A video i did of a Pecha Kucha presentation I gave  about the transplant, I altered the form to better suit the net but more or less its the same

You can also check out a story by  Kristin Tilitson in the Mpls StarTribune

Its new years and if there is a better time for self-reflection I can’t think of it. I am truly blessed, and blessed is one of those

Me and William the Conqueror

words I hate. Its usually uttered by people in lifetime movies whose lives seem far from blessed.  Its uttered by people who think that every misrung item at the grocery store is a message from Heaven rewarding them.  But I will use it because in this case its true. For Christmas I got a life back, a different life the one I had before but life none the less. I have been incredibly fortunate not just from  Scott’s graciousness, But the amazing people who helped in my care: my Dialysis team of Lindsay, Jenn, Kate and Chonda. A team that helped me to establish a new albeit temporary normal. I can’t state enough how incredible they were, they went above and beyond, bringing me from someone who couldn’t really walk and was a mental mess, to a normal productive member of society.

The team at the U being equally amazing: my surgeon Ty Dunn who is the kind of doctor that I thought only existed  on TV,  personable, real and went  far beyond the call of duty. The nursing staff of the transplant clinic that helped through  the rather rough transitional period, Dana and Rita in particular. This isn’t just about  the medical side  but the also important human side as well.

For those who are late to the story and in need of recap allow me to catch you up. On December 1, (2009) I received a kidney transplant,  after  6 month on dialysis (often refereed to  Happy Fun Time), this after being diagnosed with IGA Nepropathy (referred to as Harold) 3 years prior and probably having it since high school or junior high. My kidney donor the nicest man on earth Scott Pakudaitis and i arranged the whole thing via Twitter and Facebook, not meeting in meatspace till Thanksgiving,4 days before. (i did know him prior but not well. He named the kidney William the Conquer; he who defeated King Harold) .

They  say that in getting a transplant your essentially trading one disease for another, Its a disease thats not has bad to be certain. But its not without  its issues at least in the beginning. To be precise most of the first month after getting out of the hospital was spent going back and forth between the transplant clinic at the U. Getting infusions  which is a fancy way of saying iv treatments. In the beginning it was an anti-rejection drug called Thymo, a 5 hour affair  chock full of side effects like nausea, mystery rashes and my personal favorite red eyes giving me the appearance of an albino rat- not my best look. From there I moved on to saline , a much more palatable 2 hour process. Of course combined with testing and such it still made for 5 1/2 hour day (starting at the unreasonable time of 6:50 am). My new diet has an addition of some 40 separate pills a day, in addition to a minimum of 2 liters of fluid a day.  My job is in a sense to take drugs ,drink, pee and sleep; while that sounds like Hunter Thompsons dream life; it’s a lot less glamorous  then it sounds.

Of course these drugs have side effects, sadly none of said side effects are anything cool (once i want to take a drug where the side effect is  telekinesis  or invulnerability as opposed to” loose or watery stools”) I am finally getting over the side effects of a drug that I got in the hospital which was to make me very emotional. I would get teary eyed at the drop of a hat; at commercials,  “Bring it On”, an episode of Extreme Makeover. It made for an interesting holiday season.

Recovery is a weird process, mine was a bit more complex then anticipated, in part because of wacky blood pressure/ dehydration issues. int the beginning my blood pressure would barely be at 100/70 and would plummet to 65/50 when standing. Normal blood pressure is 120/80. Now i am on pills that make me hold on to water, which  in turn raise my blood pressure to 140’s/90’s  and then blood pressure bills which lower that to the the 130’s over 90’s I still drop 30 or so points when standing, but its still enough that i can stay walking.  Needless to say that sort of keeps me from getting back to a more normal life. But its a month out so really its not all that bad. The transplant coordinator, sort of your personal cruise director for your post transplant experience tells me this isn’t all that weird. and it will get sussed in the next few weeks.

The greatest risk in transplant rejection is in the first month, then it lowers by some big percentage for the first six weeks, then the first six months. Each anniversary the percentage lowers more. Rejection is treatable for the most part, but even still I’d rather not find out.

My goal is for this not to be a big deal, much the same way I dealt with Harold in the beginning refusing to let it define my life. I  still made records, made a film, not to mention a glorious if not completely unseen pilot for KTCA. The problem is for the time being recovery sort of takes precedent over life.  But that time will come when this is just an answer on a post card, much like

Me in Dialysis

“did you know George Lopez had a kidney transplant- say have you seen his new show. Yeah me neither”. In the meantime everyday i feel a little better, a little more me like.

