so far.

Picking up from Sunday –

So, I was denied at OSU, which meant I could start over again. I’d just have to do it with another hospital. I suppose Cedars-Sinai (somewhat close to where I live) made the most sense.

The requirements at OSU and Cedars were different.

At OSU, I was well within the acceptable weight requirement to give a kidney.

While this is embarrassing… For Cedars, I needed to lose a little over 20 pounds before they’d even begin the process.

It’s so embarrassing to be fat – especially to be too fat to do certain things! So, it pains me to admit this is part of my story But I can’t escape the truth. I want so very badly to give a kidney to a stranger. I knew I needed to lose the weight not only for me, but for someone else.

So, I worked out harder, ate a lot smarter, and slowly but surely shed enough weight. Woo hoo!

I thought that that had to be the last hurdle… right?! I now had a much better idea of the importance of the interviews, and the amount of reverence with which they should be treated. I knew my medical tests would come back clean. So, we had to be all good at this point. Right?

Wrong.

After Cedars took a couple of weeks to look through and process my initial paperwork (with medical records from my heart surgery), they called to let me know their surgeon would not work on someone who’d had as many heart issues as I’d had.

They were nice about it. They let me down easy. They said, “Our surgeon is just very conservative. Just because we can’t take you doesn’t mean someone else won’t. We’d recommend trying with another hospital.”

Aye, aye, aye. Another one.

Well, at least this time I only lost a few weeks, and I didn’t have to endure any extra tests…

I did have to fill out what seemed to be a fairly large amount of paperwork – medical history, information about who was gonna take care of me, results of 3 blood pressure screenings …

So I guess I did have to have a tiny bit of non-exact testing that can be done at oh-so-many locations (not just doctors offices or labs) after all. But it barely counts, since it’s so convenient, non-invasive (and free).

But it’s all good. It was disappointing, since I felt like there was mainly one thing/person who held me back at OSU. Without that I thought it’d be smooth sailing. But when is life ever what you think?

Forging on to UCLA!

Picking up from Wednesday –

Finally, in her last paragraph (the impressions paragraph), she said I was unaccompanied to the appointment (again this is being mentioned!).

In all seriousness – as a legitimate question – I’m wondering how people knew to bring other people. Since when do I bring people to doctor’s appointments? I’d had a million tests leading up to this. No one had to come to those. How was I to know I was supposed to bring someone? I can’t believe how many freaking dings I got just because of this. Eeeeeesh!

She just reiterated all the things we’ve already been over and ended with “It is not recommended that she proceed with non-directed donation at this time.”

*sigh* Even reading that sentence after all this time hurts a little. I remember how upset I was when it happened.

And I hope this story has really upset you too!

Now, because I get so wildly riled up about it, I’ve had some friends – honestly even a friend of mine who actually needs a kidney! – say that “oh, maybe she’s not so bad… I mean, you are kind of intense, etc. etc.”

And that is true! I am intense. It’s a word used to describe me all the time, and I believe it’s true. Sometimes that’s a wonderful quality when it comes to goal-setting, and focusing, and getting things done. And sometimes it’s not as great when you overwhelm people…

And I get it. And I think I’ve played devil’s advocate here before. So I don’t want to retread stuff too much.

But my main thing is, if the only thing she’s supposed to do is make sure I’m mentally and financially capable of doing this, then make me provide bank statements, or tax returns, or something.

Make me take a test to make sure I can be considered a mentally competent person who knows enough about kidney donation and possible complications and things. But please don’t twist everything I say and make me feel like I’m in this awful game.

This was an unbelievably horrendous experience for me. And I think many people would quit. After all, why in the world go through all this again?

But all this has done has made me more sure than ever that I desperately want to be a living kidney donor! (I will be.) (And there actually are bright sides to getting denied by OSU Medical Center.)

So, let’s try again. And let’s talk about it on Wednesday.

Picking up from Sunday –

Even though she thinks my range of intelligence is “average,” at least she said attention was good and recall was good (there’s that important memory stuff I was telling you about).

She said “psychomotor behavior was agitated.” Well, yeah! I’d say so. She had to at least be trying a little to goad me.

Right? At least a little? Because no one – especially a psychologist who should be in tune to human behavior – can treat me like that, and say the somewhat ridiculous things she said, and not be at least somewhat aware that you are agitating the other person. Right? Maybe?

In the mental status section, she said I had a nervous laugh. I absolutely cannot argue with her at all on that point. I’ve noticed it in every interview I ever see of myself. I laugh at things that really aren’t funny, ’cause I’m a little nervous – every single interview I can think of. So, she’s right. No argument. I’m working on changing that habit.

I laughed out loud at this part, “Patient was adequately groomed, but presented to the appointment in pajama pants which is socially abnormal behavior, as a healthy adult.”

I think I misunderstood the day. I was going into it thinking it was going to be a very long day starting very early in the morning with lots of various tests (meaning I’d have to take my clothes on and off a lot during the day – and pajamas would be the easiest way to do that).

And actually, that’s exactly what the day was! So, I was sort of right on.

However, I did not realize that these interviews were intensely serious business, and that I needed to dress as though I were going to a job interview.

I just did not know. My whole previous experience with medical stuff had been so unbelievably long and involved that I thought I understood the hospital world, but goodness did I learn that I do not.

I wish I would’ve known to approach this differently, but at least I know for next time.

The psychologist did say my mood is “euthymic with broad affect.” My understanding is euthymic just means kind of in the middle. It’s not too excited. It’s not depressed. It’s just a normal, at least semi-pleasant human being.

And I understand that broad affect means a normal range of affect, with affect meaning expression of emotion, or feelings, displayed to others (with emotional signs such as hand gestures, facial expressions and such).

