Are we in Jericho? Where's my trumpet?

Damn I'm pissed.
The contact for the media relations department has kibashed (sp?) my request to have a photographer present during my appointments and most likely killed having him in the operating room and subsequently everywhere else.

Like I said yesterday, I don't take "no" lightly. I fired off several emails to people that have done this, doing this or know someone in high places. Hopefully, something will transpire.

Am I wrong in trying to make something more than what it is? As much as I hate to do it, I look at the numbers as something to ground me and motivate me.

Waiting list candidates as of today 11:45am
All	93,637
Kidney	68,495
Pancreas	1,733
Kidney/Pancreas	2,405
Liver	17,074
Intestine	237
Heart	2,819
Lung	2,879
Heart/Lung	146
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - July 2006
Total	17,170
Deceased Donor	13,232
Living Donor	3,938
Based on OPTN data as of 10/20/2006

Donors recovered January - July 2006
Total	8,670
Deceased Donor	4,730
Living Donor	3,940

Based on OPTN data as of 10/20/2006

A battle on many fronts

I got a bit of news that wasn't in my favor tonight. The Asst. Dir of the UPMC News Bureau said they won't allow me to have a photographer access to my activities when I am at the transplant clinic. They cited HIPAA and the privacy required. My arguementis that I am asking the photog to follow me. Giving full consent. I also asked for the hospital policies that prohibit this.

I don't take no lightly.

Easy come, easy go

Some cool news to be updated later in the week. Maybe sooner.

Not sure if you have been affected, but this web site (blogger.com and blogspot.com) have been hit with some outages for the past two weeks. While I started here at blogger, I don't exactly have a reason to stay here indefinately.
It will be a bit more work, but I am mirroring the posts here on blogger over on wordpress. Here is the link http://causaleffect.wordpress.com/ if you can't see blogger, then head over to wordpress.

If blogger gets with the program and stays up for a while, then I will probably stay here at blogger. If there are many more outages in the next 7-10 days, then I will email you all and of course post the move here. If you can actually conect and read it that is.

Monday morning quickie

I know most of you are still sleeping but I got this link from Becky, a living donor I have been conversing with. Her blog is here. She sent me a link of another living donor. It s good site to see what actually happens. GRAPHIC PICTURES OF THE SURGERY are on this site. You have been warned. http://www.sit-and-spin.com/modules/wordpress/?page_id=98

I will post more later today.

The more things change, the more changes there are

I know the many of my posts aren't liver donor related.....sorry 'bout that. But until something liver donor related actually happens, this can be a slow moving blog or I can post cannon fodder.
I choose cannon fodder for now.

Weather caused all of the delays and cancellations. Wind is on order for the eastern seaboard tonight. Hopefully, it won't reach several hundred miles inland when I am in the air.

I started out at the airport at about 3:00pm. My flight was originally set for 7:55 departure. Then it was changed to 9:50. At 6:45pm, they changed the flight to 7:30. Then at 7:00 they changed the gate. At the new gate, they didn't know the Pittsburgh flight was assigned to them. Finally, about 7:45 they said Pittsbugh will depart at 9:46pm. Whew.

It's 8:00pm now, lets see if that sticks this time.

Being Friday, there aren't any changes or updates on the medical front. I have three weeks to be concerned about my liver biopsy and the milkshake straw they will call a needle that wil be thrust into my abdomen. Lets hope it only takes a single time and two or three.

I am really hoping that I get a pass to bring the media along. Maybe they will take better care of me then. You know, I will have a witness. :)

Coming going and staying

Ahhhh, Atlanta...... Home of CNN, Turner, Coca-Cola, Delta and several professional sports teams and as mentioned in a prior post, the Atlanta Motor Speedway (they are suppose to be qualifying for the Sunday race but it may be rained out).

Knowing that Atlanta is one of the worlds busiest airports (plus the throngs of travelers tthat are coming to the race), I allowed myself AMPLE time to get to the airport, check in my car, take the bus to the terminal and deal with the TSA and security.

It took me about an hour and a half to actually get from the work site to the gate. I left around 2:00 and my flight was to leave at 6:55pm. PLENTY of time. Well, the weather must have done a doozy to the nations airlines because I over heard many people saying their flights were canceled and that causes everything to get delayed. Now, I have a 9:50 pm flight time. Assuming I actually get to leave Atlanta.

I guess I could have went to watch qualifying afterall.....

ANd me without my camera for EIGHT hours in the airport. Dang, this is a target rich photographic environment. So many people, so many personalities.