I would be remiss also if I didn’t thank everyone for there support  which has been amazing  almost a 1000 comments on my profile the week of the surgery, and even more during the recovery time . I thank each and everyone, that made this so much better even though i was alone in my hospital room , just me and a morphine drip I knew I really wasn’t. That kind of support can literally help you move mountains. I am a amazed at peoples  generosity, be it with time, food , gift certificates for more food,a toy squirrel,  comics or just a nod in my direction. It is truly overwhelming and most humbling. I also need to mention how amazing my wife is: Mo went above and beyond,  she really was incredible and continues to be.  My wife rules.

The big fear with this: who am I when this is all done. We are in fact a big collection of chemicals  you change that balance you change your definition. Plus how much of the last year has been me and how much has been Harold. With Harold I felt old, really old. Every day that i had Happy Fun Time, I felt like i was being put out to pasture. Like it was a life less then vital, which for me was a special sort of  hell. I have been pretty fortunate in being the thick of things for most of my life/career, and now i felt like i was in the old hipsters home. Now I don’t feel that way at all its like my own personal youthquake- in spite of the fact I can’t bend over or lift anything more then 10 pounds. It feels like the start of act 2, as opposed  to the middle of the third act.

I have no idea what the future is going to bring right now, but I can’t wait. Whatever it is it’s gonna be amazing.

And Scott , i promise to live up to the potential you gave me

I need to write more, but I can almost never bring myself to do it. I stare briefly at the computer screen, with a sentence formed in my head, before I quickly turn the browser to Facebook. It’s my own personal form of avoidance Oh hell let’s be honest its pretty much all of the slackergencia’s form of avoidance, my generation really sort of mastered that particular art form. The economy sucks, everyone is broke, and if they aren’t they are preparing to be. I saw my whole industry die a stupid and ignoble death, leaving generations to try and figure out what to do once the record industry is gone. Make no mistake its over, There is no bailout for the indie world, if only we made expensive things that put people in debt and destroyed the economy then we could get a check.

I find myself in the rather odd predicament of having lots of little projects and because the nature of them (Film, TV. Music) they have a certain profile, while at the same time I haven’t had the well paying corporate gig that subsidizes it all since June. Giving me plenty of time to brood and more importantly worry.

Not this Harold, a different one

Harold (the name that i gave my kidney disease) has become more forefront as he slowly (hopefully very very slowly) shuts down an organ, the thing is its not just that its all the other questions and read questions as fear that it raises. Make no mistake oh dear and gentle reader this is a disease that feeds on fear, like fat people at an Old country Buffet, and me I am chock full of fear. One of the many joys of chronic disease is not being able to tell actual symptoms from the messed up anxieties in my head ( please note that said anxieties are different then those in your head) See the thing is I don’t want to be defined by disease but right now it’s hard help it. It’s like it doesn’t just have a hold of my kidneys, it very selfishly seems to want my whole life.

I get told by people how brave I am and I’d love to be able to front a little here, play off that Steve McQueen cool thing, but it’s total utter nonsense: because I am scarred. It’s a reasonable fear for certain but fear nonetheless. Fear is not cool, not even in anti-cool nerd chic way. It’s a mastodon chasing you into the cave type of primal thing. And me, I am an all you can eat buffet of fear, which sadly is just the right diet for someone like Harold.

For me in most aspects of my life I deal with fear by jumping in head first, if it scares me I confront it, because I want to conquer it. Its worked great in business I made a lot of people a lot of money (of course I never managed to make all that much for me), It helped me make art with some amazing people most of whom had no business taking my phone call in the first place. That conformational edge helped me to rule the world or at least a very small corner of it. That was of course until I met Harold.

It all changed once he entered the picture, his presence in my life has ebbed and flowed in relation to the severity of his toxicity right now he back and with an ego. I worry about playing it safe, its not about money, or career , things that lost that can be built again, this game you only get the one chip, so you better play it the best you can. Why is it that when forced to take a seat in the high stakes game i start to play like a nervous dowager.
Fear comes in all sorts of flavors, its what keeps us in a job that is going nowhere, relationships that are just sad, it makes people wear pleated Dockers and shirts with golf logos on them. It makes us drink too much or not enough. It makes people virgins, it makes peoples whores, and it is a great motivator- only in reverse. It’s something your never thankful for: honestly when was the last time you said “Thank God I was so afraid of Fill in the Blank ”It’s what keeps us from doing the right thing, or finding the secret treasure that we keep hidden in our hearts.

Fear does have an archenemy though: Faith, sadly faith and I have had a somewhat rocky relationship, but that’s what happens when you start to doubt. You wake up one day and wonder where your life went, when it changed from a song by Mission of Burma to something by the Eagles, and we aren’t talking Kinda ok Glen Fry “Take it Easy” Eagles, but the hell-spawn damnation “Boys of Summer” Don Henley Eagles. Fear moves in and Faith does something else, possible a tour of hostels in Europe- I really don’t know she never writes.