So, yay! One point for me, ’cause at least she things I’m semi-normal…

Of course, in her next sentence, she says my “judgement appears to be questionable.” My immediate reaction to that when I read it was “hey!” But then I thought, “well, I live in Los Angeles, so my judgement must be at least somewhat questionable, right?” (ba-dum-cha!)

And this is where we’ll pick up on Sunday.

Picking up from Wednesday –

The psychologist talked in her notes about her concern with not wanting people to visit during recovery. She said: “[Aurora] demonstrated some lack of insight into how her surgery may impact her family and other who care about her.”

Okay. I kind of, sort of, get what she’s saying. But the people who care about me know me! They know this is me. Even though a lot of people thought I was a bit crazy at the beginning (I think due to shock more than anything else), people totally got on board and understood it. And they were cool about it.

People would be fine. I don’t want to say her concerns aren’t valid. I do understand that surgery can affect families. Of any concerns she’s had, I’d say this is probably the most legitimate. But I also think that I’m more independent than she thinks, and that the people in my life are
a) more used to that than she thinks and
b) stronger than she thinks.

But I suppose that would be a question for my friends and family – not for me.

(Although in the end, even though I wildly care about some people, it doesn’t actually matter how they feel about it. Because ultimately it’s my body, my life, and my decision. People can be worried if they want. I will still love them and try to be kind to them. But that shouldn’t affect if I can give a kidney.)

There’s a whole compliance section in here. And the psychologist said that I mentioned the day I went home from open heart surgery I attended a recording session for my college class and “did not rest as directed.”

That wasn’t at all what I was trying to say when telling her that. She was saying I was going to need all this help in recovering. And I was just trying to say, “Hey, the day I got out of the hospital, I was in the studio. I’m gonna be fine.”

I wasn’t trying to say I was a big rebel. I was trying to say I’m strong and capable. Ugh. At least I know for future reference, that story apparently works against me, rather than for me (in this medical sense at least – I think it works well for job possibilities and random story times when getting to know people … but it’s not good for psychologists, it seems).

Her notes say I have an average range of intelligence. Ouch a little, right? I’m in Mensa, and people tell me sort of often they think I’m smart. So that stung a bit. How does she even gauge that? Whatever. I don’t care. It’s a small point. It wasn’t an IQ test. She can think I’m however smart (or dumb) she wants to think I am.

And honestly, if I couldn’t read her, and I couldn’t figure out how this all works, and apparently I gave all the wrong answers – then maybe I’m not nearly as smart as I think I am!

I’m learning that seeing other people’s perceptions of me can be a bit rough. Eesh…

I’ll pick up here on Wednesday.

Picking up from last week –

We were talking about how annoyed the psychologist was with my “provocative comments” about mentioning The Price is Right but saying I wasn’t supposed to… So, picking up where I left off trying to explain myself –

I honestly just wanted to put her mind at ease (since *she* was the one who seemed so nervous, even though they sort of act like I was a basket-case…), but I couldn’t outright say that I was about to net some extra thousands of dollars to help pad my finances a bit.

I was trying to be cute! Maybe that’s the lesson. Never try to be cute.

Plus, I genuinely was really excited. I really was. I’d dreamed of playing that *exact* game on The Price is Right since I was a little girl. And we were getting close to my episode date. And I was telling everyone to watch – strangers on the plane, the front desk people at the gym – everyone!

Maybe that was wrong. I felt I couldn’t help myself. Most people seemed excited for me. But after reading these comments in the psychologist’s report, I can tell I was actually probably annoying a lot of these strangers. And that makes me feel awful.

But for the record, I wasn’t trying to be provocative. Again, I was trying to cut the tension with something fun. I was trying to ease her mind about finances. And I wasn’t trying to be all “oooh, this is such a big secret, I’m so provocative.” I just truly was only allowed to say “watch the show.” I couldn’t say anything else under penalty of death (hyperbole, a bit) because of that CBS contract.

I will also admit that I did mention it in my talk with the social worker as well, ’cause they asked if I got anxious or had fast heartbeats. Again, I was so obsessed with cutting the tension and trying to be cute (which I should’ve just realized was absolutely never going to happen), that I said something like, “Generally no. But it’s possible I was anxious in one of the few situations where it’s completely allowable. DVR Price is Right to find out. *wink*… No, but seriously. I’m good. I’m not anxious. My heartbeats are fine. *genuine smile*”

Was that over the top? Looking back on it, yes. Was that totally annoying? Yes. I can see that now. And I’m honestly very sorry. I was absolutely not trying to be a jerk. I was just way too excited about the show, and way too nervous about cutting the tension. I see I took it too far. And for that I’m really sorry (even though I guess that doesn’t really matter now…)

And I’ll pick up here on Sunday.

Picking up from yesterday –

The psychologist also said I made a point of making “provocative comments”

– ‘e.g. talking about a television show she will be on, though she prefaced it with the fact that she was ‘not supposed to talk about it’.’

Look, let me take a breath for a sec on to say that when I was first reading through these notes, I was just mad (about so many things… the rejection and not feeling heard and all that jazz). But as I kept reading, I actually started to feel bad.

I really do.

I do not want to be the kind of person that people put up with when I’m around, and then talk behind my back about how annoying I am.

I am totally aware that I’m sort of loud, and I’m really outgoing. Sometimes I can be a bit much. Even my closest friends say I’m intense (which I actually take as a compliment and most of the time view as a good thing).

However, I know I can be the sort of person you need a break from. I try to generally keep things to normal fun human level, but I understand that I can be a handful.

In fact, just recently, when my dad was telling me a story about when I was a little girl, I said, “Gee, I sound like such an adorable handful.” And my dad said, “I don’t know that a more accurate description of you has ever been uttered… except it might be more than a handful. You’re like two handfuls.”

