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Faith, Hope and Gaff Tape

Well the last little debacle had me in the hospital for the better part of a week, with pills, needles, IV’s, X-rays and blood tests galore. Like a little cirrhosis Mardi Gras sans parades, glitter and awesome food.

Turns out I was dragging around a case of pneumonia which was making everything go a little nutso, physically.

So they loaded me up on antibiotics then vacuumed out seven and a half liters of fluid from my diaphragm, which was very interesting and made me feel considerably more comfortable for a while. Unfortunately, I did start to swell up again, but not to the capacity it had been. The docs decided to tweak out my diuretics to deal with it.

Now, if you have never been on diuretics, let me tell you…it is quite the experience. All day, all night you get sudden and very urgent needs to, well, empty your bladder. This last change had me literally running to El Bano every 30 minutes.

Whooohooo! That is SO Rock and Roll!

Well, no. But it is, along with a lot of other minor and major indignities, necessary to keep the docs happy and this wobbly bit of flesh and blood as healthy as it can be under these laughably absurd circumstances.

So, they discharged me with a fistful of prescriptions and here we are, back to the varying day to day of feeling OK, feeling really bad and wondering how the people who are really bad off with this do it. I have a LOT of help to get me through the days (even when I am being an ass) and that makes a big difference. Without family and friends there are many times when things would be much harder. Keep that in mind next time you are being blatantly unreasonable about something inconsequential.

Next week, it is off to transplant evaluation. I am guessing that means more pills, needles, IV’s, a CT scan and blood tests. “You gotta do, what you gotta do.”

Meanwhile, I go through time feeling like I am being held together with nothing but faith, hope and gaff tape.

It will do.


Post Toasties

Just a quick note. I had been working on a nice little post about my birthday and this liver drama, however I ended up in the ER on my big day and I am still here.

Details and something amusing, morose or both when they spring me.

The Theory of Perpetual Motion

I have a well-used theory that I use under nearly every circumstance. It is not a particularly good theory, mind you, but it has dragged me out of a number of situations when most people would consider simply giving up.

Admitting defeat has never been a part of my psychological makeup. Perhaps it was reading Mushashi’s Book of Five Rings and watching Butch Cassidy and the Sundance Kid over and over during those formative years. Who can tell what makes up what we become in the end.

Now that I am faced with my own little battle with myself (non-alcoholic Cirrhosis aka NASH for those new to the party), life is getting weirder that it normally was. Not that I have ever had a normal life, but this period of time is getting to be pretty special, with all the little indignities that come with an acute/chronic medical condition rearing their ugly heads at pretty regular intervals.

And do not get me wrong, there are some days when I feel relatively well, and I relish those days like nothing else. However, those days seem to be getting fewer and far between…but I try not to let them slow me down.

That is where the theory comes in.

You can be in the middle of the desert, hobbling on a broken ankle, no food, no water, no shade and fifty clicks to the nearest human being. So what do you do? Some folks would just pick a spot, sit down and hope that someone came along before they expired.

I am not that guy. I limped my butt all the way out of there. I was one giant oozing, peeling burn with a bone sticking out of my foot, but I made it.

Homeless in Detroit in the dead of winter. Well, not truly. There was the front seat of a compact car with nothing but fumes in the tank. I never thought of tucking tail. I walked around until I found the oven exhaust vent for the WonderBread bakery plant and planted that car right under it. Warm? You bet. Made me really hungry though.

So now, I am doing the same thing. The loved ones are all rallying for me to take it easy, take time off, rest, sleep, conserve what little I have.

And I did stop yesterday. It was Christmas. I had opted out of the massive gathering (I will not bother you with the details of the symptom that kept me homebound). I tossed together a few things for lunch and after noting there was *nothing* remotely entertaining on the thousand channels of satellite idiot tube, figured I would have a quick nap.

Sixteen hours later I woke up feeling like I had been beaten with hammers and run over by a truck.

I broke the rule. Perpetual motion…someone in motion stays in motion, despite any amount of exhaustion, pain, confusion, sickness or anything else for that matter. You stop and it all comes crashing down and now it is all uphill to try and build up that momentum again.

Other people have different schools of thought, but this one is mine. And it works for me, has for years.

One step at a time. One foot in front of the other. Steady pace. Keep moving. Stay alive.

That is what it is all about.

The Call

I was expressing my bad judgment this morning by shopping in Wal-Mart for stocking stuffers when I got the call from UAB Transplant Clinic.

