Tuesday, October 31, 2006

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

Monday, October 30, 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.

Friday, October 27, 2006

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.

Thursday, October 26, 2006

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

Wednesday, October 25, 2006

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.


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

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!


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.

Tuesday, October 24, 2006

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.

Monday, October 23, 2006

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.


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.

Friday, October 20, 2006

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.

Thursday, October 19, 2006

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.


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.

Wednesday, October 18, 2006

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.


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)).

Other blogs pt deux

Rather than editing, I thought I would post another....cuz I can.
Here is a blog of someone who has received a liver, from his sister.

So the four liver related blogs I have so far are:
mine, duh
Edd (waiting) http://live-for-life.blogspot.com/
Becky (giver) http://chopped-liver-blog.blogspot.com/
Joe (received) http://myfaithinhumanity.blogspot.com/

Between the four blogs, you should be able to get quite an idea about what happens. All we need now is a nurse, transplant staff or doctor to fill in the blanks. Hmmmm...... I have an idea.....

Two sides to a coin

His story-

Since I am blogging myself, I knew there would be others that are blogging about liver transplants. Either getting or giving. I found two that I liked so far. One, I have emailed the blogger, Edd, and we are now following each others stories, but from opposite sides. Edd’s blog is here http://live-for-life.blogspot.com/. You can of course check it out and possibly get an idea of what could be happening to my own recipient.

The other blog I of a live donor and she can be seen here http://chopped-liver-blog.blogspot.com/ she has a really good sense of humor and writing style.

Below are some excerpts…okay, it’s pretty much word for word, of what I received from Edd about his ordeal and where his donors have been stopped in the process of donating.

My transplant center (Cedars-Sinai in Los Angeles) goes through the following steps, and can “pull the plug” at any step along the way:

  1. Two-page form to get basic medical information to the team
  2. Basic blood tests for matching and to rule out problems based on that
  3. Schedule a trip to LA: X-Rays, CAT Scan, MRI, another blood test
  4. Cardio Stress test and heart workup
  5. Liver Biopsy
  6. Transplant team reviews all the data together
  7. Schedule the operations
  8. Do the operations

So far, I’ve had two people get as far as the biopsy, to be disqualified because of “internal structural abnormalities;” in one case, the bile ducts from the liver to the intestines were twisted, and in the other, the donor candidate didn’t have adequate blood veins going from the portal vein to the right half of the liver. In both cases, the surgery wouldn’t affect the donor’s recovery, but would force the surgeons to be more creative in grafting the liver section to my body. And they don’t want to be creative if they don’t have to be.

Two of the other candidates got as far as the stress test when the doctors decided there were other potential problems in putting them through surgery. In one case, the donor was at a slight risk to develop pancreatitis post-surgery, and in the other, they found a small mass above one of the organs (the spleen, I think) that they thought might be cancerous. Turned out it was a benign mass, but the team opted to play it safe.

The other two were dropped earlier on, due to “socialogical” issues. Both are primary caregivers (housewife and mother) to two young children (and one being a smoker didn’t help matters), and because there is a remote chance of complications up to and including death, the doctors elect to be as safe as possible.

blogging to most of those that blog seem to be a bit of therapy. It is for me. But I also like to communicate. Mass communicate that is. Tell it once and let one or two of you hear it. LOL

Monday, October 16, 2006

Over there, over there, the links are over there ----->

As I run across things interesting, I will put them in the body of a blog post or things I like to read....will be over to the right.

The two newest links are to "Blog-ah" a mil blog of a soldier in a Stryker Brigade from Fort Lewis. My link to this blog is.....one of the soldiers in a Stryker Brig. is the boyfriend of the daughter of my sister in law. Whew, say that three time fast. He is not the blogger, but he might show up in the blog sometime. Straight from the horses mouth right. BTW~ His name is Mauro (pronounced Mario). Here is a specific article with him in the bottom picture.

What does this have to do with donating a liver? Nothing. But it is my blog. :)

Also being a photographer, there is a link to a combat photographers blog. Or you can go here.

No good deed...

...goes unpunished. Isn't that the saying? It has been on my mind for several weeks now.