That's gonna leave a mark

Here's my schedule:

Wednesday 11/15/2006
9:00 Social Work
10:00 Transplant Clinic & Hepatology
12:00 Labs
4:00 Behavioral Health

Thursday 11/16/2006
6:45 EKG, CXR, CT
10:00 PFT
1:00 2D-Echo

Friday 11/17/2006
6:00 Liver Biopsy

vier (four)

I couldn't stand it. I had to head to the track that IS Atlanta Motor Speedway. It is very large and majestic. Around the track, on the actual track property and in camp sites next to the track, there are all sorts of activities going on. Mostly the early race hounds were all camped up around 55 gallon barrels burning firewood and telling testosterone fueled stories. Many of the race related trailers were already there. Mostly for the souvenirs and radio rentals as well as food and beverage. The hospitality tents are all up and ready to host. I couldn't see into the track but I don't think the race trailers can take a spot until the track open for competition which will probably be Wednesday midnight or Thursday noon.

Did I tell you I will NOT leave my camera when I travel anymore.......

What's playing on my iPod (well, I don't have an iPod, but I do have a PDA and it's playing) - Giant, Avril Lavigne, Nat King Cole, Pink, Rihanna, White Heart, Phil Keaggy, Eminem, Direct Current (yeah baby!), Aerosmith, Kenny G and others.

It's pretty fun to give total strangers compliments. Try it......

I screwed the pooch and other things

Well....I'm here in Atlanta and wondering what the heck I could do when I am not working. Go to a movie...nah. How about Coca Cola World....maybe.....Hard Rock Cafe ~ "seen it!".....CNN.....liberal ba$terds, NOT GONNA DO IT!......hmmmm, what else can I do.....GO TO THE RACE!!!!!!!!!!!!!!!!!!!!!!

Well, this is the second trip I have taken and not brought my camera along. The first time was a test to see if I could "be away from it" for more than an hour. This trip was to confirm that the dang thing isn't a ball and chain. Kind of like AA for photographers. COLD TURKEY.

I screwed that up. This weekend is a NASCAR race in ATLANTA. What the hell was I thinking? Me.....a NASCAR fan (not that you can tell from my screw up!) and I totally dropped the ball that they are racing here this weekend.

.sigh.

I leave Friday.....unless I have some problems at work and have to stay another night......insert evil laugh here.......

Still, I will (probably_) never leave my camera home again. Repeat "one billion times..."

On another more somber note (I love to kill the joy).
Here are the latest transplant numbers.

Waiting list candidates as of today 7:52pm
All	93,583
Kidney	68,400
Pancreas	1,736
Kidney/Pancreas	2,412
Liver	17,089
Intestine	237
Heart	2,832
Lung	2,888
Heart/Lung	145
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - July 2006
Total	17,170
Deceased Donor	13,232
Living Donor	3,938
Based on OPTN data as of 10/20/2006

Donors recovered January - July 2006
Total	8,670
Deceased Donor	4,730
Living Donor	3,940

Stress and consequences

WOW!
Not that anyone cares, but I gave myself a cold sore in the last three hours.
Fought with my wife last night. Didn't get much sleep. Woke up early (for ME) to travel to Georgia. Got a call from the Starzl Center and made my appointments.....The stress of it all is hitting me right in the LIP!

.damn!!

The time is NOW

The recipient is on the list.
I have been approved by the insurance.
I now have a date for the first round of my tests.

Nov 15, 16 and 17 I will be at the Starzl Center to undergo the psych, biopsy and all the other things to see if I am a good candidate for a liver donation.

They could have scheduled me for next week, but I am on the first day of a three week swing through Atlanta, Ohio and Shreveport.

Wooohoooooo, let the ride begin.

Here we go!!!!!

The last blood test results came back and now we have a MELD Score of 8. The scorings go from 6 (less ill) to 40 (gravely ill). Having a score of 8 means the recipient is fairly healthy. The primary contact is now making phone calls and the ball is rolling.
I am sure I will be heading to a flurry of appointments here pretty soon.

Updates will come as often as ANYTHING changes.

Century mark

I hit 100 visitors between Friday and today. Whoop de dooo!
Sorry, no prize since I don't know who did it.

Time waits for snowman

That was actually a title of a Greg Stump ski movie in 1985 click here for the IMDB reference. He made some good edgy movies even if you aren't a skier. You should also check out Warren Miller's stuff too. Those are the gold standard for ski movies.

I heard that there is another blood test today. (Not for me). But then we MIGHT actually get an idea if the liver tranplant will go ahead. Well, that last part is wishful thinking. I don't expect anything at this point in the game. Which I believe to be early in the first quarter.

