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And Thus, We Begin.

Before we get into the latest (and somewhat repetitive) news on the Great Organ Replacement Scene, I just wanted to make a short, very personal statement.

I will never cease to be amazed at the love and generosity of family and friends, both near and far during this medical debacle of mine. The Missus and I are truly thankful, humbled and will never forget how everyone helped us through this incredibly hard time.

Now the latest.

Unfortunately my condition has taken a rather sudden and disturbing decline. The sharp, stabbing pain that shoots through my abdomen has reached not-quite-hospitalize-me levels. Nausea is pretty fierce as is vertigo. Short-term memory is a little lean and I find myself doing a bit of word-searching from time to time. Toss in massive fatigue, annoying weakness, shaking like a leaf and raging insomnia and the little vision of my current plight is complete.

I am certain there are far worse medical conditions to have, however I really do not recommend this one.

The big news is that I made it through the transplant committee process and as soon as some insurance paperwork comes through, I should be placed on the UNOS transplant list. A big step and a big relief since there really were no other options for me.

Now we are getting ready to relocate me within the mandated 4-hour distance to the transplant facility, where I will await the phone call that there is a potential set of organs that match my criteria. The Missus will come up on weekends, as she has not one, but two jobs to maintain, which will be difficult on both of us. In seventeen years we have spent very little time apart, so on top of a chronic disease, we will be apart more often than not for the foreseeable future.

There is no other way to put this, but it is going to suck. A lot.

It goes with the current territory, I suppose. Some things in life are not supposed to be easy and this is certainly one of them. The physical, emotional and philosophical strain is really something else. I have been through a lot of situations in my life. Some were joyous, some were utterly crushing. There were several times when I wondered if I was going to make it through it unscathed and a few times I was not sure if there was a way out at all.

And now this.

So many, “maybes.” So many, “what if’s.” So many possibilities. So much waiting. I wish I had the patience and the grace to handle it better, but I do the best I can with what I have and who I am, and like I said at the top of this little missive…

A lot of help from a lot of people.

 

Superstitious

Sign

Yesterday, I had the most invasive procedure I have had in this little adventure. It was delightful. A little local anesthetic and then a tube jammed into my leg, worked up to my heart and then used to poke, prod and run a bunch of radioactive fluid through that whole Los Angeles highway style mish-mosh that make up the network of arteries, veins and muscles in there.

I would love you tell you that was entertaining; however the fun-factor was pretty low on that one. Of course, in a hospital, fun is generally a bit hard to come by. Rightly, they are more interested in trying to heal you than getting a conga line going through the cardiac lab.

We will not even get into the fact that it was Friday the 13th, and I was in bay #4. Let us just say I am a wee bit superstitious and I was not particularly pleased in my own irrational, ridiculous way. Might as well bring in a bowl of rice with some chopsticks jammed vertically in it.

And this was the highlight, and thankfully, the end of a full week of back to back tests, that left not only me feeling wet-rag-drained to the bones, but the Mrs. as well. She was a serious trooper, keeping up with all the times, appointments, doctors, paperwork, medications and endless questions that came up over the 120 hours we were involved in this.

Do not get me wrong, the folks here at this transplant center are tops. This transplant evaluation was thrown together very quickly for as complicated of a procedure as it is, and when the cracks started to show, the went out of their way to help us out.

But I digress. I should back up to the beginning of this little adventure.

I went through much of the same process, not quite as thorough but close, over at UAB’s transplant clinic. Unfortunately, they found that in the past I had developed a clot in one of the veins feeding the liver. Over time, the clot had grown to nearly block another vein and work in some smaller clots nearby. Needless to say, this was not good.

In a nutshell, a standard liver transplant was not possible. I would need a very complex procedure where the liver, small intestine, pancreas and part of the stomach are all pulled out and replaced. Along with all those organs come the veins and arteries to replace all of mine.

Complicated? It is like changing the gear shift knob vs. getting a whole new transmission.

So, here we are. More questions, more needles, more radiation. A steady parade of coordinators, doctors, nurses, PA’s, technicians, counselors, receptionists, social workers, dieticians, psychologists and transportation folks. It slowly wears you down, leaving you dizzy (literally and figuratively), but when the only option is this, you crank about it in your head for thirty seconds and then knuckle up and do it. Period.

Meanwhile, my body grows weaker. My strength and balance fail me more often. My hands shake badly from time to time. My thoughts get hazier and it is harder to concentrate. If it were not for the help of a great number of family and friends, I am quite certain that I would have fallen apart months ago, and for all their endless support, I am well and truly blessed.

And so we go on, because the only way to fail is to quit.

The Day

Today, Carolyn and I were married. We had the ceremony at the shop with all the Jones clan, friends from our humble little city, Nashville and Las Vegas either in the ceremony or helping to pull the whole thing off.

And it was lovely.

Sam turned the shop into an amazing little chapel, Pink made some amazing cakes, JT performed three songs amazingly and lots of other pitched in to make it a day to remember. Fudge Pie Phil, who is a pastor up at Belmont in Nashville, wrote a fine ceremony that was serious, funny and uplifting all at once. Gordon was Carolyn’s Man of Honor…the hitch came somewhere a few weeks ago, when it hit me that I needed a best man.

Logically, any number of friends or family from my past or present would have filled the bill, yet something did not seem right. I ended up with an empty space next to me and read the following before the ceremony:

“Thank you all for coming to our little extravaganza. You have probably noticed this space where a best man would stand. Anyone here today and many of my friends from my past could stand in this place and it would make perfect sense, however, it is empty and it is Carolyn’s fault.

You see, she was on the on the phone asking Gordon to be her Man of Honor. Gordon must have asked her why, and she reeled off a list of Man of Honor qualifications…someone who supports you no matter what. Someone you can call at all hours simply to talk something through. Someone who lifts you up, unconditionally, without asking a thing in return. Someone who is simply there for you.

My quandary is this: That describes Carolyn to a T. She has always been my beacon, sharing my hopes and dreams. Even when the situation appears to be grim, she pulls me though it. She is my Best Woman.

Since she already has a spot up here, there is this space. And since I cannot fit all of you into this one space, I leave it open to represent all you magnificent people who have taken Carolyn and I into your hearts.”

And that was that. It was an amazing afternoon and I was glad to see that everyone was happy with the whole thing, especially Carolyn, because weddings really are about the bride.

Now we move forward as man and wife, with whatever life throws at us taken in stride, together. It is the same as the seventeen years prior, but with a subtle difference. No more “Girlfriend” or “Significant Other” needed.

Amen.

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.