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More Waiting

13 May 5:10 EST: Well, it looks like we are on hold until late tonight/early tomorrow now. The timeline is being stretched out due to some issues beyond our control. Good news is that we have not been waved off, so we are still in the race. Bad news? I cannot sleep on these hospital beds. 

A small thing, really. Tomorrow I will almost certainly be a bit messy, but I will still be handing out doses of snark here at Transplant. Keep them laughing and they will let you have food and water!

The Call V.3

The Call version three just came in. Running for IU Transplant. Let us hope this one is the one with some follow through. 

Day Twenty-Two

chair

Twenty-two days on the transplant list, two false alarms where we were ripping at warp speed to the Transplant Center to get ready for surgery…and a partridge in a pear tree.

As I have previously posted, the waiting is tough. The two calls to come prep for the procedure, with us ripping up to IU, drawing labs, X-Rays, and a load of whatnot, followed by hours and hours of grind-the-teeth waiting with the crushingly disappointing conclusion of, “It is not going to work out, you can go home,” which is about a hundred times harder that just about everything else. I do present a tough case for the Docs and if all the elements are not perfectly in order, then the whole shooting match changes over standard single-organ transplant patients as to not waste the organs. Fair enough…save lives where you can.

So, we are back to waiting at Secret Squirrel HQ #3. And surgery or not, when they call to prep, we are ready in minutes to blow out of here.

Meanwhile, life, mine and those around me, is a bit messy. Everyone does very well with the day to day considering the conditions my personal issues. Jobs get done, dogs (and cats) get walked, laundry gets folded and I try to help or keep out of the way as needed.

For myself, it is about routine. I attempt to do the same basic tasks at the same time, in the same manner, every day. It is helpful to be able to set the old brain on cruise control and knock out the usual items. Shower, shave, take the AM handful o’ pills, give myself the dreaded morning abdominal injection (hopefully without biting a hole in my lip), eat something for breakfast and ponder writing another blog post. Etc., etc., the day continues and if I am lucky there is no increase in pain or the indignities of a failing body or far too many meds fighting each other and wreaking havoc on my guts.

It does go on. Occasionally spiked up from going and having new blood drawn for testing, weekends when The Missus and “Mother” Blanche are up. Oh, and the mutt, who gets along charmingly with Neurotic Cat #1 and #2.

And staring at the phone, I do that like I can will it to ring with news of a new set of organs and make it time to haul butt to IU Transplant.

One of these days The Call with come, and importantly, the follow-through of scooping out my insides and replacing with a donor set. Only then can we begin the long and painful (so I am told) process of recovery and healing and building yet another life.

Forward, ever onward. It is simply the only option I will consider.

Crushed

A crushing blow, like a lead pipe slamming into the heart…

One of the organs I needed was damaged. Without a basically perfect set, matched to my age, body size, blood and antibody type, it is a no go. 

We are returning to Secret Squirrel HQ #3. I am unsure how to deal with this, other than to say that tomorrow I will wake up and hope for another shot at it. 

And with that …

Call number Two came in. New donor found. On the way to IU Transplant. 

Read Me Update

This is Rumor Control, interrupting the program previously abandoned.

For those of you hearing lots of speculation, please note the following:

Yes, I have been diagnosed with a critical medical issue. For some reason my liver and several other internal bits and pieces have decided to hate me and are doing the very best they can to throw wrenches into my heath.

I am currently in line for what is called a “Multivisceral Transplant,” which offers the best rate of survival for this. It involved removing and replacing my intestines, stomach, pancreas and liver, along with the associated plumbing that goes with it.

No, I am not dying at this minute. Well, actually, I am. We all are. I’m just doing it at a quicker and less predictable pace. This big issue that was recently discovered and has made this somewhat urgent is a rather large and serious clot that has apparently wrecked the Hepatic Portal Vein (which moves blood and nutrients from the intestines to the liver).

Even more serious is that the clot is beginning to move in on the Mesenteric Vein. If it blocks it, I will be facing an emergency, life-threatening problem that will require attention, or else. We just will pass over what “or else” is for now.

