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Some Recent Advice From a Friend

I was really moved by this e-mail sent by a buddy who's never let me down when it comes to straight talk.  This is from the heart, and I wanted to share it.  He's also always good with the levity.

Hey Matt,
Sorry to take so long to get back to you.
First of all, sorry, dude!  That sucks.  My heart goes out to you.
Second of all, I would totally consider giving you my liver.  Or my kidneys.  Well, okay, scratch the liver part.  
I'm not sure what the implications are with the whole diabetes thing.  But if you are having a hard time finding a doner, I will talk to my doctor.  Seriously- just let me know.
And third of all, I thought I'd pass along some unsolicited advice, one sicko to another.  Since I've been living with a disease for, yes, 21 years (my diabetes can drink, now), you damned well better listen to me!  
The thing that has allowed me to be successful with diabetes if funny- it's probably the biggest best lesson I took away from my Landmark stuff- and yet I never realized that I was doing it with diabetes until I consciously started doing it with the rest of my life.  It sounds simple, but it's HUGE.
And here it is:  Don't add meaning to your disease.  There is no meaning- it just is.  (the Landmark lesson being that we add all meaning to everything that happens in our meaning- less lives)
Our brains can fuck us over with the "Why Me" question, you know?  In fact, I remember at Tracey's service when Brandon was reading from her journal- I was really proud of her when she wrote that she figured out there wasn't any meaning to her cancer- she just happened to get it.  
I only remember once asking why me- back when I was 12 or 13.  It really sucked.  Maybe I made a decision not to go there again- don't know. And I see people who haven't done well with diabetes- they eat like shit, or drink a bunch, don't care about their blood sugar.  I almost promise you it's because they ask why me, start adding meaning, and then get pissed about it, feel sorry for themselves, and end up where they end up, without any feet or something.
On the reverse side, because I'm a cult Landmark fanatic, I practice adding my own meaning and way of being to life.  So I choose to focus on seeing diabetes through a filter of honoring the people I love- and when I add that meaning, taking care of myself makes sense.  It's not something I "have to" do, or something I guilt myself into doing, it's something I get to do.  
So-- back to you.  You'll do well with this.  I know you will.  
And I also invite you to think about what kind of meaning you want to add to it.  All there really is is that your kidneys don't work right, and the rest is just added meaning.  And I also invite you to think about your family and what a gift to them it would be to have you as a healthy guy with a great outlook on his life.  
And if you ever want another disease ridden person to talk to, I'm here, man.  :)  Seriously.  I'm yours to count on.
Hope that helps.
Take Care, and keep me up to date.  And if you want my kidney, just ask.  (although you may get diabetes.)  (but probably not)
Tyson

"Air Force One" and Fighting Bad Guys

You know how in epic movies, and classic literature, around the 2nd act of the film, or final chapters of the book, the protagonist always has one more battle either against himself or the antagonist before finding solitude? For instance, the movie you're watching leads you into the comfort that things worked out for the hero; but you know this isn't the end because there's 25 more minutes left.

I watched Air Force One starring Harrison Ford as President of the United States, and Gary Olman as a deranged terrorist who hijacks the un-hijackable plane. I was suffering another unexpected stint in the hospital last week for "surgery complications" associated with my catheter. (admission: I was on a really heavy dose of pain medication which would have made Sandra Bullock's performance in Speed 2 seem Oscar worthy).

In a classic final act, the President of the United States just killed like 11 terrorists including the ring leader, Olman, who was seriously pissed the whole time. Out of fuel and plummeting towards the ocean, we think the President might get off Air Force One alive - - the odds being really good since Harrison Ford's never cast to get killed in the end of the movie. Anyway, out of fuel and plummeting towards the ocean, one of his staff pulls a gun and starts offing the crew. We're about 1,000 feet above the ocean, and Harrison Ford manages to thwart this dude by avoiding some bullets (for the 16th time) and clipping himself to a wire connected to a rescue plane. Our President lives to see his wife and kids; bad guy goes down with Air Force One, and Glenn Close (playing the VP) doesn't end up becoming President. The end.

