15 minutes….

Andy was right, everyone gets their 15 minutes of fame. I got my name in the paper today, it's just too bad I had to swap my Liver to get it there.

I had to get out of the house today. I woke up early, hopped in the shower, got dressed, and headed down stairs to get ready to go the lab – I mean it is Wednesday after all….errr…. oop. I completely lost track of what day it was, and luckily my wife was ready to clear that up for me. So back up stairs I went to finish messing with my new computer.

Until today it had been almost 4 days since I had been outside, and after a while I just lose it. All of it in fact. Everyone, except the kids of course, has been sick for the past few days, so I was at the mercy of my chauffeur, and no one was up for much outing – so inside boy I became. We stopped by Home Depot, Staples and went to lunch. Lunch was about the same, the Applebee's in town is about as regular as a bipolar schizophrenic. I'm not even sure why I go there any more. The only good thing is the fact that you can human sized portions. Most places serve depth-charge size drinks, and enough food to keep a platoon of bears fat and happy for the winter. It was good to get out for a while any way.

It's still a couple of weeks before I have to go back to Pittsburgh for clinic, but I still have my normal hump-day date with the Lab, and my new found Eclipse ball to keep me warm in the interim. 

Why does everything sound really bad?

Cytomegalovirus (CMV).

That’s what I was given by the donated liver, which normally is like who cares; but as I am now immuno-challenged, I have awaken the dormant virus from my new liver. I guess there’s always a catch right? Nothing is free these days. Well, I guess that doesn’t really work either, this whole things isn’t free – and I guess I owe a big thank you to my employer.

Any way, I guess that CMV can be really bad if left unchecked, so it’s a good thing that the numbers are really low, and that my coordinator says that it isn’t a big deal, or the end of the world. Things have been going so well, that I guess I really should have expected a couple speed-bumps.

The thing that I am being treated with is an Eclipse Infuser, and it’s pretty slick. It’s a self contained rubber ball of juice, that is designed and measured to flow at a specific rate, and this one (about the size of racquetball) works on the Lens Crafters paradigm – In about an hour. So now with this latest addition, I have this fun little routine in the morning and night. I take my morning meds at 8am, hook up my racquetball med deliver system at 9am until 10am, then I take more meds when this thing is done. w00t! w00t!

I am told I can expect to have the PICC Line in for at least 2 weeks, and that means I get to see Kelly (the home nurse) a couple times a week for a while. At least this thing is easy to use, and I don’t have to be stuck in Pittsburgh while I get this sorted out. I mean the folks on the 12th floor are great and all, but it’s not my preferred residence.

Back to Pittsburgh for the day

I got a call from my coordinator today and she was wanting to know if I wanted to come to Pittsburgh. Well, being that it most definately a thinly veiled rhetorical question, I was like-

No, not really.

 But alas, my choice in this matter, was either yes or yes.

As it turns out, the donor at some point was exposed to a virus, and I just popped positive for it yesterday in my regular Wednesday lab. If I could remember what the virus is called, I would post it – but it was a really big word – so I have forgotten what it is.

So the deal is, I get a PICC Line inserted in my arm, and I get to have IV fluids 2 times a day. After I get back home tomorrow, I will be lucky enough to get a visit by a nurse and attach myself to some machine which will juice me so I get better. I'm guessing I get to be a pin cushion for a week, then as soon as I test negative for the virus, then I get to switch to pills and get this thing yanked from my arm.

I will post an update in the next couple of days when I get more info, and have them tell me a bit more about this thing I gots. 

In the absence of anything interesting….

I have no news to report
as nothing notable of any sort
has occurred in many a day
and, ya know?
I sorta like it this way.

Any way, Litsa's Dad has fled to the south, and she has joined them in Puerto Rico. They suck, all of them. It was 13 freakin' degrees here yesterday, and almost 80 there (it's negative 6 right now!). I can't remember which city they are all staying in, but I did gather it was near Arecibo , since Litsa saw fit to point it out and how much of a bummer it was for me. Nice.

Well, my brother has been hangin' out being my source of entertainment for a week now, and he has to leave on Wednesday to head back home. So I think we will be acquiring my new recliner today – hopefully anyway. 

There's really nothing new going on with me as far as my transplant goes. I'm still feeling good all things considered and it's getting easier for me to get out and do things. I still get tired around and after dinner time, so I don't generally do anything after dinner until around 7:30 8:00 again. It still seems weird that I don't have to go back to clinic for almost a month. I'm pretty happy about it, but still surprised. 

There is something in some foods that really makes it a pain to eat sometimes, but I haven't been able to narrow it down. It's only at dinner, and it only happens 1 or 2 times a week. I just wind up getting sore around my incision and then I go lie down for 30 minutes or so, then I'm right as rain. Weird. 