I appreciate everyone taking the time to read the blog. Most of you know this is something I like to do. In the past, I have had several versions of web sites. This is the most recent iteration. And it’s a little easier to create. I might even add pictures at some point. But again, this is more to follow my path to a liver donation.

Why be punished? Is it a perception? If my liver donation is a good deed, then what would my punishment be? What about all those Boy Scouts? Perhaps we should get an anthropologist and study this more? Maybe it has been studied we just don't know the results. I sound like a year old at the museum. Why, why, why....

Christians are always wrestling with the concept of good and evil. God and the Satan. The holy Word doesn't say believers in Christ (as their Savior) will promise a perfect life. Actually, it is pretty well known that if you do follow Jesus and the teachings of the Bible, you will probably have a potentially very difficult life. Once you become powerful in the Lord, you will have many trials and tribulations to overcome. Of course you will not be alone. You are to lean on God, Jesus and the strength of the Holy Spirit to get you through these difficult times. It's your faith in God that will allow you to understand that you can make it.

But what about the punishment. All it takes is a compromise. God wants all of you. The devil only wants a part of you. The compromise. If you can compromise your relationship with your God. Then it puts doubt on your eternal afterlife.

My wife was coming home along a road that is heavily traveled, it’s very dark and cars drive fast with very little room for error. She drives by a boy walking this dangerous three mile county road.....
After an internal battle with right, wrong and concern (as a human and a parent) she turns around.
Driving back, she slows to a stop and asks if everything is okay. He sheepishly answers but tears stream down his eyes and his eyes show fear.
Being in such a bad location, she tells the boy to get in the car and she will take him to a safe spot. He obeys.
Driving to the baseball field parking lot, she begins a conversation with a "you should never get in a strangers car". He is all balled up with emotion, fear, possibly anger and isolation.

I look out the door and see two people. One is familiar, but the other is not. Who would be coming with her this late in the evening? His face is surprisingly young. He looks scared. Dirty clothes. They come inside. We introduce ourselves. It is literally like a rabbit in a box of dogs. He darts back and forth. Never making eye contact. Very difficult to understand.

We sit down, talk a little football. Try to make things more comfortable. His hands are filthy. His clothes are nice looking but they look like he rolled down a dirt mound. Tears stain his face with clean stripes as his eyes are red.

The kids learn his name and a little about him. We don't welcome him with open arms ala “me casa su casa”, but we are concerned with is well being. Offers of food and drink are politely declined.

My wife gets enough information from him to find out he came from his mom's boyfriend’s mother’s house. Which was, from his perspective, not a good place and he doesn't want to go back.

After several calls to phone numbers that end in a hang up there was finally a connection to the girlfriend of the brother of our young guest. Through the conversation, there was little or no concern by them that he had run away from a house he was supposed to have been safe and secure. It caused some grief to us as well. That that there really are families (sic) that have so little concern for each other. It is truly a foreign concept to us. We hear stories and have some (SOME) knowledge that there are family spats but this lack of care is leaving us with an awful taste.

I offer choices. Back to where he ran from. We could take him home (his choice). Then an offer to call to a close grandparent resulted in even more tears. I also breached the potential of bringing in a police officer almost put him on the lam again.

Quickly I retreated to something more calming like the Broncos v Raiders game on the TV.

After about an hour of little to no contact with his family. I decided that to protect ourselves, we really had to bring in better resources. I went down to the police department and talked with an officer. He said to call 911 to create a case reference and they will be dispatched to our house. It was a very troubling time for me. This boy was obviously scared. In a strangers house and very soon, two police officers are coming to take him away. We were VERY concerned with how this was going to be taken.

The officers came in through the kitchen and walked through the short narrow hallway. He saw them as soon as they entered the kitchen. Fear was apparent. I am sure he was thinking of running again. But what door. Where would he go. Would they chase him. Am I going to jail?

Very calmly they introduced themselves. Officer Mike and Officer Lief (I think). Officer Mike has been around for a while. Very nice guy. Officer Lief is the proverbial new guy. Less than a month I believe.

After getting some info, a cell phone rings. It’s the mother returning a call to my wife’s phone. Other than the short version of the story about how we found her son, I am not sure what words were passed between the two mothers. But eventually the phone went to Officer Mike and he quickly wanted to continue the conversation outside for the young ears may not like what he had to say.

