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I have not updated in a long time.

Megan is ill, she has been diagnosed with gastroparesis.  between that, Kyr coming home, mom and dad's 50th anniversary and wrecking yet ANOTHER car my summer has left me pretty drained and without the time to get over to Chicago.

I am going to Chicago (finally) on Wednesday and Thursday next week for the next step in evaulations.  Not real sure if there will be any others after this, my guess is that it depends on how things turn out this time.

I am excited and nervous.  It is something I really want to do but I keep telling myself I have to be prepared to get turned down.  Until I know for sure what is going to happen I need to just leave it be and let what is going to happen come naturally.

I may get to meet Debbie while I am there.  She seems like an incredibly genuine woman and asks all the time how Megan is doing.  With everything she is going through I don't detect any "why me" in her.  Not that everyone doesn't have a touch of it from time to time but I don't get that vibe from her at all.  She takes things day by day and seems to be able to retain her balance.  She just found out that she is going to become a grandma soon!

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The "although we appreciate your interest please do not pin your hopes on being her match, it is highly likely she will not be able to find a live blood match" officially turned into, "YOU are the one in a million match".

I got the call yesterday while I was cleaning out the garden behind the garage.  I spoke with Kathy, the transplant coordinator, for quite some time about the whole process and whether or not my potential recipient had been informed yet.  My recipient had not been advised and as nervous as I was I made the decision to call her.  Of course her phone went to voice mail and the next hour was spent frantically weeding the garden just to keep myself busy.  She was very sweet when she called, she was not aware that I had even started the process and I think it is fair to say she was floored when I told her I was a blood match.  I talked to her for an hour or so and came to the conclusion that had I met her in real life she is someone I would be friends with.  If I go to Chicago for testing she wants to meet for lunch or a beer or something while I am in town, if I am interested.

Twice this year she has been called for a cadaver kidney, only to be told at the last minute that it wasn't going to work.  How devastating.  She just lets it roll off her shoulders. She admitted that there are bad days here and there but for the most part she just ignores it all and lets what will happen, well, happen.  I would like to think that if I was in her position I would do it the same way but I seriously doubt I would be that strong.

Spoke to Mom about it, she is not ever going to agree with my decision but she is also not mad about it.  I wish she was 100% behind me but I can see her points too.  As a mom I would worry about all the little what-ifs too, it's what we do once we become a mom and I doubt it is something you can ever turn off.  Everyone who knows me knows that for the most part I want to do this all on my own but I know I won't be able to drive myself home, I would love it if Kyr could but that is probably not going to be an option.  I will have to do some soul searching to decide who I want to inconvenience for a ride home. I know there are scores of people that would do it but I have to figure out who will miss the least work/use the least gas/etc before I approach someone.

I spoke with HR today, the whole 30 days is excused duty, I do not have to blown my time at all to do this.  I thought that was how it was set up but the paperwork they sent me for FMLA to cover my benefits said nothing about excused duty.  Apparently no one has ever had excused duty and FMLA at the same time, I have to write in the excused duty by hand before I turn the paperwork back in.  Tomorrow I will arrange my next step of testing, the sooner I can get this done the better but it may be a looooonnnnnngggg wait after the next round.  I don't know how people waiting for an organ do this day in and day out, the wait freaking kills me.

So, I am an initial match and I can't remember the last time I was so nervous, excited or scared.  I really did not think I would be a blood match and now that I am I have to make sure I don't get my hopes up about the next step of evaluations in case I get knocked out of contention.  I like to think that the reason I could not get things lined up with the first few people I contacted is because the universe or god or fate or whatever was telling me that I was needed elsewhere.  Whatever pushed me in this direction needs to keep clearing the way for me.

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Last Friday Megan called to inform me that there was a package from the University of Chicago hospitals waiting for me at home.  I have been selected to start the process.  There was quite a bit of reading material, which I made it through quickly.  It did not teach me anything, really, other than if you change your mind at the last minute they will tell the patient that medical complications arose that make you an incompatible donor...they will not tell a patient that you backed out.  I guess that makes some sense, dashing the hopes of an ill person probably doesn't help anything but I think I would want them to be honest with me if someone wanted to back out.  Most everything else I had read before, I've done so much research in the last few years I think I grasp the whole subject fairly well.

My blood draw has to be on a Monday, Tuesday or Wednesday and since mine are full for right now I will get blood drawn in a few weeks, more than likely week after next.  I am excited/dreading it.  I would love to be a  match, am hoping that I will be and dreading being told that I am a sucky match and to move on.  I think I always have the ability to do a paired exchange, that is something I will have to roll around the brain when the time comes.