Not “THE” call, mind you, but the call from the transplant coordinator wanting me to come in as soon as the holidays are past. From what I am gleaning from the conversation, this is for the ‘Evaluation,” where they do all the tests and bloodwork over again for a fresh baseline which will be used by the transplant team. The team will then decide to list, or not list me at this time.

So, there I am in the canned foods aisle answering a half-hours worth of questions so they make sure they have the current personal information in order. Half of my brain is panicking and running around my skull jabbering like a rabid monkey, while the other half is looking at two cans of rutabaga thinking, “I bet Blanche is out of that.”

My life has become surreal. Truly.

The encephalopathy does not help with that feeling, either. It is like playing a giant game of Twister with your brain. “Right hand on red dot.” “Left foot on yellow dot.” “Oops! You fell over. You lose.”

On a positive note, at the least the UAB have it wired tight and are moving in a direction. Maybe not forward right now, but moving none the less.

The flipside is that call kicked the Christmas Spirit right out of me. I spent the last couple of days trying to warm up to a good ‘Do your best to ignore the symptoms while staying on the prescribed medical track,” sort of thing. Now my mind is filled with thoughts of needles, scans, probes, scopes and the million little indignities that have to happen for them to do the job right. Takes a couple of days to get all positive about all that, but that is exactly what needs to happen.

Because every day, I see people who are far worse off. I am fortunate to have family, friends and a mostly solid grip on hope. Hope for a respite every now and then and hope for a positive conclusion to this little internal drama.

Despair is not an option. Hold on to hope. And give the mutt some schnacks. That is what I do.

And for those of you reading this, I wish you a Very Merry Christmas, surrounded by all manner of love and good things.

The fall is going to kill you

Keeping up with the news lately, you have to wonder if politics is wandering closer and closer to professional wrestling. It has degenerated from, “Here is what I believe and here are my ideas, vote for me,” to a general blood-sport where turning traitor to your own promises to constituents is normal, if not expected.

Personally, I believe it might be beneficial to the public if the Senate and House floors had a wrestling ring installed. Spencer Bachus whacking Speaker Boehner with a folding chair would be worth the pay-per-view charge. A little action sequence while being sold out by people you voted for would ease the pain a bit, especially when he Speaker is chumming around with Pelosi to get his agenda through.

Seething mad or weeping bitter tears at the political class. You place your bets and take your chances, but essentially the result is the same…the Average American will eventually be sold out by their representatives (of either party) in the name of political expedience.

I am reasonably certain this is not what our Founding Fathers had in mind.

Medically, things have taken a bit of a downturn as of late. I have started showing a lot of the classic signs of end-stage liver disease…intense rashes (cholestasis); abdominal swelling and shortness of breath (acites); water retention in the extremities (edema); loss of muscle mass; on and off dizziness, tremors, fatigue, confusion and memory loss (hepatic encephalopathy).

Not fun.

The one thing I always said I could not stand was to lose my mind. Pain? Physical problems? I can gut it out with the best of them. However, it is one thing to lose your train of thought, it is quite another when you are typing and spell check is just screaming at you because you keep missing the keys. otally forget about trying to sign my name legibly. he suck-factor is getting up there.

An old comrade of mine is about 8 weeks out from the transplant he received at Emory. he brief glimpse of what happened before he got it makes me twitch, quite frankly. he liver is one of your busiest organs and the side effects of having it not working are stunning. It may very well be a misguided train of thought, but I am more concerned about getting to the point of transplantation than I am of the surgery and all the post-op stuff.

It reminds me of Butch Cassidy and the Sundance Kid (one of my favorite movies), when they are getting ready to escape from pursuers by jumping off a cliff into a river:

Butch Cassidy: What’s the matter with you?
Sundance Kid: I can’t swim.
Butch Cassidy: Are you crazy? The fall will probably kill you.

Survival percentages for the actual transplant surgery are pretty good. Post-op is pretty good. Percentages for the period prior to surgery…well, they are not as good. I used to take it one day at a time. On a rough day, I take
it one hour at a time.

And yes, it feels like the side effects are ripping me up these days. hat is to be expected, I guess. What energy I had to fight it all off is being sapped away, leaving me face to face with frustration as my own organ tries to do me in.

The upside is that I still have a few good days now and then. I hold on to those like a dog with a bone. Hope is one of those things I will not lose. I have been at that edge before, and staring full face-to-face with defeat, I never gave up hope. None of us should.