Several minutes later, returning to the living room, he passed the phone to our young guest. He talked and mumbled then cried and passed the phone back. Apparently he will be going back to whence he come. My wife and I were very concerned and quickly voiced that concern to the officer.

As he was walking out with the two officers, I offered him a hug. Sheepishly, he accepted. They went off into the dark night. Two came in, three went out.

Today, only a night has passed. But we wonder about his well being. Did he get greeted with acceptance or was there fear and hatred when he returned to his temporary quarters? We may never know.

…..never goes unpunished. Perhaps it’s not knowing if you did the right thing.

Friday, October 13, 2006

Medical update

Still no word on the results of the recipients tests on Monday. They should have been back Tues/Wed, but they won't return any phone calls to the Dr. office. Nice customer service.
I suppose we should hope for "no news is good news" but in thise case, info NEEDS to be communicated.

There are two more tests next Thursday but I think those are standard procedure and not go/no go tests.

The editor of the paper contacted me to see what the news was, so it's good we are still on the radar there. But it would be nice to have an article going to perehaps keep things moving. Then again, the world doesn't revolve around us. There are others with perhaps more dire needs. We must be patient right. Arghghghghg it's tough and stresfull.

Well, off to the plance to head to Philly then Pitt. See you later. Bday #11 for my "dream come true". Of course it's Red Robin tonight. Wouldn't have it any other way!!!

The wife also congratulated herself on her promotion with a new car last night. I guess I have to keep working now instead of stay home to take care of the kids. Now we can pay a babysitter to take the kids to dance, soccer practice, wrestling etc when I travel and she rides to work in a new car. Hmmm,doesn't sound right to me. But hey, I will get down home time when they cut the liver out....... :)

Letter of the law

Well, I am in Columbia SC. I spent three days here on a job site. The airport is beautiful and staffed with zealous TAS agents. After traveling through Denver, Pasco, Portland, Pittsburgh, Philly, DC Reagan, this one made me toss some of my over the counter meds. The losses include my contact lens saline (it was a 4 ounces bottle but partly used) my Pepto Bismol (factory sealed and 6 ounces) but they let me keep my 1/3 full Pepto because it wasn't over 3 ounces. It was the same size container but it wasn't full. FREAKS. So why did I have to toss my Unused Pepto and partly used saline but I was able to keep my partly used Pepto? These are the in-consistencies that really suck the life out of traveling.

Tuesday, October 10, 2006

Different kind of news

My wife got promoted yesterday. A few weeks ago, the Front End Assistant Manager put in his two weeks notice. Then several phone calls to my wife started. A few co workers wanted to make sure she knew of the opening and for her to apply for the position. After a few rounds of interviews and the final one with the building manager, she went in today for an impromptu meeting. A few minutes ago she called to tell me she was selected for the Assistant Manager position. Yeaaaa for her.

I know most of you will find this disappointing. But with things going on as they are, we need her to have this job. It will allow us to bring in a little more income than with her part time and me full time. We can sock away some money and get some finances moving forward. Which we are not able to do right now. Also, with me donating a liver, or planning on doing such, my current company doesn't have short term disability coverage. We will have to rely on the recipients insurance and donations to cover everything.

It sounds harsh, but refering to where my liver may end up as "the recipient" sounds so cold and unfriendly. But I vowed to keep most personal artifacts out of this blog. So, some things need to be cold and unfriendly.....

Yesterdays test was most likely the last test to be performed before a green or red light is given. Results are supposed to be available mid to late this week. Yes, I am being repetitive, but I don't know who actually reads bottom up on here.

The activities report at the clinic/hospital/office were a bit unnerving. Now let's reflect on most surgery tests. They tell you to not eat or drink past a certain time and in some cases you have to take certain liquids to ensure the tests are good (not for yesterday, but in some cases). Well, when the blood tests were taken (given?) the recipient (already slightly dehydrated from no liquids and hungry from no food) ended up having SIX attempts. Well maybe five attempts and a sixth successfull draw. The skin was welted up from the poor application of a blood draw. Then a witness said the nurse grabbed hold of the wrist and squeezed very hard, apparently in an attempt to make the welts reduce in size. Hello?!?! What kind of garbage care is that?