Like a good little boy, I do what the Docs tell me to do. They told me not to do anything stupid, which is good advice for everyone. There are tests o’ plenty, which is a real drag, especially when you start running out of good veins. Lord knows how much extra radiation I have had in the last eighteen months.

And pills, lots of pills, handfuls twice a day as well as two shots that go into the abdomen and are…well, pretty painful, but absolutely necessary as they are anti-coagulants and are hopefully keeping the clot from getting any larger, which in turn, keeps me alive. They are the worst part of the day for me right now. There is a limited area for the injections to be placed and I have filled those areas with previous punctures. Now, it is needle jab on top of needle jab. Not fun.

Despite all this, I try to not screw up today thinking about tomorrow and what may or may not happen. As should we all.

This is rumor control, now returning you to the previous static.

Shaking Hands

no-vacancy

With the developments of Tuesday, this song comes to mind for some reason, although I have no idea why:

I was sitting in the Hollywood Hawaiian hotel
I was staring in my empty coffee cup
I was thinking that the gypsy wasn’t lyin’
All the salty Margaritas in Los Angeles
I’m gonna drink ’em up

And if California slides into the ocean
Like the mystics and statistics say it will
I predict this motel will be standing until I pay my bill

Don’t the sun look angry through the trees
Don’t the trees look like crucified thieves
Don’t you feel like desperadoes under the eaves
Heaven help the one who leaves

Still waking up in the mornings with shaking hands
And I’m trying to find a girl who understands me
But except in dreams you’re never really free

Don’t the sun look angry at me
I was sitting in the Hollywood Hawaiian hotel
I was listening to the air conditioner hum
It went mmm, mmm, mmm

Look away down Gower Avenue, look away

-Warren Zevon

Except in dreams, you’re never really free…yep. Some days it feels that way. For me, right now, it feels very much so. Doctors, pills, shots, tests, pain, balance, indignities, insomnia, restrictions, limits of all manner. I am becoming trapped in my own consciousness with no way out save for one multivisceral transplant of intestine, liver, pancreas and stomach and a several month stay in the hospital to recover. 

Listening to the air conditioner hum. 

 

No go

The organs were not viable. Obviously, we are all a bit disappointed as we head back to Secret Squirrel HQ #3, but everything happens in its own time. 

More tomorrow. 

Now

Just got The Call and am on the way to IU Transplant. This is it, folks. This is the time for prayers, good thoughts and anything else you care to send my way. 

Thanks all. See you on the other side. 

Estimates

highway2

It is day fifteen and I would like to ask the transplant team the question that crosses my mind the most these days (simply, “When?”), but an “estimate” of when I might undergo my big procedure would not mean squat. Too many variables and with the seemingly inscrutable bureaucracy that is UNOS/OPTN (United Network for Organ Sharing/Organ Procurement and Transplantation Network) handling the management of all transplant donors and recipients 24/7, nationwide…well, there is no telling when we will get The Call.

Meanwhile, I do both mental and physical pacing back and forth. I cannot drive, which is a royal pain in the tush and I am not allowed to go any further away from the transplant center than I am now, all of which adds up to a minor twitch in my brain, emotionally.

Do you remember when you first started driving? Getting behind the wheel of whatever junker you managed to come up with and just heading out on the highway. Driving into the sunset, radio blaring out rock and roll from the one functional speaker, a full tank of gas and no plans to be anywhere specific.

That was freedom.

When you lose that, even temporarily, it is a blow to not just to you, but your entire concept of being free.

So, during my version of The Last Great Wait, I look forward not only to having a bunch of extremely talented medical folks save my bacon, but I look forward to regaining my freedom when I have recovered. I am certain I will, from time to time, toss The Missus into my truck, pick a direction and start driving. Not to the ends of the earth, mind you, but far enough to find new things, which can be a trick when you have traveled as much as we have.

And last time I checked, this was still America, the home of the free. We should all take advantage of our freedoms while we can.

More later…