this blog

The ramblings and observations of a kidney transplant recipient, although not necessarily for that reason.

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A Confederacy of Dunces by John Kennedy Toole (recommended by Killer)
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Prime Rib Is Never Enough
Saturday, April 29, 2006
After 36 years on this earth I have become the perfect gift giver. I always know the perfectly appropriate gift to get someone based on the level of our friendship/relationship and the event at hand. For the rest of my life (after transplant) I will be faced with the dilemna of not ever knowing exactly what to get Matt, my lifelong friend and kidney donor. I'll never be able to find him an appropriate present for any occasion, but more specifically, for a thank you present. I'll forever be trapped in the world between "hollow gesture" and "absurdly too much," and often a little of each.

Have you ever considered the person that would give you a kidney if you needed one? What would be an appropriate thank you for that person? What if that person turned out to be someone different than you thought it would be?

I always thought it would be a family member that gave me a kidney. My uncle.....someone that I share unconditional love with. A person that would know without a doubt that I would give them a kidney if the roles were switched. For various reasons, it ended up not being my family, but my friend that would be giving me the kidney. A lifelong friend?... yes. A very good friend?.... yes. My best friend? While Matt is someone I greatly respect, admire, and appreciate, I believe he would agree with me that our friendship is not one of those that is one of unconditonal love. No one would blame Matt for thinking he might be giving a kidney to someone that might not return the favor. But then, I've never really had the real ability to consider it. I've known my whole adult life, I could never be a kidney donor.

Tonight I'm having a "Thank You Dinner" for Matt. Twenty or so of our mutual friends are going to a nice prime rib restaurant to thank Matt for what he's doing for me. That's not enough, right? Will everyone at the dinner be able to see its as hollow a gesture as I think it is?

What am I supposed to for Matt to repay him for what he's doing for me? Am I supposed to find one grand gesture to make and then forget about it? Am I supposed to realize that no one thing will compare, so I should make smaller gestures, over and over for the rest of my life, and hope that the collectively they add up to be enough when our lives are over? Should I start a cult in Matt's name, relinquish all my worldly possessions, and recuit people to follow Matt to the end of the Earth? I think that would be awkward for both of us.

My roommate says the best thing I can do honor Matt is to just be healthy. Be the person that deserves his kidney, and don't be someone who will let it go to waste by contributing to my poor health in other ways (like smoking, drinking, and driving intentionally on the wrong side of the road). I know he's right, but to do that is to make no ACTIVE gesture whatsoever. It's like doing nothing.

Prime rib's not enough, is it?
posted by othur-me @ 12:25 PM   2 comments
2nd Friday Before
Friday, April 28, 2006
It feels like I have endless amounts of tasks to complete before my surgery. With less than 2 weeks to go, I'm not sure I'll get everything done I want to get done. Still, tonight, I'm not going to accomplish anything on my list because I have tickets to the Giants game, and thats important to me as well. I won't get to go to many games this year after my surgery, so I better get some in before.

posted by othur-me @ 5:49 PM   0 comments
Lunchtime Dribble - The Devil's Nectar
Carbonated Water, High Fructose Corn Syrup, Caramel Color, Phosphoric Acid, Natural Flavors, Caffeine

Above is the magical formula for the most delightful potable I know. If you told me as a child this concoction had healing qualities, I would have believed you. This, my friends, is the recipe for the almighty Coca Cola. Not Pepsi or RC or any of those strangely flavored colas like Dr. Pepper or Mr. Pibb, nothing generic, and for Christ's sake, not diet or caffeine free, or Coke-Lite, or whatever they are trying to sell you as cola alternatives these days. GOOD OLD FASHIONED COCA COLA CLASSIC!!!!

OK so I'm a cola snob. I admit it. Now I'm ready to move on. I have to. As a child I drank WAY too much of this stuff and while I don't doubt it may be (althought impossible to prove) the #1 factor in poor state of my health and well being today, I really did believe it made me feel better when I was ill as a child. Stomach ache - a coke will help. Headache - a coke will help. Allergies, common cold, depression, kidney disease???? - a coke will help.