((In another story, a young child was getting a test done too and the staff was trying to convince the family that the young girl was to be sedated for the test. The family was concise and vocal that the doctors orders said NO SEDATION. The staff at the office continued to try and sedate the little girl.)) I am not sure of the outcome. But this sounded more like the three stooges running the asylum than caring professionals in charge.

Still no call or contact from the newspaper or photographer either.

Monday, October 09, 2006

Concerned for other reasons

I have been perusing other blogs lately. Some of them quite funny (see her Pottymouth Mommy post http://owlhaven.wordpress.com) and others somber.
One was from a guy waiting for a liver transplant http://live-for-life.blogspot.com. I was of course very interested in. I guess I really have been thinking that since my blood type was a match, it would be a done deal. But the reality is, just because I want to donate, doesn't mean I will get to. I am a bit disappointed in this.
More on this later. For now, more work.

Weekend update

I wish I would have watched Saturday Night Live in it's heyday. But I think I was a bit too young to appreciate the humor. Land Shark was a favorite and Chevy doing the news. "I'm Chevy Chase, and your not...." I love it. Good stuff.

I had a pretty good weekend. We went to Kennywood for it's fright nights. They open at 7:00 pm and only have some of the rides running, in a darkened amusement park. Pretty fun. Then they turn all the big buildings into haunted mazes and have the employees in costumes etc. Unfortunately the lines are long and as an adult, it's not like it was as a kid. I know there aren't things like goblins, walking skeletons and zombies. But, it's a good production and I appreciate the hard work they put into it. For the kids, it's the anticipation of the unknown. They get surprised by the people jumping out at them from a dark corner and their memory lasts about .05 seconds because they get surprised around the next corner. I laughed more than anything.

We also had the homecoming parade and two football games this weekend. I shot pictures of the homecoming court at halftime of the HS game. Believe it or not, I didn't shoot any action shots of the youth game that night. It was pretty nice. I watched the cheerleaders do their cheers and the dancers during halftime and the scoreboard become so lopsided that even the parent of the players weren't watching much of the game.

The recipient of my possible liver donation is having another test later today. Like I said last week, we probably won't know anything until late this week. In which I will be traveling.

I got a pamphlet form the Starzl center where they do the liver transplants. All the info is available form their web site so I will regurgitate some of it for you all. To read it form them go here http://livertransplant.upmc.com/LivingLiverDonor.htm

Things I will go through: physical exam, blood tests, chest x-ray, CT scan, ultrasound of my liver ECG and EKG and a psych eval (that ought to be fun).

Today, close to 18,000 people are listed for a liver transplant in the United States. Each year about 9,000 new cases are added to this list, but only 5,000 livers are donated for cadaveric liver transplantation. About 1,400 people die each year waiting for a new liver.

After the Procedure (this is actually taken form the recipient portion, but essentially, the surgery for me is very much the same.
* breathing tube until you can breathe independently
* IV fluids and medication
* bladder catheter to drain urine

Possible Complications
* rejection of transplanted liver
* excessive bleeding
* infection
* bile-duct obstruction or leak
* allergy to anesthesia
* blood clots in the major arteries

(More from the recipient side)
Recovery time varies and may depend, in part, on your overall health before the transplant. Most patients are able to return to normal or near-normal activities 6 to 12 months after transplantation.

It is my understanding my surgery will be about 5 hours long and I will be hospitalized for about a week. I won't be able to lift anything over 10 pounds for a while. It is suggested that I will be out of work for 6-8 weeks.

The liver will return to it's pre op size in about two months which was pretty surprising to me. No alcohol for a year. Like that will be a problem for me. LOL

Now I am wondering if I go through the process and for some reason cannot be a match for the intended. Should I continue for a total stranger? That will be something I need to consider as well.

Friday, October 06, 2006

Wait and see

The week started out prety fast and furious but has wimpered out to a slow crawl. While "I" don't have an appointment next week (that I know of) there is a Monday Dr. visit and test. I'm also pretty sure the results will be something we are all waiting for. I'll guess that those results won't be known until later in the week. So, it will be an agonizingly long weekend and first half of the week until those test results come back.