While I watched, lying in my hospital bed, coming out of my pain med induced inebration, I couldn't help thinking about my final act. Not dying or anything terrible like that. I mean death resonates a little (it's sort of inevitable when you're having every test in the book to rule out heart failure) But I am resolved to a happy ending. Anyway, when Harrison Ford is finally reunited with his family I think of my reunion and this disease that's been playing Gary Olman's part in Air Force One. I want to kill the bad guy and get off the crashing plane too.

My hospitalization is short this time. Mind altering chest pain and cramping that forces me into a cold and understaffed Burbank ER last Friday at 1AM is not a heart attack, nor is it even a once thought pulmonary issue. It's myalgia. Muscle pain. That's it. Gotta rule out a lot to get to muscle pain.

I guess all the ruling stuff out coupled with the intense pain medication all led me to my deep connection to the good triumphing over evil themes in Air Force One. Otherwise, it's just an over-the-top, predictable action flick with a big star.

I'm home now, reunited with my family. My mom is here with us for a while. My son Jax just said he's going to marry his little sister and "stay with her for ever and ever".

Feels a little like the bad guy is dead for now.

A "New Normal"

I thought about setting up a fresh blog to post about my current health issue. I decided on this blog, originally created to rant, evangelize and prophesize on digital media would work just as well. Read below if you're curious about my opinions on that topic. Otherwise, ignore what preceded and just pay attention to posts titled "A New Normal", "My Kidney Translplant", "Dialysis 101" "How I'm Feeling Now" (some of those sound like good future titles).

If you're reading this without knowing anything about my current health status, I have stage 4 kidney disease (stage 5 is acute failure). I owe this to a genetic disorder called Alport Syndrome which currently affects about 1 in every 5,000 people. I am on a national waiting list for a kidney transplant and am being evaluated by the Comprehensive Transplant Center team at Cedar's Sinai Medical Center in Los Angeles for a living donor. I write now having just returned home from my second trip to the hospital in February.

I was admitted to the hospital two weeks prior after my creatinine was up to 5.0 and my BUN (blood urea nitrogen) was around 120 (these are both metabolic measurements in the blood that, when high, indicate severe kidney disease). With normal BUN measurements for adults being 7-20, 120 makes you feel very sick. My symptoms ranged from nausea, dizziness, fatigue, and extreme hunger.

After a 4 day stint at Providence St. Joseph's Medical Center in Burbank two weeks ago, my BUN came down from 120 to 73 with the assistance, at doctor's orders, of nearly 9 liters of saline pumped into me intravenously to help hydrate me. After things had plateaued in terms of my blood toxicity, doctors released me but warned that dialysis was probably on the horizon. The thinking: My BUN and creatinine would likely climb back to dangerously high numbers soon.

Two weeks later, the blood work showed kidney function declining again as predicted. The time had come for dialysis; the only means to rid my blood of the horrible waste materials built up that my kidneys were unable to clean and start me on the road to feeling better. I had sort of been preparing myself for this inevitability for many months.

2 years ago, my creatinine was around 1.4. This reflected a "high-normal" number. Blood work was closely monitored by my nephrologist (kidney doctor), Dr. Noha Barsoum who started getting concerned about 50-100% increases in my creatinine over 3-6 mos periods. 2.7 last summer, 3.7 after the new year, and a solid 5 in February. I had to get honest with myself and accept that I wasn't feeling "okay". Something was just "off". There was a cloud over me in terms of my daily well-being. I knew some of what I was feeling might have be psycho-somatic, brought to the forefront of my mind by the doctor's news that my kidneys were failing fast. I started reading more and more about how amazing people felt who suffered from kidney disease for years and then went on dialysis or had a transplant. They didn't realize how sick they were until they were better. My day was coming.

On Friday, February 20th I was taken into surgery to have a permanent venous catheter inserted in through my neck. Over the last two days, to be exact, I was put on dialysis twice using this new catheter as the gateway to filtering my blood. The surgery for this catheter is uneventful and routine as surgeries go, but for me it has been anything but routine. The recovery has been painful and really inconveniencing. I am managing fine, but I was not really prepared for this to be such a major ordeal. Nor was my wife prepared. The post-op was horrible for her as I was in a lot of pain and not getting the pain management from nurses we felt was needed. Several morphine doses and vicodiine's later I was fairly pain-free, but now mentally useless (thanks narcotics). Without much time to recover from the surgery and anesthesia I was put on my first round of dialysis. That first round of dialysis, I was told, could result in me feeling better immediately.