I also want to apologize to anyone who has tried to get in touch with me via cell phone, we don't get service at our house unless I am in my bedroom standing in front of the south facing window, so there are a few messages that took me a while to retrieve.  Since I am still not supposed to drive, I am generally at home – and it makes it a bit tough to get a good signal when I only get 1 bar any way.

I almost can’t believe it….

I'm goin' home, I'm goin' home
I'm goin' home, I'm goin' home
I'm goin' home, bome, bome, bome-bome-bome,
Home, bome, bome, bome, back home
Yes, I am

 Today is a landmark – yes, that's pretty much the word for it. I can't believe it actually, and when the doctor told me I could go home if I wanted to, I didn't know what to say/do. In fact we just sat there and blinked at him.

dooo-dooo-do-dooooooooo…. dis is da dial-tonnnee………

I have to come back for the clinic again on Monday, but hey – I GET TO GO HOME!

So, I can safely say I actually feel like I am getting better, which quite honestly after the last week – this is exactly what I needed to hear. I'm still a bit baffled at the prospect of going home, I mean two days ago the saw-bones told me to expect to be here for 10 to 15 more days. I'm glad he was wrong, and in fact if I saw him today, he'd probably get the raspberry – tthhhhppppptttttt.

Free! Free at last….

Into the great wide open,
Under them skies of blue

I was finally able to run away from UPMC today around 3:30pm, and that's what I did. Launching myself from my cozy little room (with what had to be the whiniest neighbor on the face of the planet) out into, ohhh… 3 degree weather. ACK! It's a wee bit chilly here, and I was cold!

The Arteriogram and Angioplasty went well and widened the Main Artery of the liver to 75% – 80%. Which is great news, and the results were confirmed this morning by another Ultrasound. So I'm pretty happy with the results, considering one of the side effects of the Angioplasty could have been the artery rupturing sending me back for another liver. (Again with the ACK!)

Seeing the boys today was great, I can't believe how much they've changed and how much better Dylan is talking – they almost seem like two different boys. They quickly wore me out though, and I am glad to have a break. Then we will all sit down for dinner, and start over with the ensuing chaos. It's a good chaos, and I can't believe how much I missed them – they're crazy – but I love it. I had to plop a pillow on my stomach to keep Captain Elbows away from me so he didn't kill me – but then again, he seemed to understand that he needed to take it easy with me. Donovan was a lot easier to convince, but he's a bit older.

It's good to be out, and back to some varied sense of normality. Not really, but closer than sitting in a hospital bed. And as lolng as I keep my distance from Bacon for a while, I think I will be in the clear…

Back in the saddle again….

Ridin' high
Ridin' high
Ridin' high already

So, since last Friday I have strangely quiet – I've been in the Hospital.

Back in the saddle again….

I was admitted with some slightly elevated FK levels. That's what they use to measure the level of the antirejection medicine I am taking (Prograf) – so they admitted me for 24 hour observation. So a week later and a few other problems – there really is no end in sight and I am still here.

It initially started with a bit of mild rejection, okay – they say it's very common and very controllable. So with a blast of Steroids, I get set straight and an ultra sound and liver biopsy on the plate, they find I have a small clot in the Portal vein of my new friend, and a small narrowing of the Artery feeding the liver. A bit more concern here – although they assure it's common and definately not the end of the world.

Needless to say, I am very concerned about it, and they started me on Heperin and Cumodin to thin my blood, to clear the clot. Now, I have been here for nigh on a week, and I feel good. Better than I have since the surgery – my incision is healing fine, I got the stitches out, and I am getting better. The rejection is responding to the new drugs they have and are giving me, but I'm not through it 100% yet – the results so far are favorable.

Now, feeling a bit like a mushroom (kept in the dark and fed sh!t), I will be going through a new procedure tomorrow so they can see the structure in the main artery. The only problem is.. I am spent. My tollerance for pain has evaporated and this whole ordeal has taken a huge toll on my ability to rationalize and deal with many things – it doesn't take much for me to get apprehensive just now. Which is very out of character for me, so that sort of compounds it.

This whole thing is so much harder than what I thought.

The hardest part is keeping everything in perspective. Perspective. I have none. It's hard and I have no frame of reference to help me deal – all I can do is listen to the docs who tell me I am doing well – and try not to get worked up. Yeah right.

Well, I get to see the boys on Saturday. That will be good. I haven't seen my little crazies for a month! A MONTH! It's hard to believe. And I won't get to go home until (most likely) the weekend of the 16th of Feb.

Again thank you to everyone for everything – without all of the love and support there is no way I could do this. And hey if you wanna visit, just yalp – I'm game!