So, I get it. But, some people like the outgoingness. I try to keep a balance. But geez. I don’t want to be so annoying and so story-telly that people cannot stand to be around me. So I feel bad!

(Genuinely, I feel bad.)

She also said my comments were “mostly tangential from any direct question that was asked.”

…But in my opinion, I didn’t bring big things up for the fun of it. I brought things up because she asked me. When she asked about my hobbies, and I said running, and she asked me to elaborate on running – I’d recently finished my big project. To me, it made sense that the 52 half marathons came up. But apparently not to her.

The Price is Right thing came up because she was really not letting go when it came to finances. She seemed extremely concerned that I wasn’t working at the time. So, I tried to – in sort of a cute way – kind of imply “well, if a nice extra chunk of money were about to come into my life, that might put your mind at ease… of course I can’t give specifics as to what I won. But just DVR TPiR. *wink*”

And we’ll pick up continuing this thought next week.

Picking up from Sunday –

Finishing out her summary, she does say in here, “patient reports that she would rather do anonymous donation so that the transplant outcome is unknown to her.” So, apparently she did hear that, even though earlier in this very same document she implied I was on the fence as to whether I wanted to do an anonymous or directed donation.

So, basically I don’t completely and totally trust their perceptions of me if details are changing a little throughout the document. I know it’s small stuff. But if we’re soooo professional here, and we can’t cut any tension or have any fun, then shouldn’t we be getting all the details right – even the minuscule one? I’m just saying…

(Okay, I mean, I’m nit-picking and being a little unfair at this point. That really was a small thing and no I’m being a bit too attack-y just in my anger… So, moving on.)

Basically, her summary at the end of the document was that she was wary because of the things I talked about earlier in her report…

And now let’s get to (dum dum dum – scary chords) the psychologist.

In her very first paragraph she again mentions that she’s nervous about me wanting to be liked… She states in here that I made multiple comments about wanting to make people proud of me by donating.

I am genuinely sorry if it came across that way, but I would be willing to bet money that I never actually said that. I’m actually genuinely confused, curious, and a little concerned about how she could get that impression.

I want to be proud of myself. I want to change someone’s life. But in absolutely no way am I doing this to make anyone proud of me. Who would be proud?! My dad is nervous and thinks I’m a little crazy. (Granted, that’s his reaction to a lot of my various adventures… but, you know, in a very fatherly/loving way.)

So, I’m sorry if anything I did made it seem that I was doing it to make someone proud. But that’s so silly. I am absolutely only doing it to try to help someone get out of the hospital lifestyle. I remember how inconvenient and not great it was. If I can keep someone from living that life, then that’s what I want to do!

That’s it. No hidden motives. No nothing else. And I’m sad if somehow I said something that made her feel differently.

All I can hope is that she really wasn’t listening all that well – or that she was projecting or something. Who knows.

We’ll pick up more with what she had to say on Sunday.

Picking up from Wednesday –

Now we get to her summary and recommendations. She mentions in here that I said, “I just want you to like me… I just want us all to be friends.” And she mentions it as though it’s a genuine concern that she has.

Now, when you see that sentence in writing, I think there are so many ways you can take it! It sounds as though she took it as a genuinely scared wide-eyed girl hoping people really liked her.

I meant it as a “I’m trying to have fun and cut the tension in here. I’m gonna give one of my little shoulder shrugs with the smile like ‘haha. Let’s all just get along *smile*” But no! The tension is *never* allowed to be cut in that room.

I’ll admit, I was nervous. But I don’t really care one way or another if this social worker actually likes me outside of this weird little context. Why would I care? All I was truly nervous about was that this interview would decide for another human if she or he would get to live!

Seriously. That’s not hyperbole. Kidney transplants are actually life and death. If I failed this interview (which unfortunately I did), more likely than not, someone was going to die. Even if they didn’t die, their life would stay in this trapped phase, which was what I really wanted to help save someone from.

And that’s a lot of pressure on an interview!

What’s weird is I consider myself great at interviews. I get almost every job for which I score an interview. I call myself “great in the room – just get me in the room. I’ll get the job.” And most of the time that really does happen.

Employers commend me for my demeanor! I’ve been called “adorable,” “fun,” “a light in the office,” “a pleasure to have around.” I do not say those things to brag. I just say them because my perception is so off! If I’m getting jobs and people say I’m a great interviewee, and I’m getting all this positive reinforcement – then how is everything I know about myself wrong?

How is a skill I truly believe I have just totally not there?

I didn’t act any different in this interview than I do in others. I actually said in early job interviews, “I’m a little nervous.” (I don’t say that so much anymore, ’cause now that I’ve done so many, I’m generally less nervous.)

But back when I did say it, I’d make a semi-silly face with a big smile as I said it. I’d say it in a (hopefully) fun way, while I tried to befriend the interviewer… And it worked! It always worked!

It broke tensions. We had a little laugh. We talked about hobbies the interviewer had, and we moved on. So, if that’s what I always understood to happen in interviews… why wasn’t it happening here!?

And this is where I’ll pick up on Wednesday.

Picking up from Sunday –

Under cognition, they clicked “noticeable impairment of:” Then they added in that space “denies impairments of memory, but inquires… ‘Why do you ask about memory?'” (That was after they’d asked me something like if I had a good memory.)

Just for the record, I wasn’t asking because I have a bad memory. I actually was asking because I get complimented a lot on my memory. I love being able to remember things. My memory is important to me. I hadn’t heard any specific risks when it came to memory, and I was just curious why they were asking the question – if the surgery could affect my memory, or just why that question came into play – if it’s anything I need to be concerned about.

