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

Editor’s note:Ok, I wrote this in August and posted it to friends associates and family. But what i am writing references to it so…It seemed to make sense to repost it here. I am not secret about it, it is just an aspect of my life not all of it. But what I am writing for today relates to it so read it , and now that tomorrow ill go back to complaining about the media….……………………………………………………………………

a brief note about what has been going on with me
Friends, associates and other folks,

I wanted to write a brief note about what has been going on with me, Not that I want to put the rumor mill out of a job, but I ‘d rather say it once definitively then have a million depressing conversations.

The big news is: I have Kidney disease, in particular one called IGA Nephropathy, or Berger’s Disease. Personally, I have chosen to call it Harold. (Here is a more solid description of it , or if you want way more information overload then check out http://www.igansupport.org/) It is currently without a cure; I really don’t like that incurable word, so I am choosing not to use it. Simply hasn’t been cured yet.

It’s the most common form of kidney disease in the us, but strangely not the most popular in the US ( gee, it sounds like my taste in music) . Its not fatal, well not if your in a country with modern medicine, it is serious though; it s sort of a fatty acid that stops your kidney from processing protein correctly, side effects include high blood pressure and high cholesterol, both of which help to make the disease progress. It’s vaguely hereditary, (my dad has it though he is convinced he does not, and it is a mass conspiracy against him, man I hope lunacy isn’t a side effect…)

One big thing is what a difference the Blood pressure makes, for the past few years , I found myself easily agitated constantly anxious, a lot more emotional then I had ever been, and of course out of breath. Now that’s completely different, I feel like I am in fighting shape again. Its like having blinders taken off, and snap, its that simple you can function a few million times better. What every one told me the nervousness of entering you late 30’s and bad work stress was instead an illness, thank you medical industry, now if you could have told me three years ago.

I am at 40% functionality in my kidneys, you need of dialysis or transplant at 15%. So I have a ways to go, and hoping to never have to go there. Some doctors say 1 in 4 with this will need dialysis or transplant, , some say anyone who has this and lives long enough will need it. Personally I am hoping for the former. Transplant doesn’t cure this either it’s in the blood, Quite frankly it seems that Harold doesn’t know how to take a hint. Some say you can go into remission with the right amount of homeopathy.

So I have an unwelcome house guest, that I am doing my best to make peace with, there is no magic pill or potion to make it go away, they treat the symptoms. I am on cholesterol medicine, High Blood pressure medicine and some other things that your grandparents are on. When I was diagnosed a typical blood pressure for me was 147/118 ( for those who are not in the blood pressure know, that is bad; fat guy in nursing home eating ribs bad) today I hover around 114/65 (that’s good, Jack Lalane good). I go to the gym on a regular basis, and to date have lost like 30 pounds- its amazing what a good motivator disease is for weight loss. Of course I am truly astounded by how tubby I had gotten. Other then that I had to cut down on liquor, give up aspirin. They tell me that’s how to keep it in check, so that’s what I do.

I see the doctor every three months and that’s really it, I am not in any pain (well save after too heavy a workout) and I am sometimes fatigued, but hey at least I have an excuse now!) As far as your major diseases go it could be a hell of a lot worse. Yes its scary, but not a lot I can do about it; you play the cards your dealt. How you play them is up to you.
So that’s the story, I apologize for doing this in a Blogand not saying it right away, but I need the time to get my head around it and its not like it was information that has an expiration date. It has taken me a few months to accept this, I wanted to feel like a “guy” when I told people, not a “guy with kidney disease”. It just took a little time to get to that place. I do not to feel broken. I do however feel a little scuffed. But isn’t that to be expected?

So now you know, and as GI Joe told us, knowing is half the battle.

Your Pal,

C

PS: totally serious about the not dying thing, So please don’t act like I am fragile, cause that really ooks me out.