At 1:30AM Saturday morning I lay in bed by myself and actually giggle with a new found energy. Several hours earlier, I had been lying in bed stoned on narcotics, still in pain and hooked to a dialysis machine, but after that first round of treatment, I now felt good enough to get out of my hospital bed and walk to the bathroom. I just felt like a fog had been lifted.

I had a second round of dialysis on Saturday for 3 hours. My blood work has since shown my BUN down from 105 to 68 and falling!

I have clearly hit a major milestone in my treatment. It's been a long time coming. Alport Syndrome has been this ticking clock on my kidneys for over 36 years. What started with some microscopic blood detected in my urine as a kid has evolved into a full-blown kidney malfunction being aggressively treated by excellent doctors. I also have incredible health advocates supporting my recovery.

My mom has been amazing as a guide, coach, teacher, and as usual, an incredible mother and grandmother. She's held my hand from afar, flown to our aid at home, and been on the phone with me everyday to get updates. My inbox is full of her links to sites exploring my disease, diets, and treatments and my in-calling mobile minutes are maxed talking about how I am feeling. She also recently gave me a gold necklace her late father wore while recovering from Hodgkin's Disease in the 60s. The gold necklace contains the Hebrew word "Shaddai" for God of Strength . It was given to him by his wife, my Bubbie. My mom wrote on a note to me w/ the necklace that she hoped the necklace would protect me during my journey to better health. She wrote that it's what she wants for me, to protect me, as would my bubbie and papa. It broke my heart. I wear it now. It's just about the most moving thing my mom has ever done for me.

My wife Ryan has been a rock. She's been supportive in just the right way. Not too overwhelmed, but just overwhelmed enough to let me know she's in a new strange place in her life too. I anguish at what it must be like to see me go through this; even bathing me while I am equipped with delicate tubes coming out of my chest that absolutely cannot get wet. I'll never forget her for her kindness, patience, determination and bravery. : )

And last night, my four-year-old son, Jax, looked at me lying in bed in some discomfort and said, "it's alright Dada. I'm right here. there's nothing to worry about". Words I am sure he has heard his mom and dad tell him during his time of need. If I didn't already know what a sweet, special soul my son possessed, I was reminded last night.

So goes it for me now. I will stay on dialysis until I get a transplant. I will go to a local dialysis center in Burbank on Tues, Thurs. and Sat. each week for 3 hours at a time from 5:30AM-8:30AM. If you're bored and want to share a cup of coffee with me during part of my morning dialysis, visitors are welcome, coffee is free, and I'd enjoy the company. I will start feeling better and better. And as friends recently relayed to me about their friends' experience with dialysis, my life will return to a "new normal". I like that. I find that encouraging as a matter of fact. I can handle a new normal much better than the alternative.

I Phone - - the big snob, and an extension of the self?

Apple applied for a patent late last month for a system that would allow customers to place coffee, fast food or merchandise orders from a wireless device, then jump in front of those ordering in person when picking up their order. (source: Cynopsis Digital, 1/03/2008 - - thanks Wayne)

Okay, I am already convinced that I Phone users are really proud people. Those who own one react as if they work for Apple whenever non-owners are critical of the I Phone's poor web browsing speed (personal experience).

As if it wasn't enough that you have to act all impressed when a friend or colleague shows one off, now you have to step aside at Peet's when they order a Soy Latte from their I Phone while you're in line and they're still parking their car.

I'm not impressed.

Is there a Web 2.0 bubble? Keep an eye on that "Beacon" of light

I grabbed this video from BoomTown. If I had a valuation, I'd hate this video. Alas, I am a more like a fraction of a fraction of the pie kinda guy. I'd take that, come to think of it.

Made Kosher for Hanukkah

What goes good with latkes on Hanukkah?? HAM! Juicy, spriraled ham. Thanks Ralph's Grocery store.