And if anyone could’ve ever answered any of my questions with just simple straight answers instead of getting immediately defensive and answering back every question with a question, then perhaps some of this could’ve been avoided!

And if they were worried about my memory, why didn’t they just give me a memory test instead of asking me if I have a good memory? That would’ve been way more conclusive no matter what my answer had been.

In the mental status exam portion, they said my mood was euphoric. So, that’s interesting, I guess? I certainly didn’t freaking feel euphoric with them.

They also said “affect was inappropriate at times”?!

The dictionary says affect is “emotion or desire, esp. as influencing behavior or action.” They didn’t give any notes in that section. So, I don’t know why they thought my emotions or desires were inappropriate.

(Sure, I can be “inappropriate” sometimes (can’t we all? ;)), but I don’t think they meant in that way – and I certainly wasn’t inappropriate in that way in the interview.) The point is, I don’t know what’s going on in that section. Sigh. Moving on.

They also said my insight was fair. Well, at least I got a fair. That’s still not good. (I don’t know where fair falls on their little psych scale.) But I suppose it’s better than “poor,” which I assume is on there.)

Then there’s a bottom portion that says “phychosocial concerns.” And this is where I could tell that I don’t think they totally listened to me. It says, “Patient initially flew to Ohio because of a person she met on matchingdonors.com; however, she is not a match. Patient now unsure whether she would want to pursue paired exchange or non-direct donation.”

Let me tell you, patient is sure! Once I knew you could give to a stranger, I absolutely wanted to. I don’t want to pick the person! I am sure of that. So, I didn’t like that they made it sound like I was on the fence. I did adore that guy I was being tested for, but I’m sorry to say I can’t jump in a paired exchange with him. I’m letting fate and UNOS take me wherever I need to go…

They also mentioned “Patient describes situations that involve impulsive behavior.”
As far as I’m concerned, that doesn’t make me crazy or irresponsible. That makes me fun.

Another thing they said: “Patient has a history of job transitions in a short amount of time… endorsing a history of impulsive decision making.”

That is actually not impulsive decision making. That is just my industry. That is how my employment works. I work a show. We go on hiatus. I work another show. I’ve returned to future seasons of some shows. I’ve returned multiple times to the same companies for other shows, even if the show I started on ended.

It’s not like I never make my way back to working with the same people…. But working on a lot of different things doesn’t mean I’m impulsive. It means I work in entertainment… and thankfully, I actually work!

Finally she mentioned recommending getting a strong support system… yet again. Eesh.

This is where I’ll pick up Sunday.

Picking up from Wednesday –

During the course of this story, I’ve mainly been talking about how I perceived what the medical professionals must be thinking of me. But now since I got my medical chart, what say you we go through it together?

First up, we have the nephrologist’s report. Nothing to write home about here. It basically says, ‘healthy white female seems genuinely interested in being a living kidney donor. She understands the risks, wishes to proceed, and I see no medical reason why she shouldn’t.’

We’ve got some papers with tons of numbers about blood pressure, blood tests, and all that jazz. (Oh so many papers. Oh so many tests.) Everything looks lovely on that.

As far as the paper on the chest x-ray, everything looks beautiful (except “3 sternotomy wires are noted in place.” It’s fine that they’re there, but you know, they can see them…)

CT angio looks great. My kidneys are about 11 x 5 centimeters, in case you’re curious.

And now, the moment we’ve been waiting for… What did the psychologist and the social worker say?

First, there’s a little check list. The second thing on the check list is “presentation.” And they check the line marked “alone.” Then they put an explanation by it!  (They say I didn’t want my dad to take off work.)

That is true that I wouldn’t have wanted him to take a day off work, so that’s what I said on the spot when confronted about it. However, it didn’t even occur to me to ask him to come. No one told me to bring someone! How was I supposed to know?

I didn’t know I was going to get dinged because I didn’t want to drag someone to a day full of tests and interviews where he would’ve sat around and done nothing. Why would it have dawned on me to bring someone?

If it was that important to them that I show I have people in my life, why didn’t they let me know? I’m sure I could’ve brought someone had anybody mentioned at any time that bringing someone was important.

In the employment section, it says “patient is currently unemployed; previously worked as an assistant editor for a television show.” While I agree that that is a truthful statement, it’s not like “oh, at one time I worked and now I’m out of a job with no prospects.” This is my life. I work. Then I don’t. Then I do. Then I don’t. There’s always another job on the horizon.

I know I’m being a little too sensitive about how they phrased it, but because they kind of gave me a hard time about it, I am sensitive about it.

And we will get into oh so much more next Wednesday.

Picking up from last time –

First a small thing that was bothersome – I felt like after I got my rejection, I was constantly seeing commercials for Donate Life. And there was a little part of me who wanted to jump through the TV every time I saw one! I’d think, “I’m trying here! I’m trying so hard.”

I know those commercials are just commercials, but it felt like this whole thing was being totally rubbed in my face every time I saw one (which seemed to be all the time…).

Another things that was sort of hard for me was hearing the stories of the people I’d met at Big Kidney Day. I kept in touch with two of them. And I was so happy they got to give their kidneys. Really. I’m wildly happy for them that it worked out.

But just because I’m happy for them doesn’t make it any easier to hear about how it was such an incredible, enlightening, amazing experience. They talked about the recovery not being bad at all, and the rewards being plentiful – feeling amazing and loving seeing the improved life of the donee.

All of that news is so wonderful! And it makes me believe even harder in kidney donation. But gee, was it a bit hard to hear – especially when I was hearing some of it while I was still in my mandatory 3-month “cool down” period – and they were giving kidneys.

I don’t want to sound selfish or needy, but there was a part of me that felt a little left behind and “why am I not good enough, but these people are?”

