Words

Wordle about the transplant

This is sort of an abstract portrait of my written life for the past year

Lets all go to the lobby

I have written at length about how my life is now in its second act, but I have come to realize something. Its not quite there yet , welcome to the intermission of my life. Its not quite as dramatic as something out of the Days of Wine and Roses but it is an intermission none the less.

Intermissions really are a lost art form, it was the actuall social part of the theater, where you can connect with the other people in your praise or snark about what you have seen, or what you fear to come. Its where you plan the next stop, or call home, or just have a cigarette in the cold darkness.  Thats where i am, the hard par about this intermission is I’m the playwright and the actors too, see i have to figure out the next act. So its a bit of a working intermission, but then the best ones really are.

Imagine that you are having to cross a ravine on a tight rope, you manage not to look down too much. You move slowly and cautiously till you get to the other side, and after all the congratulations, and back slaps you look down and see what you crossed.  You finally see how high up you are, the size of the rope and the depth of the ravine.  If thats not a good time for a pause i don’t know what is.

So I get some more popcorn, and  study the posters in the lobby, trying not to think of ravines and ropes.  That of course is easier said…

It doesn’t help that i go in an out of low grade fever, every little twitch a slight reminder of the depths, which truth be told can kind of make you  buzzkill on the cocktail party set.

Its not that i haven’t been busy or working on stuff, in truth i never stopped. but for today and maybe tomorrow, i am going to hang in the lobby a bit longer . I’m hoping for a long second act, so i figure its best to enjoy the intermission while I can

How Social Media Saved my Life

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

State of the Union

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

 

 

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 maderecords, 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

 

 

“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