As a adult, I probably cut the cola consumption in half, yet still drank way too much. Then the biggest change in my life happens: I find out my kidneys are well on their way to failure. The kindly Dr. Fred Lui (pronounced Louie) politely introduces himself and gets right to the point of "there's nothing good about what I have to tell you" there it kidneys are failing. Soon I will be faced with.....what?......I don't know yet......illness?....death?.....a life of dialysis?......transplant? Everything is surreal....none of it sinks in......and here comes Dr. Lui with "this is how your life will change right now" order to preserve my kidney function I need to go on a low protein diet. WHAAAAAT? I just started the Caveman Diet. Maybe you've heard of it? Its the one where you eat all the steak and bacon you want as long as you don't have any wheat bread with it? You see....I'm fat....I need to lose way I can do this low protein thing.

Fred points out my kidney function is more important than my weight at this point....although both are very important to my overall health and here's the name of a nutritionist that can try to help me with both. Well.....if I'm going off my Caveman/Atkins/Southbeach/Sugarbusters diet....I'm drinking my favorite drink again. Now I have an excuse People who love me, hear this....I can drink coke. The Dr. said it's ok as long as I don't eat too much protein. (that's not what he said). Anyways...go on Dr. else will my life change. Low potassium....fucking favorite fruit bananas, out the window. now I'm crossing steak and bacon and bananas off my list...this is the shits, but at least I have my coke! last thing and this is the biggest need to stay away from phosphorous.....which is found mainly in know...nuts and beans (ok....I'm being reduced to eat lettuce and Coke, but at least there's Coke). Also, phosphorous is prevalent in the dark colas. SSCREEEEECHING HAAAAALLLLLT! Dr.....surely you've been reading my mind and are fucking with me. You can drink orange soda (YUCK) or 7-up (YUCK) or even root beer (YUCK and although its literally a dark brown soda, its got no phosphorous). Pretty much you can drink whatever soda you want except for COLAS! THIS SUCKS MONKEY NUTS!

I know.....its weird when you're sick....yeah, your life expectancy shortens significantly, I'm going to be very ill at some point, and most of my life will be inconvenienced by dialysis or multiple major surgeries, and all I an think of at the time is I can't drink Coke ever again. Believe me, the little things are worse to bear when you're in the moment and its probably better that way. It helps keep your mind of the big things that are really going on.

So onward in life....I manage to work in all these changes.....low protein, low potassium, low phosporus, althought its not easy. Doctors and nutritionists don't really have many answers for you.....they leave it up to you. I went to the nutritionist hoping she would say.....can't eat this, don't eat this, can't eat that, do eat this and this and that....thank you that'll be $100. Instead I got....shouldn't eat this, that's ok once in awhile, eat this sometimes but not all the time, and its really up to you to make the right choices, and thank you that'll be $150. That's bullshit....don't tell me I can have a banana once in awhile or that in the grand scheme of things, a coke won't kill me every now and then.....cause here's what happens. One day, I think.....she said I could have a i do......the next day, she said I could have some I do.....the next day, she said a coke won't kill me once in OF COURSE I DO! Now even though indvidually speaking, I am practicing a low potassium, low protein, and low phosphorous diet.....collectively speaking, I am eating a lot of potassium, protein and phosphorous. And its all my fault.....yet I managed to control it for the most part and stretch out the remaining life of my kidneys out over 4 or 5 years. I am, a little more than a week from transplant. I'm thinking all this time....once I get my transplant I don't have to be on this restricted diet. I can eat all the potassium, protein, and phosphorous I want. And its true.....after the the transplant the recommended diet is merely low fat and low sodium (that's what they recommend for just about every human on earth, transplant or not). YAY! There were moments over the last 5 years I had almost convinced myself that the only reason I'm getting this transplant is so that I can drink Coke again.

I went to my pre-op meeting with the in-patient coordinator earlier this week. He had several hours of dialogue to give me about what my life would be like just before, during, and long after my surgery. I discovered from this meeting that Coca Cola cursed. For reasons other than the phosphorous, I cannot drink Coke (on a regular basis, spoken much like my nutritionist). Due to the immunosuppressant drugs I'll be taking....I can't have too much caffeine or alcohol. These things dehydrate you and when you lose the water in your bloodstream, the density of the drugs in your blood increases....and this is bad for your kidney(s).