Fingers crossed, I would love to be her match since she's a hard subject.

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I called and spoke with transplant coordinator,  Kathy Davis, at the University of Chicago hospital, yesterday after work.  I passed her tests and now it is being sent on to the financial offices for consideration.  The only thing that may prevent me from donating is the fact that I had gestational diabetes with the girls.  Even though it was years ago, diet controlled and very mild it may come into play.  We will find out as things progress even further.

I emailed Debbie to let her know where the process was, asked her to let me know if she heard anything back before I did.  The siting and waiting for judgement is hard for me, I can imagine what it is like for someone waiting for a transplant.

Fingers crossed on this one, since she is such a difficult match I really want to be the one.

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The ball is rolling, I will be getting the name and number of a transplant coordinator in Illinois within the next day or so.  The patients name is Debbie, she is a 40 year old married mother of 4 that donated her time and energy to help in her community before she fell ill.  Her goal once she gets her health back is to assist Habitat for Humanity on a house build, something I have always wanted to do.  I can tell by her response that she is cautiously optimistic about our pairing, I can't say I blame her.  I did tell her that I would contact her coordinator early next week even though I plan on calling tomorrow.  Hopefully  that will give her a weekend free of wondering if calls have been made and what is going on.

The process through her center is fairly simple, to start.  I will talk to her coordinator and do a quick over the phone history to see if there is anything that will bar me from donation.  If I look like a plausible candidate then everything will be forwarded to her insurance company to get permission to start testing.  The initial testing consists of nothing more than an in depth questionaire and one vial of blood.  I don't even have to have a physical, that will only happen if it appears we may be a match, which I very much hope we are.

I know that this match is more than a long shot, her illness is going to make a match very difficult to find which makes me want to be the one even more. 

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So I made the call and I was right, I was shaking over a few second voicemail.  I still think it is silly but it is what it is.

So

For the third time I have contacted someone just as/after they have received a transplant from another donor.  I must have some sort of touch, some sort of good kidney boogajoo.  I really never thought it would be this hard.  Maybe at some point I will become discouraged and walk away, or let it wear me down and hand the decisionover to strangers who make decisions based on some need matrix on a computer or I will open my profile and see if anyone comes looking for me.  I hope not.  It took me a long time to come to terms with all of this and find the way that is right for me and I am not going to abandon the process in less than 6 months, especially since the things that have made this journey bumpy is that people are getting what they need, their health!  What a joyous thing to cause trouble :)

So I have sent off an email to a 40 something mother of 4 over in Illinois.  She is going to be a hard match and I doubt we'll be a fit from the sounds of it, but I will do the preliminary match work if she is interested.  If nothing else it will get all my numbers on file and make any potential match in the future easier to deal with.  If I can tell right off bat that we are too far apart to be a match I won't even have to contact anyone and start up false hopes.  I can't imagine what it is like to sit and wait for a phone call like that.  It almost makes me breathless just thinking about it.  As if sitting hooked to a machine 12+ hours a week in order to save your life/make you ill is not bad enough.

My family has always been fairly healthy, it is something I am appreciating even more as the years slip by.

Ok, off to contact one more person.  If this one doesn't quite work out I will sit and wait for a while longer, my kidney will be just as good in April as it is now.  Wish me luck!

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I first started thinking about kidney donation a few years ago.  It was just a blip on my radar started by a human interest story on an altruistic donation between two strangers.  I looked into it just a bit but found that there were several moral/ethical/financial things that I would need to work out with myself before it was something I could seriously consider.  Needless to say, I have not entered into this decision lightly.  I did not just wake up this morning and think, "hhrrrrmm, I have this pesky extra kidney I need to get out of me and today is the day it's got to find a new home."

There are so many ways a live donor can approach this journey.  You can do a complete stranger donation, opting to meet your recipient later if they desire to or you can opt to never meet them or find out how things go for them if you wish, you can donate to someone you know, or you can hand pick the person that you want to give your kidney to.  I don't know anyone that needs a kidney, so that is out.  A total stranger donation leaves the decision in the hands of strangers and while the lack of pressure to make any decisions is nice I would like to know that the person I am donating to is a halfway decent person.  The picking a stranger seemed very much like a popularity contest and that didn't seem quite right either.  It took a few years to come to terms with taking on the responsibility of picking a recipient.  There are no guarantees that the person I (hopefully) donate to doesn't end up being a serial killer, someone that refuses to take their anti-rejection meds, a raving bigot or homophobe, your standard mouth-breathing Cletus, or God forbid a staunch conservative Republican.  Once I made it past the "there are no guarantees" hurdle in my brain I then had to jump the "who am I to pick who deserves this and who doesn't" hurdle.  I am not God, I know this, I have always known this.  Once I realized that I am not deciding who is worthy and who is not, I am simply offering up a little piece of me to assist someone in their time of need.  Hopefully this someone is a good person, with a good heart and the desire to go out and live a life that in someway gives back to the world.  They don't have to be an activist or a high profile community leader, just someone that gives something positive back to this world, if they do that is great, if they don't there is nothing I can do about it, but I can try to get this right for me.