I’m sorry I’m maybe not explaining it well. But it was a little tough. That’s all.

Next time, we’ll get into my medical chart!

Picking up from last time –

I put “the aftermath” in quotes in the title because this whole thing really isn’t over yet. Is the eye of a storm the aftermath of it? But, this is the aftermath to kind of the first chunk of it all.

There were some various things that were hard for me to deal with after the first rejection.

I continued getting emails from MatchingDonors.org. I tried unsubscribing yet it proved unsuccessful. (You know those lists you get on and you feel like you’re never gonna get off of? :-P)

I was even called once to ask if I’d get tested to see if I were a match for someone. On the phone, I said, “Thank you for your call, but I’m really no longer interested in going through MatchingDonors. Can you please take me off the list?”

I haven’t gotten any more phone calls, but the emails still come sometimes. At this point, I’m not even worrying about how to more successfully unsubscribe, because I almost like getting them to remind me of my anger. I don’t (at all) want to be an angry person. But I do want to be a driven person fighting for what I believe is right. And my fight to give a kidney will not end until I have donated one.

I don’t really need reminders of how important this is to me. It lives with me every day. But I don’t mind getting those emails – just to give me a little extra push.

So anyway, these emails! Oh the emails.

They pick out a specific O positive person who’s looking for a kidney, talk about them a little and ask me to get tested since I could be a match. And the people in different emails are from all over the country. The emails state the all of my travel and everything would be paid for.

Sometimes I just want to break down and say, “it seems as though things would be so much easier through this site!” I don’t know if they would be or not, but my perception is that hospitals are partnering with MatchingDonors, and the hospitals perhaps actually want to help. And maybe if I had this company (MatchingDonors) fighting for me, my journey would be easier? I have no idea!

But there’s definitely a part of me that says, “this seems simpler, cheaper, and easier.” But there’s a bigger, louder part of me that says, “You cannot just decide whose life is worth more than another’s. You just do not want to do that. You have to go the blind route so it’s given to whoever has the highest need.”

(Plus perception is so often wrong. From the outside looking in, it seems like things have to be easier with this big company which seems to have ties to tons of hospitals, but maybe it’s just as hard. Heck, it could be harder! I don’t know.

I do know there were a couple of other rough things to deal with. And I’ll get to those next time.

Picking up from last time –

Of course the people who should be the most angry are the ones personally and deeply affected. And I’m aware that money is in no way as important as human life. However, while we are talking about people who should be so mad…

You know who else should be angry? Whoever is paying for all these tests! They did thousands of dollars in tests in me. I had x-rays. I had a CT angio with contrast. I saw doctors. I had blood draws. Those things are not cheap.

When you’re trying to be a kidney donor, you don’t pay for anything. They didn’t even take my insurance card. It was all free to me. So who’s paying? Is the hospital? Are patients eating that cost? Are people eating that cost in insurance premiums? Is it tax payers?

My understanding is that if you’re getting tested for a specific person, the tests are covered through that person’s insurance. But when you give to a stranger, who’s paying, then? And why was that money wasted?

Why didn’t they think to perhaps do the easier (and I’d assume less expensive) things, such as the interview, first? How do they decide the order that makes sense to go in?

All I know is somewhere along the lines, someone, somewhere lost a lot money. And that’s another thing to get upset about.

And while we’re already on this roll of being upset, let’s talk a bit about the aftermath (or the aftermath thus far) next time.

Picking up from last time –

Obviously, I’m mad. This whole thing was pretty wildly upsetting to me. But I can’t even begin to imagine the amount of anger I’d feel if either I needed a kidney, or someone very close to me needed a kidney.

But no matter how much I care about people in general, or the idea of human life – I will not pretend that I can feel quite the same amount of anger as someone whose son (or whose anyone they deeply care) is on the transplant list.

I do not have the same personal, visceral upset-ness that someone who is lying in hospital bed waiting for a kidney would.

I try to imagine myself in their shoes for a minute, and I just think, “How angry would I be?!” I don’t even know what kind of mix of anger and disbelief and sadness I’d have.

But I had no idea that this process would be made to be so hard for someone to give a kidney, and I think it’s possible that other people don’t know either.

When I got my rejection, part of me desperately wanted to say to them, “Okay. Go upstairs and tell someone – tell a family whose person is barely hanging on that that person doesn’t get a kidney, because I’m too much of a free spirit, or I’m not afraid enough, or you didn’t like me, or whatever basically crap reason (yeah, I said it!) you’re giving here. Go tell them! And let me know how that goes over.”

I don’t want people to get angry. I know it’s not a great emotion… But I do want people to get justice! …And sometimes justice is born of a mix of anger and disbelief. I will become a living kidney donor. So, at some point, I will do my part, and I suppose my “personal justice” or however you want to think about it will be gotten.

It’ll be for a different person than it could’ve been. It’ll be at a different time than it could’ve been (and I don’t know if it can be quantified as ‘good’ or ‘bad,’ as for the person who gets, it will be good to them that it didn’t work out for me the first time… but sadly, in the meantime, someone died while waiting. So obviously that was horrific for them – it’s all just so wrought with so much emotion everywhere for many people…).

But for me, it will happen.

However, how many people get clogged up in the system over stuff like this? How many people give up after something like this? This process has certainly made me oh so curious… (But maybe other people have a simpler time and I’m just a weirdo. Possible! But there’s no way I’m a one and only one time outlier, I wouldn’t think.)

Next time, I’ll pick up with one more group of people who I believe should be totally livid.

Picking up from last time –

The final thing the nurse explained to me was of course the thing we all knew, based on my story, was going to totally bite me in the butt.