The Week in Review


The Week in Review –  The abridged version

In world news, the so called ‘Islamic State’ has teamed up with Al Qaeda, which is a very bad development. In a nutshell it means that IS and Al Qaeda will stop fighting one another and focus all their resources on destroying the rest of the Middle East (and the west during/after that) Both terrorist groups are chewing away at just about everyone in fights against, killing, enslaving, maiming and torturing civilians along the way. Meanwhile the world watches, horrified, and does little to nothing. That includes the rich Islamic countries that have yet to realize that they are next.

Already, attacks from Islamic fundamentalists in The US, Europe and Asia are on the rise. The media continues to regurgitate the same talking heads repeating variations of how ‘Islam is the religion of peace,’ and burying the stories on page six under headlines about ‘workplace violence.’ And again, organizations like CAIR and several anti-defamation groups who are outside the Middle East never seem to condemn the attacks.

Here in the United States, the big deal of the week appears to be whether or not President Obama will use an executive order to grant an all-out amnesty on nearly five million illegal aliens who have broken who-knows-how-many laws sneaking into the country. Some estimates say that nearly have been previously deported and a large majority of those have ties to criminal gangs in Central and South America.

There are way more than a handful of cases of illegals committing all manner of crimes right down to killing (intentionally or not) Americans. Having had one with no ID, license or insurance smash her car into Carolyn’s car (destroying it) and have absolutely no consequences gave me just the barest taste of what some people are going through. This is a huge problem and The President seems to want to make it even worse.

In my own little world, my liver is still wreaking havoc on me. However, there was some good news from the Transplant Clinic. My lab work is still headed downhill, but the mystical mathematics used for the MELD Score (Model of End-stage Liver Disease) remained solid. The problem items being that I am protein deficient and my ammonia level is climbing a bit, both of which could lead to some problems if not dealt with.

The MELD is the biggie, though. That really is the sole factor in determining if/when you get a transplant. The higher the score, the worse shape you are in and the more urgent it is that you get a liver. All the other side effects and levels you may have are discounted until (at some transplant facilities) you get to the fine points of blood type, age, body size and a few other items.

The real balancing act of it all is to get a liver while you are still strong enough to deal with the surgery and recovery. And while you want to keep your own organ as long as possible, you do not want wait so long that you are bedridden, weak and have issues with the surgery or a have a prolonged recovery time.

The usual side effects are making things a little dicey on a day to day basis. On bad days, the overwhelming fatigue, ridiculously itching rashes and other minor (and some unseemly) accents in this little symphony of a malady make it so that it takes pretty much everything I have to get through the day. Luckily, on the good days I am positively spitting nails, thinking ‘What is the big deal here?’ until a bad day clocks me and reminds me that one of my own organs is very much trying to kill me.

They say that I am an excellent candidate for a transplant and I still take all the meds and do exactly what they tell me to. It is an immense pain in the butt, but at least I am waking up every morning and doing what I can to keep everything together.

For now, that is enough.

These Days

These days, the world seems to be dead set on destroying itself. From the atrocities committed by the likes of Boko Haram and ISIS, to the bungled handling of Ebola and Enterovirus, all the way down to the members of the US Government who are “changing the face of America” to something akin to a welfare state, I can barely stand to watch the news.

People appear to simply not care about it. They bury their heads in their smart phones and mumble that it doesn’t affect them.

And then it does. It might be your neighbor, the nurse who treated an Ebola patient and is now under quarantine. It may be the kid down the street, who ends up in the hospital with Enterovirus which appears to be coming from illegals crossing the southern border unchecked. It could be the locally-owned business you like to shop at, where government taxation and regulation has forced them to close the doors. It might be your relative, who just had their job shipped to India where someone will do it for a fraction of what they were making.

Everything matters, people. You give your opponent an inch and he will more than likely take your butt to the woodshed and smack you down.

And in my own little liver-based drama, the hits just keep on coming. This week’s tests came back and the results were not particularly good and they have added more medications to deal with it. There is nothing quite like having the wind knocked out of your sails first thing in the morning, especially when you were expecting the opposite. The short version is that I am declining at a faster rate than I was previously.

In two weeks, I have a new batch of testing to be done over at the transplant clinic. Let me tell you, I am a little tired of waiting rooms, needles and radiation at this point, but people who deal with these situations for a living say that I need them, so I will totter off at 4 AM, bleary and red-eyed to do what they say.

I have heard from several people who have undergone what I am in the midst of, and it appears that things will be getting much worse before they get better. It is a long road, but ultimately you do get better after a transplant. I can only hope that a new liver comes through while I am still relatively strong, as opposed to bedridden in some hospital room.

More later.

FYI, is you want minute to minute updates, follow me on twitter @scooteroi. I tweet more than I post here…and we will not even mention my hate-affair with Facebook. Bah!

