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Test, check. Is this thing on?

I am not known for being “Mr. Patience” or anything. Anyone who knows me well can tell you that after a few minutes of waiting in line, waiting on hold or that little bit of time prior to any appointment, I will more than likely grind off a bit of tooth enamel.

When the waiting is in a hospital and there are teams of very intelligent people trying to figure out what is happening inside me and devise a course of treatment, it is a bit rough. You do not want to rush anyone as a misdiagnosis could be very, very bad. Like Miracle Max says in The Princess Bride, “Don’t rush a miracle man, you get rotten miracles.”

Fast forward to this morning.

After a solid week and who knows how many tests (and needles), my natural impatience is turning slowly to serious concern. While they have me on a course of treatments, there is so much happening with the different organ systems that there really is no solid, “Hey, this is what is wrong,” which would make anyone a little uncomfortable.

The upside is that after some more IV’s and observation, I should get sprung from this joint. While the folks here are very nice, I flipped over to stir-crazy mode days ago and we are already stuffing our personal items into a bag.

I know there is more of this to deal with in the future and I am very lucky for the family and friends whose moral support is invaluable to me while I slowly sputter along.

More later.

No Conga Line?

In the hospital, there is no conga line or punch bowl. Just a building full of people who are damaged in some way or another and bunch of people who are trying to help them. It is a serious place, where the line between doing well and doing badly is exposed like a bad tabloid story.

No appetizers either.

Before the week even began I found myself in the ER, basically doubled over with the worst abdominal pain I have ever had. It must have shown, as I was grabbed by a nurse out of the registration line and whisked off to an exam room. With Chupi basically acting as an interpreter, while I ground off another layer of tooth enamel, wondering if I was going to pop open like one of those people in the movie ‘Alien.’ An injection of painkillers later and I was able to at least reply to questions.

Fast forward to mid-week. Test after test, x-ray, MRI, etc. At this point there are no absolute conclusions, just debilitating pain between shots and going stir-crazy in the rational moments. The tests are showing clotting issues and an inflamed section of intestine. The cause is not apparent at this time.

Fast forward to the end of the week. Teams of very nice people oozing IQ points from the hematology, hepatology and…regular doctor (I am sure there is a term for them) decide on a plan of treatment. After a tidal wave of information, the relief is palpable. New meds to try and knock this back are issued and we are off and running. Well not quite. I am being held for observation for a couple of days to make sure it is all hunky-dory.

With a little luck, I will be out of here nearly a week after stumbling in. I find it amazing how one organ can wreak so much havoc on someone.

And in case you are curious, there will be a conga line eventually.

Almost but Not Quite

Right now, there is a room at the hospital with the door closed. Inside, a bunch of doctors have my medical file and while they are not quite deciding my fate, it is close enough to make me uncomfortable.

It has to give anyone in my situation pause. Will they decide I am not a good candidate? Will they determine that it is a good idea to pass me on to the team in Indiana? Will they come up with some other solution? Will they simply park the file so they can spend some time thinking about it?

I already have an aversion to Mondays. This simply punches up the volume a bit.

On the flip side, after seventeen years together, and I do mean together…we have been apart like three weeks since we met, Carolyn and I are getting married.

It was a sudden decision as these things go, but it goes to show that there is some sort of balance in my little world. I am pretty stoked. She is out of her mind. Now, if I can only figure out how to get the mutt to bring her ring to me at the right time during the ceremony.

Sometimes, the News is Bad

(An Aside: normally you know me as being reasonably wordy with the best spin on everything, but since this news is just a few hours old, I am giving it pretty much right between the eyes.)

Today was the big day, off to the UAB Transplant Center for fresh testing and a real evaluation to get on the transplant list. It should have been 6 AM blood tests, followed by a fresh contrast CT scan, followed by a meeting with a surgeon or two to lay out a plan for the rest of the tests and evaluation.

Well, it turns out there will not be any more tests. Not at UAB, at least.

The short version is that I am not able to have a liver transplant, at least not within the normal definition of the term. This is very technical, but without consulting anyone else or doing any research here is what I understand right now (and there could very well be errors, so bear with me):

One of the surgeons went through the CT scan and found that the Portal Vein, which feeds from the intestines to the liver is, for the lack of a better term, destroyed. The Portal Vein carries 50-70% of the blood to the liver, so it is an essential piece of hardware down there.

In place of the Portal Vein, a series of very small, wispy veins have grown to pick up some of the slack and keep me alive.

The problem being is that in a transplant, without an intact Portal Vein, you have nothing to hook the new liver to. The tiny new veins are far too small to suture to anything. no vein, no transplant.

Here we have our quandary.

UAB has done a procedure involving patchworking a vein (or artery, cannot remember which) from the leg of the patient to a transplanted liver. The problems with this are turn out to cause problems with the legs…and it has a 50% mortality rate.

The surgeon did not really recommend this as an option.

There is another procedure (apparently new or rare or something) done only by a few transplant centers. They do what is called a, “Intestinal Multi-Visceral Transplant,” where they transplant not just the liver, but the intestinal tract as well, which comes with all the associated plumbing like that Portal Vein.

Of course, common sense seems to say, ‘twice the transplant, twice the possibility of complications.’ The surgeon said the best center is in Indiana.

At some point in the next week or so, the UAB Transplant Team will look at my case and more than likely refer it to the center in Indiana to see if they will evaluate me for their procedure.

Meanwhile, we are all pretty shell-shocked over this. I have considered myself to be on a pretty good path until today, any news was reasonably expected, even if it meant I was getting sicker. This one re-taught me an old lesson: Sometimes, the news is bad.

I will, however, continue. I may need a little more faith, hope and gaff tape, and certainly more help from family and friends. For me, I believe the cure will come…it is just a little harder to get to now.

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

Paper

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.