The psych team thought I didn’t have enough support to take care of me and such after surgery. What’s funny is I could’ve easily given them phone numbers of at least 10 people who would’ve checked in on me. I had multiple people willing to let me stay with them, even.

It’s just annoying that basically because of some misunderstandings, they just decided to think what they wanted to think instead of clearing up anything. I stand by the fact that I still think it was a totally reasonable question to ask why someone needs to be there during surgery.

I’m telling you, if it’s just someone there just to be there, I’ll ask a friend who doesn’t work that day. If it’s my medical power of attorney, I gotta ask my dad to take off work. The person is different based on the purpose, and I just feel it was a question I should’ve been allowed to ask – even if it’s the very question that made them feel they needed to reject me for “lack of support.”

If you want to know officially what the follow-up rejection letter in the mail said: “the Patient Selection Committee does not feel that kidney donation is suitable for you at this time, due to: your psycho-social status financially or emotionally related to non-directed kidney donation in a state far away from your permanent residence.”

The funniest part about that is that the people who matter very most in my world and who literally would walk through fire for me if necessary… they live in Ohio. So, it’s just interesting to me that in trying to turn me away so I can go to my permanent residence and get all that amazing support they’re talking about, they’re actually just turning me away from all that amazing support…

(I will say this might be better for me because I won’t feel smothered… But while I might personally like it better to be away from my “strongest support system,” the psych team is still kind of accomplishing the opposite of their goal.)

I calmly explained a lot of what I told you (trying to prove all these points invalid) to the nurse. She said, “I had the feeling that you were just being your usual, quirky, outgoing self.”

So, let it just be known that I was not the only one who thought I was just being (pretty fun, if I do say so myself) me. Someone else thought it. So it can’t completely live only in my own perception and nowhere else.

She said central Ohio is not as cosmopolitan as L.A., and she encouraged me to try again out here.

I know that medical stuff isn’t a bed of wild roses all the time.

I know I’ve said this before – and I’m sorry to repeat myself – But honestly, I was just so flabbergasted by such an incredibly stark difference between the way the social worker treated me at Mass General (making me feel like a very heard person whose thoughts/feelings/opinions matters) and the way the social worker/psychiatrist treated me in Ohio (making me feel like I had to fit into their box and if I had any questions or opinions, I was the absolute worst), that I just can’t get over it…

Let’s talk a little more tomorrow about some people who should be mad. (I’m thinking basically everybody, but I have some specifics in mind.)

Picking up from last time –

Someone on the psych team also mentioned they were worried that I go on unemployment sometimes, as it could be denied if I’m unable to work.

I seriously can’t believe unemployment was made to be this much of a big deal. I mentioned it because I was being pushed for something stressful. (And you know if you’ve ever filed for unemployment in California that it is very stressful.)

But I think it’s interesting they act like it’d be a big deal to go without unemployment, because do you know what would be a bigger deal? Going without actual paychecks (for the people who need kidneys/need to get back to work)! It would be much easier to go without unemployment for a few weeks than it would be to take time off work and go without your real paychecks (since work pays a whole lot more).

(And this hypothetical is assuming you’re going to file for every single week you’re out of work. There’ve been times when I haven’t filed if I’m only out for a short amount of whatever.)

Now, I do understand that some people’s jobs have actual paid vacations. So even though, to me, every time I take a day off work I miss a day rate… since I do understand the concept of more mainstream jobs, I get that people do go in there and say they have vacation time saved up… which is why I probably sounded different to the psych team.

I think instead of looking at it as a bad thing that I go without work sometimes, it could be looked at as a positive! I’m some ways, I’m sort of more free.

Usually you’re cleared from kidney surgery to go back to a desk job in two weeks anyway. So, I’d miss $900 for two weeks? Heck, I’d lose like half of that just going to and from Ohio. They shouldn’t be that concerned over $900.

I understand that because I’m angry and I’m talking in an angry tone, I am being slightly ridiculous about money. I don’t want to sound like someone who doesn’t understand the value of money, or who doesn’t appreciate money she often gets between jobs.

The safety net is very appreciated!

All I’m saying is, I can carve out a couple of planned weeks in which I don’t get any money from anywhere and still survive.

Sigh. I feel like I’m talking in circles here. All I’m saying is, if you’re that worried about my financial situation, make me show a bank statement or something. Heck, I was a couple of weeks away from selling a brand new car. I could’ve used some of that good fortune to pay for the opportunity to help someone in a way I really wanted to help them.

I just didn’t like how unemployment seemed like such a dirty, terrifying, and ridiculous word at this place. It is SO a part of life of practically everyone I know, that I didn’t know how it is apparently viewed in the “real world” (or at least the midwest world).

There’s a disconnect in my brain. To me, unemployment doesn’t say “sound the alarms! You’re poor. In trouble. A delinquent. Awful. You’re not fit to give a kidney!” It just says, “you’re between gigs and that’s oh so normal.”

I’m annoyed that they seemed to have heard that word and shut down instead of trying to clarify anything.

So I’m gonna just stop talking about this and move on – this Wednesday.

Picking up from last time –

I was admitting that I could sort of,maybe, kind of see the wanting to be liked angle of it all – especially since I’m keeping a blog so some people will see I’m doing this.

But truthfully, the only reason I even wanted to blog about the journey was because I thought being a living kidney donor was going to be this awesome, fulfilling experience. And I could show the world that it is such.

There was a time when I didn’t know you could go be a living kidney donor to a stranger. I thought talking about it might spark interest in someone else. And I liked the idea of that.

I also generally share my life on this blog. Sure, not every single detail. But something like this – I feel that that’s generally the kind of stuff I share with you.

The point is, I’m not writing about kidney donation because I think, “these will be the posts that will make people love me!”