Don Henley

I want to rebuild my relationship with Faith, but I have no idea how, she’s fickle and you really have to do all the work, I am told that there is great reward if you stick around but I have never been around for the Payout. Meanwhile Fear just never wants to go home. I do believe that everything has a purpose and I have to wonder if Harold’s not here to help Faith and me get back together. In the meant time I find myself a not so lucky Pierre in a most unfortunate threesome

I want to have normal conversations, complain about Britney Spears, make fun of Orin Hatch, but each little tweak in my body, every patch of dry skin, or minor cough brings him to the forefront. Faith would tell me not to worry about the little stuff, she’s nowhere to be found, instead Fear is there, and she wants to make smores. I hope that Faith comes by soon.

Everybody hates a sequel, yet here I am sequeling, or really giving an update. My Kidney disease, or Harold as I call it, has gotten worse. So much worse that I need a transplant, and within the next couple of months if I am to avoid Dialysis, which I am trying to avoid like a cabinet appointee is the IRS.

My levels got worse last fall after I made “Unconvention” a documentary about the RNC. They stabilized briefly and then got worse, and worse quickly. At the beginning of February (2009) I went to the Mayo for a second opinion. That’s when they told me.

The transplant list that they always talk about in medical shows really is a list- but unlike on TV the wait is about seven years. Hence why we have started the call for a “donor Kidney” basically friend or family who can give me one. (Oddly enough the U just published a study about Kidney donors and how it doesn’t have an effect on there lifespan or health http://tinyurl.com/awgybe Nowadays the donor doesn’t even get much of a scar , they use lazars, all very sci-fi). My other option is Dialysis, which is 3 times a week 4 hours a day. And your zonked on the day in-between. People on Dialysis can collect disability because its akin to being handicapped.

A transplant lasts 10-15 years then I get to do it all over again (God willing new Stem Cell research will have made this whole process much easier by then), so the reality is I might need Dialysis then. Given its ability to destroy your veins, I want to wait as long as possible before going on it, don’t get me wrong I’d be very happy never going on it If I could.

The whole process is surreal, and scary, not to mention weird , and did I say scary? It’s like your in school, and the class gets divided into 2 groups: healthy and sick, suddenly your in a much smaller group on the other side of the room, and your friends are all on the other side, and your now riding the short bus. Nobody wants to ride the short bus.

I don’t expect everyone I know to immediately drop everything and call but I get asked so I want to include it in this note. I don’t want anyone to feel obligated or coerced in any way. To be honest this whole process is surreal, but not in a cool Daliesque way, more like an Escher drawing, lots of stairs, lots of doors, no map.

If you do want to find out about donating your kidney you can call 612 625 7010, Margaret and Cathy are the donor coordinators, they do a 20 minute telephone interview getting some history and looking for any flags. If that goes well they send you a pack to bring to your doctor (or set you up at the U to draw blood, then they see if it matches to mine. (Apparently blood type isn’t as big a deal as it once was ). If you do donate, my insurance covers the medical costs, there are also some grants available to cover time away from work, or travel if necessary. The whole thing is anonymous to me until the end, so I don’t know who called or their progress. Margaret and Cathy can give you a lot more answers then that, but that’s gist of it.

As for other stuff, what I need is friendship, and a hell of a lot of distraction. I am one who often gets trapped in my own head, so anything that gets me out of it is a plus. Not every, or for that matter any, conversation needs to be about Harold. He is after all kind of a prick.

I do have insurance thanks to my partnership in Miyagi (keep me healthy get a haircut- hmm possibly the worst slogan ever) So right now we are ok, of course that may change as the whole thing unfolds.

The most amazing part of this is that as I feel at my lowest- I am amazed by the response of my accumulated friends and acquaintance. I am incredibly fortunate because I have gotten to be a part of so many different and amazing communities, so many great people some who have shown remarkable kindness. From people I have known all my life, and people I barely know. Giving someone a kidney isn’t like loaning them a sweater, the fact that it’s even considered is in itself an extraordinary and humbling experience.

Please do feel free to pass this along to those that might find it of interest, and I will leave you oh dear and gentle reader a few promises, ones that I am counting on you to help me keep.
1. I will survive: Gloria Gaynor has nothing on me. If I made it through my lifetime movie of the week worthy childhood, there is no way I am gonna get punked by kidney disease.
2. I am going to kick this diseases ass: sure I might need a transplant, but I am going to continuing to be me, making ridiculously big art, crazy records and pithy commentary about whatever the hell I feel like
3. Better Faster Stronger: I look at this as a rebuilding, almost being reborn but without the religious connations. It worked for the Six Million Dollar Man, why not me?

Your pal,

c