Sooner as Opposed to Later

We went off to the Liver Transplant Clinic at UAB’s Kirklin Clinic at 0-Dark-30 yesterday. The place is huge, efficient and everyone was very nice.

And that marks the high point of the day.

After drawing a bunch of blood, there was a very extensive forty-five minute ultrasound. Then it was up to an exam room for an evaluation with the Doctor.

Keep in mind that there was very little waiting time between any of this. For such a large facility (and I do mean large) there was no wasted time between any of these events. I was impressed. I’m sure there are times when it comes off the rails, but for us it was a good experience as far as the timing goes.

Now for the nuts and bolts of the matter:

The short version is that the numbers are not great and they want to do the transplant sooner as opposed to later.

There will be some time while they track the blood work to see the rate the liver is declining. Right now I am just a hair under where they would place you on the list (my MELD is 13, a score of 15 is where you normally become a candidate). And there are still more tests to do as well, contrast CT scan and whatnot, just so they can be sure to get a complete picture of what they are dealing with.

They also have me changing my diet again and going with more protein than carbs (do not believe everything you read on the interwebz, people) and they want me to get physically stronger before anything happens, which will be tough considering how fast I run out of steam these days. I am hoping the change in diet helps with energy levels.

On a mental/emotional level, I was not prepared to hear this news. I still have more good days than not, however the potential complications of not having a fully functional liver are bad and in the Doctor’s mind (I am assuming), outweigh the complications of an actual transplant. I am still processing all the minutiae and coming to grips with what I did not expect to hear.

Yeah, and it is distracting. I almost brushed my teeth with Neosporin last night.

The gist is that if I am approved by the transplant committee and if they can find a matching organ, it appears that I will be at the pointy end of a scalpel sooner as opposed to later.

Bob Mayo


Bob Mayo

August 25, 1951 – February 23, 2004

Happy Birthday, Bob. We all miss you.

A Dose of Gloom and The End of the West

(In response to the folks who are clamoring for more of the old conjecture and invective, I offer up the following post.)

“Man’s ego is inflated, his laws are outdated, they don’t apply no more
You can’t rely no more to be standing around waiting
In the home of the brave, Jefferson turning over in his grave
Fools glorifying themselves, trying to manipulate Satan
And there’s slow, slow train coming up around the bend.”

-Bob Dylan, “Slow Train”

I have a saying I have been using lately:”We have front row seats to the end of the Western World,” which I semi-lifted from the movie Armageddon. I find it particularly apropos at this particular moment in history. With the cratering of American military power, the ridiculous foreign and domestic policy, a tottering economy and a Peter Pan President, we appear to be running headlong into a disaster rivaling the fall of the Roman Empire.

It is hard to imagine what will set it in motion. Economic or racial strife. Extremists homegrown or foreign. An out and out civil war against the Federal Government by the states or groups of individuals. An attack by a foreign government by nuclear, biological or chemical means.

Perhaps that is what gives me pause. There are too many possibilities these days. Twenty-five years ago, there were (in my opinion) only a few causes for that kind of disaster and most of those revolved around the Cold War. Now it seems like there are enemies under every rock and in every shadow. This is definitely not a good situation for America or the rest of the Western World, because when America goes down, I speculate that the majority of the west will as well.

On top of that, I find myself in a bit of a quandary. It appears as though the bulk of the government refuses to follow the laws of the land. From the IRS deleting incriminating information, police forces arresting journalists and citizens for simply filming protests to the absolute refusal to impose any immigration laws whatsoever, I find myself wondering “If the government does not follow the law, why should citizens?” If the IRS can “lose” information without any consequences, who is to say that a citizen cannot simply say, “Sorry, I lost that paperwork. Hey, you guys do it all the time!”

(Do I hear Federal Agents at the door right now?)

The government should be protecting the rights of citizens. Instead, we have a bloated, wasteful, counterproductive bureaucracy which limits freedom instead of protecting it. They have no problem elevating discord to levels equal to the worst moments in human history. One would expect that they recognize this and bring it to a halt, yet they seem set upon making greater repression and waste.

Over the last several months, I have been brainstorming through history and current events hoping that I can unearth some plan to somehow bring us out of all this, yet nothing comes to me. I am sure that there are people with bigger brains, better information and more power doing the same, but I have yet to hear anyone yelling about finding the answer.

And that is a bit frightening to think about, that the End of Democracy may be closer than I care to imagine and right behind that, the End of the Western World.

What can the normal, everyday American Citizen do? Do the best we can with what we have. Take good care of our families, friends and neighbors and hope that it is all just a slow train coming.