I get it that I have some insecurities. I’ve certainly talked about youth and beauty enough on this blog that you know I worry about that kind of stuff. Sometimes I even make fun of myself and my insecurities a little. I think I’ve even captioned a picture something along the lines of, “It took 2 hours to dress up like this. Please validate me.”

And we all know that I flip over the moon when people retweet me and stuff. So, I’m not going to act like I’m someone who never needs any validation whatsoever, or who looks in the mirror each morning and thinks that I’m totally the greatest thing on two legs…

But does anybody?

I feel like I have a normal human level of insecurity (and ensuing silliness regarding it). But I would never give a body part just on the hope that it’d make somebody somewhere like me.

I’ll even admit, if the psych people thought I wanted them to like me, they were right! I did want them to like me. I wanted them to like me, because I wanted them to approve me for a goal of mine. (I know they said they weren’t judging my personality, but it seemed to me they sort of were…)

Oh, and one more argument I have as to why we know I wasn’t doing this to be liked… I’ve already stated before that one thing I absolutely hated about my heart issue was all the pity! I did not like that pity people pour on you while you’re in the hospital.

When I give a kidney, sure, people will probably pay attention to me while I’m in the hospital (as people are wont to do), which is usually when I want attention the least. And then two weeks later, they’ll basically forget it’s happened – which will be good, ’cause I’ll be normal Aurora in their eyes out climbing mountains and skydiving and doing whatever it is I decide to do next.

But this would be A LOT of work to get attention for just a couple of days in the hospital – especially when that pitied hospital attention is my least favorite kind of attention at all.

There’s more to this rejection and we’ll get there next time.

Picking up from last time –

So, I thought I’d find out pretty quickly and then wait my three months. But no. I don’t even find out for 3 more months.

The day after my birthday (which is the window when I always seems to have the worst luck), I found out that I was denied the opportunity to be a living kidney donor at that hospital.

The nurse who told me was very sweet. And some of what she said is even in writing. So, I can tell you with certainty (since I still have the email) that she said, “I found you to be an absolute delight.”

Boom! So if you were wondering if I was going around being a jerk to everybody, at least one person thinks that’s not true.

Of course, whether I was a bit of a jerk to the psychologist or social worker could be debatable. I’m just saying. I’m a delight, y’all…

The nurse said she tried to advocate for me. (The doctor tried to advocate for me!) People were on my side and thought my motives made sense, and that I was a good, healthy candidate. But the psych team wasn’t having it.

The nurse strongly suggested that I try again in California. She thought I was a great candidate and things just didn’t work out well specifically at their hospital.

She elaborated for me that the social worker thought I was too worried about being liked. Apparently, the social worker got this from me mentioning how much they were writing down – like I was too nervous about it or something… Me trying to ease the tension apparently gave a deep, dark look into my insecurities that are so unbelievably huge that apparently I need to have major surgery to feel liked.

This is such a funny idea to me to think that I would want to have surgery to get people to like me. There are SO many easier ways to get people to like you! Take an interest in people. Care about them. Remember their birthdays and other important days. Be a generally good person. Polite. A good listener when someone needs you. These are all ways to possibly be better liked.

As far as I could tell, giving a kidney wasn’t going to make anybody like me more. Heck, most people thought I was crazy for wanting to do it! I don’t want to say that anyone liked me less because I wanted to do it. But the people who like me, most likely like me, because of the way I make them feel – not because I want to have major surgery. All that is, is an inconvenience to them!

They gotta worry about me. They gotta bring me smoothies. It’s just almost beyond my comprehension that someone would want to give a kidney to someone because they want to be liked! …Unless maybe, I guess the person wants to be liked by the person getting her kidney.

Now, I will say I do have some insecurities and I do understand that I’m not totally anonymous since I’m keeping a blog about this. And we’ll get into that next time.

Picking up from last time –

So, I go to their center to have my EKG done.

Everyone there is super nice. Again, even though this is a different building, I sit in a humongous (but differently styled) comfy chair to have my EKG done.

After the first one is taken… “Um, we’re just gonna have to take it again.”

Do not do this to me! You say that in the exact same tone they said that to me before I ended up in the hospital over and over again.

I’m not gonna draw it out of make this part too much of a ridiculously big deal. In the end, everything was fine. Basically, I called my amazing Boston cardiologist to say I’m trying to give a kidney and my EKG didn’t look perfect.

He took a look at it and said that while it wasn’t by-the-book perfect, it was well within a healthy range, and he believed I was fine. He also referred me to someone wonderful in Santa Monica. Dr. Milan (my amazing Boston doctor) said that this guy in SoCal (Dr. Doshi) was an old classmate from med school and was the person he’d send his own family to. So, that was very nice of him.

I went to see Dr. Doshi just to check in and such. He said that with all the work done on my heart and some scarring and such, I’m just most likely never going to have a completely and utterly normal EKG in my life. But it’s okay. My life-threatening issue is fixed, and he has complete confidence that I’d be an excellent kidney donor (at least heart-wise, which as my cardiologist, is all he can really speak to). He said he’d even write a letter to the kidney people saying so if need be.

So, great. He’s on my side.

But it didn’t really seem to matter, because I got rejected for other reasons…

By the way, a fun bit of dichotomy for you. During the very stressful experience was this kidney stuff… right after I got in the car from the hospital, I saw I had a new voicemail. It was the car dealership telling me the details to pick up my Price is Right car.

Isn’t it interesting how some things can seem so awesome and so not awesome all at the same time?

Let’s get into more not awesome kidney stuff next time.

Picking up from last time –

After the interviews, I drove over to a different building to get a CT angio for my kidney. I think technically, it may be called an arteriogram or renal angiogram.

Basically, it looks at the blood vessels coming off my kidneys to make sure everything looks in tip-top shape.

