Thursday, October 22, 2009

October 22, 2009 - Birthday Blogging

My dad always advised me to keep a journal after the first time I got sick with this crap, so many years ago. I guess I was always too lazy to follow his advice, but I'd like to begin to remedy that with the impending certainty of getting on the liver transplant list. It seems as good a time as ever to record something for posterity, especially if it can give a bit of levity to others in the same boat.

Just like everyone who has had to suffer from a life-threatening illness, I never wanted to be sick, or different, than anyone else. For a lot of recent years I've tried to pretend that I wasn't. But after my last stint in the hospital a few weeks ago, I've come to realize that there's just no way to outrun one's fate. The best I can do now is make peace with it and keep my all-important sense of humor in the days ahead. Laughter is the best medicine!

So where to begin? I suppose it makes sense to tell you a bit about where I am currently in life. I'm 39 years old, married, living in beautiful Austin, Texas, and working as a Producer in the Creative Services division of the local ABC news affiliate. My wife, Amanda and I are very active in the arts community, where I serve on the Leadership Council for a young professionals' group called Catalyst 8, and as Community Outreach Co-Chair for an organization called Strata TX. I also work with some friends to run a music website called ATXLive.com that features video journalism stories to promote the local live music scene. Amanda and I have three rotten but lovable dogs, and we all live in a beautiful house with a huge woodsy backyard in South Austin. Life is busy. Life is good.

It's funny how God can slap you silly when you expect it the very least. I've made some great personal strides in my career and community life during the past year, and Amanda and I have been looking forward to starting a family soon. I really thought I had my disease under control... I hadn't had a bleed since 2001. Then came that one fateful and shiteous Wednesday, about a month ago, that reminded me just how fragile my health situation is!

I had gotten my flu shot at work and went home feeling somewhat strange. I chalked it up to the shot, but after two more days, I knew this was not the case. That Friday morning I began throwing up blood profusely, and I knew from two past experiences exactly what was happening. Amanda got me into the ER as quickly as possible, and we got a transport to Scott and White Hospital in Temple, where my team of liver specialists hold residence.

After losing about 1/5 of my blood, I was given a transfusion to rebuild my hemoglobin a bit as they stabilized me with a drug called Protonix, which seems to stop any internal bleeding pretty effectively. Transfusions are a strange thing: You can literally feel as if your lifeforce, chi, soul, or whatever you choose to call it, is fading away from your physical body, and then, almost instantly, you get some fresh blood in you and the whole room, everything in your field of vision, starts to brighten up. You instantly feel alive again... strange stuff. I totally get the Vampire thing.

After some painful and grueling procedures (with no anesthesia! Jerks.) they determined that the bleeding was not coming from my esophagus, like before, but from somewhere much lower in my stomach, which was a major problem. Well, that's not good.

(TIMEOUT for a quick science lesson: My disease specifically forces the bile ducts to narrow over time, which causes toxins to backflow into the liver, resulting in scarring and increased portal vein hypertension. This basically means that blood starts to flow backwards into the esophagus and stomach, until the pressure finally causes those veins to burst. An esophageal bleed is a much easier fix than one in the stomach. They simply go in and snap tiny rubber bands around it in a procedure called sclerotherapy. Eventually the varices disappear and the rubber bands just fall off. This was the case the first time I got sick in 1995, and the second in 2001.)

Unfortunately, that was not the case this time. The doctor informed me that they could not find the source of the bleeding, and
recommended a much more intensive procedure the following morning. Crap. Here we go.
After a long, sleepless night, I was greeted by radiology surgeons who began to brief me about their plans for me. They wanted to move forward as quickly as possible with something called a TIPS procedure, where they would essentially go in through my jugular down through my liver, into the lower part of my stomach, and place a small valve to widen the portal vein in an effort to release the extra pressure. Huh?

So, I guess they have to tell you this stuff, but it was a bit worrisome, given my current state of mind: The doctor told me "There's a ten percent chance you won't make it through surgery, and in fact, the last guy we worked on didn't turn out well. Not good at all. Ready to go?" Are you freakin' kidding me? Let's everybody just slow the hell down for one minute.

Obviously, I wanted to wait for my wife to return from her hotel that morning before making any big decisions, so they gave me a little time until she showed up. We consulted with the docs and came to realize that this basically was our only option.

Five hours later, I was waking up with an insatiable thirst for a Sprite and about six IV tubes running out of me. I was sore, running our of free veins to poke, and aware once again, as my feet hung like dead weight over the end of the bed, that hospital beds are not made for 6' 4" guys. But the surgery was a success... I was in a great mood to be alive!

That night was spent fantasizing about sips of water, crazy combinations of Sonic drinks, juice, anything... I hadn't had a sip to drink in almost two days now! Crazy questions invaded my weakened, delirious mind... things like: Would they combine Grape and Watermelon flavors in a Slushie format if I asked them to? Could a Cherry Limeade and a Cherry Lime Slush be combined into one drink? Is it possible for me to have any of these before my throat permanently closes up and my chapped lips fall off?
Finally, the following morning, the operating radiologist came in and cleared me for that much-needed Sprite... it was like sweet, sweet rain from heaven!

I spent the next day on a liquid diet until they decided to wean me over to solid foods. So, here's a worthy question: Why does hospital food suck so bad? I would imagine this stuff is below prison-grade quality. These fools decided that my first solid meal would consist or a rubbery husk of garlic bread with spaghetti and meatballs, the perfect thing for a sour stomach with acid reflux! There were no vegetables to be found, unless you count the mashed potatoes and gravy that came with it. The next few days were a mishmash of similar poorly-paired culinary nightmares: a greasy pork chop with butter, french fries, and cranberry sauce? A hamburger with an extra side of garlic bread, pie, and two sausage links? I can't eat this shit when I'm healthy... why the hell would I eat it now? Although extremely healthy other than the liver stuff, I figured I would leave with heart disease if I continued to eat this junk, so I had Amanda grab me some real food.

Wednesday, after a lot of bad TV and naps, I was finally discharged and headed for home, with the recommendation by my team of specialists that we pursue a liver transplant as soon as possible.

To be continued...

3 comments:

  1. Hey Pat--

    This is Chris Diaz. I think writing this blog is a brave thing you are doing, and I look forward to reading it regularly in the weeks/months ahead.

    I am not a religious person, so I can't say that I can pray for you. You are, however, in my thoughts. I hope you can keep your sense of humor through this ordeal. That's certainly more than I would be able to do if I were faced with your situation.

    Lot's of people are pulling for you, but then I'm not telling you anything you don't already know. Good luck!

    Chris Diaz

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  2. This made me cry a bit Pat. You are family to me and I want to have more time to know you better as adults. I love you and hope nothing but the best. Here's to seeing you soon!

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  3. Wow, thanks guys! Funny that the bonds we made more than twenty years ago are still as strong today. I love and respect you all... and I know I'll need your support in the upcoming months. I can't tell you how much it means.

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