I have kids, family and friends that I adore.  What if one of them needed a kidney later on and I was a match but couldn't help because I already handed mine to someone else.  What if I don't make it throughthe surgery?  You know what, if it happens it happens.  What if I drove to work and got in an accident and died and left my kids without a mother.  The world is full of what ifs, most of them much more likely to happen than one of my own needing MY kidney or something terrible happening during the donation process.  I cannot let those what ifs keep my paralized with fear in my home hiding from the world.  As far as I can tell there is no kidney disease in my family nor with my friends and if there was I would sure love it if someone was there to help us out, be it stranger or a loved one.  While my mom is not happy with the idea my kids are 100% in support of my decision to donate.  Mom is just being a mom, I would be scared too if my kids were to come to me with this, but she will support me, like it or not, because that is how our family rolls.  The kids have all been told that if they change their minds to let me know.  They know the risks and the benefits, they weighed them carefully and have said, without any doubt, to proceed as I see fit.  If they change their little minds, I will listen and re-consider, but knowing them they will be standing behind me the whole time, supporting me in whatever way they can.  Even the ex husband said he would help out with whatever is needed during this process, we may not have been good together married but he is a good Dad and will make sure that things go as smooth as possible, because family is family and that is all there is to it.

Finances were an issue.  Being a single mother and having a mortgage and other financial responsibilities it just seemed a stretch to take the time off from work that I would need to go through something like this.  I knew I could build up enough sick, comp and vacation to cover the time off work but travel expenses and day-to-day things that always seem to pop up scared the bejesus out of me.  Last week I went and talked to our HR people about an extended leave of absence and was delighted by the news that our state law gives me the right to take a month off from work, paid, to donate an organ.  This will not affect my insurance, seniority, vacation or sick time.  I really think that at some point in time I am going to have to find a way to get the word out to others that they have the option to help someone this way.  If this little known secret can make one person step up to donate to one person it will be worth spending the time and effort getting the word out.  Like everything else, education goes a long way.  This in no way will cover what I will miss from my part time job nor will it cover travel expenses or lodging or anything else, but I will cross that bridge when I come to it.  Being a little financially tight for a bit is something I am certain will not be a huge strain, a strain for sure, but nothing I cannot get past.

Now, you'd think that offering up a kidney would be fairly easy.  More than 15 people a day die waiting for a transplant.  I have read anywhere from 15 to 19 a day.  Wow.  Considering how populous this country is that isn't much but considering how easy the fix is for most of those people it seems absurdly high, especially when you think about what those people endure while they are waiting.  I imagined people jumping at the chance to lay claim to my kidney.  I tried setting things up with a man out west, he seemed like someone that would "live the shit" outta my kidney.  He was blessed with a healthy donor before I was able to step up.  I sent a message to a mother with a son that was in need of an adult kidney, no response.  I have sent a message to a school teacher down south, again no responses.  I was sitting here thinking, "really, if it were me I would be checking my messages daily, multiple times, obsessively"  That line of thought was very short lived.  Honestly, if it were me I probably would check often, at first, and after a day or two's worth of disappointment I would proably step away and get back to dealing with my life  full of Drs appointments and dialysis and all the other crappy things that you'd have to go through.  Life would be hard enough having to be tethered to a machine for hours on end just to stay alive, what time I had away from that I would want to be out living what I could, because we.never.know.

This afternoon I will be placing a phone call to the teacher down south.  As hard as it is to go public and ask a stranger for a kidney, I find it almost as hard to offer one up.  It seems almost invasive, I know that is silly, but that is what it feels like.  I am not afraid of being rejected, "I don't want your smelly old kidney" I am worried about bothering a total stranger.  I am charging up my phone now, just in case, for something that will probably be a 30 second message that I will be leaving on a voice mail.  I am shaking on the inside now, and I am sure my hands will be shaking when I pick up the phone.  I have tried to wrap my brain around the fact that donating a kidney doesn't leave me weak in the knees but calling a stranger does, I gave up, it is what it is.