.sheesh.


It snowed for a while today. Not a Buffalo NY snow, but heavy flurries none-the-less. Maybe it will stick around. I missed some great shots of the fall leaves turning color. It's that dang WORK thing that keeps getting in the way to really great photographs.

Debt holds U.S. troops back from overseas duty - Military Affairs - MSNBC.com

Debt holds U.S. troops back from overseas duty - Military Affairs - MSNBC.com

Hmm, after I said something nice about MSNBC they go and do this. Well, MSNBC has always had a slant so I am really not surprised. But this article didn't mention anywhere that perhaps the military should GET A RAISE???? Arghhh..

End of week med update

Not much to add. I did get an update from a few of the biopsies that were done....recently...?
All the biopsy results that have been returned are okay, except for one shows a "stressed spleen". And there are still a few biopsy results yet to be returned. Next week there should be more results from this weeks tests, I think. All of this info is second hand, so I am trying to be accurate. Forgive me if I make corrections.

Finally a med update

One of the more enjoyable activities when blogging is coming up with the title names.

Actual news.
Since I am not identifying the recipient by name, I can be somewhat assured I won't suffer the "wrath of spouse" if I mention some of the afflictions. Then again, no one can be assured of safety and security of a spouse scorned, right.

SOME test results came back yesterday during the appointment.
The recipient suffers/is afflicted (?) from/with "Varices" med definition here The basic definition (?) is enlarged veins. This is in the espophagus (sp?) and intestines. Very bad if one bursts or begins to bleed.

Still waiting for results from some biopsies that were performed. Not sure when they were done, but we are still waiting for the results. I think we are still waiting for the results of the tests that were performed the week of Sep 25 (or Oct 2?), I don't remember when they were done. Heck could have been last week (Oct 9).

Here is another quiant office visit story. The appointment was for 9:00 am. Morning traffic "dahntahn" is like any city, horrible. Well, they made it quite nicely and after the arrival, it looked like there were "45" other people in the office too. At 10:00 am, my spouse was getting close to "that line" (the one you don't want to cross over or have crossed) and told the nurse/staff that they will be seen at 10:00. It wasn't her (theirs/our) fault that the Dr/nurse/staff made appointments with dozens of other people at the same time.

.sigh.

I can't wait until it's my turn to go through this fiasco. But....but....but....(he he) I may be able to leverage the media along this portion of my own journey. If the paper (and this lowly blog) are being used for good, maybe the customer service (?) will be a little better for me. Time will tell.

I will give the photo ed an email to let him know what the current status is. Shich is a holding pattern. STILL.

Dreams dashed

Well, not really, just postponed.

That idea I had at 11:42 am....well it was dashed already.

I know someone that knew someone that knows someone (remember I try not to name names)....and I was thinking about using that...connection (?) to get this organ transplant thing a little push. Anyway, the connection is disconnected.

.sigh.

I will have to get a little more creative.

Remember, the closest exit may be behind you

I travel a lot. Averaging twice a month, but unfortunately only 40k miles this year on US Airlines. Only 27k are applicable for a frequent flyer classification. Sigh. I can get a subscription to some magazine though.

MSNBC despite their slant is a good news site. This article made me chuckle and those of you that fly will relate. http://www.msnbc.msn.com/id/15017582/

My favorite line of the article (these the readers pet peeves):
Security, obviously. “Have you looked at the TSA website lately? They do not list whether you can bring iPods or MP3 players on a plane (something that about 50 percent of travelers have), but they take pains to list that you cannot take cattle prods, ninja throwing stars or nunchuks. DUH!”

No Cattle prods, well there goes my trip to Nebraska!

Numbers, numbers, everywhere

Here are some numbers from the OPTN (Organ Procurement and Transplant Network)

Waiting List Candidates as of 11:35 am 10/18/06

All	93,443
Kidney	68,252
Pancreas	1,734
Kidney/Pancreas	2,419
Liver	17,072
Intestine	237
Heart	2,841
Lung	2,893
Heart/Lung	146

Transplants performed Jan-Jul 2006

Total	17,169
Deceased Donor	13,231
Living Donor	3,938

Donors recovered Jan-Jul 2006

Total	8,671
Deceased Donor	4,730
Living Donor	3,941

*Based on OPTN data as of 10/13/2006

Given that I have been called a "crusader" ((Thanks LP)) I am taking it to heart. I have an idea I am working on and will see if anything comes to fruition. Yes, that was an ambiguous tease, but I thought I would throw it out there anyway)).