I have figured out that my time to drink Coca Cola is now. A week or so before the surgery. There's no point in saving what little remains of my kidney function as they will be disconnected in a week, so today with lunch....and probably everyday for this next week. I'm having a Coke (and a smile).
posted by othur-me @ 12:00 PM   0 comments
Survivor Update
Thursday, April 27, 2006
Cerie has gone from "Melinda's going first, and then you're next" to being the mastermind behind Courtney's surprise departure. Cerie even managed to beat Shane in the Immunity Competition (carrying a percentage of your own weight for as long as possible). Please, Shane, you should feel pathetic. In my opinion, she would be the most derserving winner of Survivor, possible or all seasons of the show. No one has gone from such weakness to such strength. Cerie should win it all....although the person that should usually doesn't.
posted by othur-me @ 11:51 PM   0 comments
First Entry
So...I'm getting a kidney transplant. Lucky me! (really) On May 8, 2006 the amazing surgeons at Stanford hopital will open me up and fix me with what amounts to a completely new transmission. One donated by my lifelong friend Matt. Too EFFING wierd!

I wish I had begun writing about this much sooner in the process. I'm really waist deep in it now and I wish I could read this back later and see where my head was at much earlier in the process. I mean, just about 5 years ago I thought I was normal (or more normal, at least). Although, I knew I had kidney problems as a child, all indicators pointed towards normal kidney function by the time I was 18. At 30, I had all but forgotten the childhood woes of discovering I had a rare kidney disease (IGA Nephropathy). Back then 1982, they called it Berger's Disease, and while I delighted in telling people I had "Ber-zjay's" Disease (very French sounding)....I was never to sure it wasn't really just pronounced "Bur-ger's" Disease, much more the disease of a common 12 year old kid like me.

Around age 30, things in life were going well. Granted nothing was perfect....I wasn't rich, in love, religiously grounded, or overly motivated to solve the problems for all mankind....none of those things seemed that far out of reach. Not as far as they seem now. Funny how those things get exponentially further away the more you want them. There I was....just a bought a house, making pretty good money, not really feeling the impending financial crash headed my way (whenever the stockmarket crash happened around 2000 or so, just a short time before that)....and I'm about to purchase my first life insurance policy. I'm going to protect my future loved ones. The biggest concern I had at that time, was that I would have to reveal to my mother that I smoked because she was basically filling out the forms. While it was a dramatic revelation for me, it matter to her very little. I didntt know that what I really had to be concerned about was not yet revealed and when I found out it would rule the rest of my life (at least so far, but I'm pretty sure from here out as well).

The insurance company politely refused to offer me coverage due to a detection of protein in my urine. While it was a little upsetting that I would not be getting insurance, it was not a big surprise....this was an indicator in my childhood that I had IGA Nephropathy. IGA Neprhopathy is a kidney disease for which there is no cure, but by all indications, 50% of the people who just goes away on its own....the other 50% end in kidney failure. By the time I was an adult all of my symptoms had disappeared, so I operated under the assumption I was in the luckier half of the draw. I went to the doctor, and guess what he told me....guess what he told me....(he didn't say "son you better try to have fun no matter what you do")....he said I had to go see a nephrologist (kidney doctor) and soon. Weird....because I had been to the doctor on a fairly regular basis, and surely if this was some advanced form of IGA Nephropathy someone would have noticed it sooner. But that's what it was.

My kidneys were operating at 15% function. Failure was life would from hence forth be about dialysis and transplant. Both shitty options by comparison to having your own working kidneys. I managed to stretch my 15% out over about 4 or 5 years, and I've pretty much reached the end their functionality. The old transmission is stuck in 2nd gear and I'm on the autobahn trying to 100 mph. I'm getting sick....tired, nautious, skin irritations, tired some more. You will get to read here about my last few days leading up to transplant....probably not very many days of my time in the hospital.....the boring 5 to 6 week of my recovery time, and then my life as an Immnosuppressed human walking the earth trying to avoid infections.

I'll try to keep it up beat.

posted by othur-me @ 4:56 PM   0 comments
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