Everyone was super nice there. (And the chairs were HUGE! We could fit two people in all the chairs. I loved the spacious chairs. It made me feel as though I were royalty or something.)

Basically, they gave me an IV of contrast. They warned me I’d have a warm sensation as though I had to pee – but not to worry, that everyone feels it. I went in one of those machines (which I’d been in before for people to look at my heart). No big deal. I was in and out, and they gave me the biggest bottle of water on the planet. (It’s like a theme or something – that it’s a hospital for giants.)

Everyone at all of my tests was so wonderful about always asking, “Do you have any questions?” Overall, there were a lot of kind, sweet people in Ohio.

In addition to that, I had to wear a 24-hour blood pressure monitor. Basically, it’s just a cuff attached to a pack that you wear for a day. It inflates every… I think 20 minutes, and takes your blood pressure.

You get a paper to keep track of everything that happens in your day, in case you think your blood pressure might be spiking, so that you can explain it.

The nurse who gave me the blood pressure monitor was one of my favorite people I’d met in the whole thing. I wish I got to be around her all the time, because she was funny. She was explaining the kinds of things you should write on the paper. In writing it doesn’t sound like much – “If someone cuts you off in traffic, write that down.”

But you have to imagine her saying it with tons of attitude, and then she gives a priceless facial expression to the imaginary person who cut her off in traffic. She gave a couple of different scenarios, but I could’ve easily watched her do them all day long, because it was the greatest routine!

There were only two other tests I had to take the next day. I got a chest x-ray and an EKG.

Also, could they have possibly set this up anymore like a reality show?! As if all the other stuff that had happened wasn’t screaming “reality show!” they saved my EKG for last… The girl with the former heart problem aces every medical test… and then we check her heart. Dum dum dum (scary chords)!

And this is where we’ll pick up next time.

Picking up from yesterday –

I’m sure some of you are probably asking, “Were the interviews really that bad or are you exaggerating for effect?”

As far as I’m concerned, they were basically that bad. I did not record them. So, I can’t get anyone else’s impartial (or at least semi-impartial) opinion. I understand that our perceptions color everything in our lives.

Maybe the social worker and psychologist weren’t trying to come off they way they did. And maybe they didn’t quite come across as strong as I thought they did. But I’d say my recounting of the story is pretty darn close to accurate (or at least as to what I perceive as accurate).

Also, let’s think about this for a second: I’ll straight up admit, I am very opinionated. I am definitely stubborn. People have certainly described me as “very direct.” (I think that’s been said to me out here mainly because L.A. head games and “L.A. code” drives me crazy). So, I will not act as though I was some angel who sat and very calmly reacted to everything that was supposed to set me off.

But while I’m direct and opinionated, I have also (many times) been described as “very sweet, kind, thoughtful,” etc. Most of the time, I am nice to people. And most of the time, I know how to handle myself in a room.

Even if I get argumentative with someone, it’s never in a bullying way (I hope!).

But let’s pretend that I was really goading these women and being not a nice person to them.

Let’s go back to the idea they stated – that they don’t have to like me. They said it wasn’t about my personality, but whether I could handle kidney donation.

Basically, they explained that they are there to make sure I’m making an informed choice, and that I’m capable of making that important (and informed) choice. They make sure I’m financially stable enough to give a kidney (which involves taking a couple weeks off of work). And boom, there you have it.

Even if we pretended like I were a total and complete jerk to them, it honestly shouldn’t matter! I like to think I’m not a jerk. But even if I were – if I were a competent jerk whose bank account checks out, put me on the operating table, baby!

Even though I was about 99.99% sure that I was going to get rejected as a kidney donor, they had me continue on with the charade as there were still more tests to do (that they like to do at their own facilities, which is why I didn’t do them in California).

So, we’ll talk about those next time.

Picking up from last time –

Another thing the psychiatrist told me is that if I were giving to a family member, she’d approve me with no problems. But, I wasn’t. I was giving to a stranger.

I forget exactly how she phrased it, but she basically said, ‘Why do you care about this person. It’s not your dad, or your sister, or anyone you know.’

In disbelief, I came back with, “But it’s someone’s! It may not be my dad. But it’s someone’s dad. And if it were my dad and I didn’t match him, I’d be hoping against hope that some stranger would step up.”

Plus, as I’ve mentioned on this blog, I don’t care at all if the person has a family. Again, I care in a human caring about other human sense. But they don’t need to have a big or tight-knit family to mean something in this world to me. Even if they have no one, they are a human being! They deserve a chance to really live.

Then, she asks, “If you’re denied, will you be upset about it?”

(I could tell she was partly asking this because I was so gonna get denied so hard.)

I was still kind of, sort of-ish, trying to play the game of being a calm normal person who wasn’t totally being goaded and driven crazy by this woman. So, I answered I think pretty calmly, ‘Of course I’ll be upset. I really want to do this for someone. I’ve put a lot of time and energy into it, and it would be sad if someone didn’t get my kidney. It would be especially sad if I were denied not because of any medical reason, but because I didn’t say something correctly, or because someone didn’t like me.’

She jumped on this immediately, stating that they’re not there to decide whether they like me. They’re just there to decide if I’m capable of making decisions and successfully going through surgery and recovery. (We’ll touch on this again later.)

Then she asked, “Why would you be upset when whoever’s getting your kidney doesn’t even know you’re being tested for them? So, they can’t be disappointed…”

I’m sure my eyes probably grew 3x their normal size at this question because are you kidding me? It’s something I want to do. It’s something I’ve had to put a lot of work into. I answered with, “I’ll know!”

So, now we’ve been through the whole psychologist interview. Next time I’ll talk a bit about how I admit my perception and reality might be slightly off (but not by much!).