In the meantime, I have football games to be at Sat, and work travel to attend to Wed/Thur/Fri. I have to be back Friday for bday#11. Can't miss it. Although I have been preparing for it, a child that is growing up and away is a very difficult thing to accept. It's a tough pill to swallow..........

Thursday, October 05, 2006

An amazing thing

This journey I am on is being shared with many different people. Of course I have sent the link to the requisite family and friends. Some of them very, very close and others, not as close. It doesn't matter to me.
I have also been sharing it with pure strangers and of course as the goal becomes more defined, I hope that it will inspire others and be shared with as many.
One person, I am sure is very busy and a prominent professional in his field. He took the time to reply, wishing me well and asking to be kept posted with the newspaper thing. He is one of two collaborators, (a writer and a photographer), that were recognized this year as being the best and were given a Prize in recognition. Thank you JS. I hope the others can follow suit.
With our beliefs, the technology, modern medicine and spirit, we can do amazing things.

Times and dates

I have noticed that the date on top of the bog isn't accurate. It shows three posts for Wednesday but I posted each day (Tue. Wed. Thur). Including this one (Thur) and the one prior was from this morning. Not sure what's up with that. Disregard the dates. Maybe I will have to put in my own dates.

Wednesday, October 04, 2006

Rambling tumbleweed

Not too much backlash from my mass email yesterday. It's becoming interesting. In person you communicate with many non verbal actions. Crossed arms, eye contact, facial expressions and the sort. Then there is the tone, pitch and volume of actual verbal communications. But a blog, doesn't contain any of those things that are soooo important to a human to human interaction. Being me, I also tend to be more direct with my sense of humor and wit (?). Those that know me, know my sense of humor (sic). I care, I wonder, I keep in contact. I love innuendo. I press forward and ALWAYS remember the past. Willing to take a risk while accepting the blame. It might not be crystal clear, but I often retrospect and introspect. It makes me.....ME!

The general consensus is that you all would expect me to something like donate a liver. I heard the term "Crusader". While I think of Patton, Marc Antony, Dr. King, Rosa Parks and other major historical figures as crusaders. I looked the term up on Webster.com. I obviously don't put myself on the same level of historical figures, I did like what I learned. The definition of Crusade is: a remedial enterprise undertaken with zeal and enthusiasm. Thus one that takes on a something with zeal and enthusiasim is.....a crusader. I accept this moniker. Thanks LP. You should know from your own trips to A and G.

Another thought might be that the docs find something wrong with ME. I have had migraine headaches for years. Maybe it's a tumor..."it's not a tumor...." Ala Ahhhnold Schwartzenegger (Kindergarten Cop). LOL I have another headache today. Same place same intensity. But I am going to tey and wait this one out. I suppose Red Robin for lunch will placate me.

Follow me as I take advantage

The blog, the newspaper, and a few other things coming up are all about pushing the "cause" to the extreme. I haven't been one to take on some things half assed. Granted I might be lazy, so there are some things I just don't want to do. Others, I go beyond normal expectations. This happens to be one.

I am sure some will say this is a selfish, self serving (redundant?) thing that I am doing by asking the paper come in for a story and put all this stuff in a blog. Hoping for (my) 15 minutes of fame. Welllllll.......they're right. AND wrong.

I have been put into a situation, and since I think in strange ways, I want to take advantage of this situation.
Is it for my benefit? Yes. Will anyone else benefit? Yes. Can harm be done? Yes. Have I thought of all the ramifications? No. Have I though of all the good things that will come? No.

What's on my mind? I have given a lot of thought about the possibility of me dying on the operating room table or after the surgery because of complications. It is a very strange feeling to know, or think you know, that my life could end in a few weeks (months?) or so because I have decided to become a live liver donor. I will have to make peace with my God before that time comes.
The thought of death brings fear to me about my family. Especially my kids. As most any parent would tell you. Their biggest fear is the death or loss of their child. Second is to leave them prematurely. I want to be there to cry like a fool during my kids wedding(s). You want to see a blubbering mess? Play "Butterfly Kisses" by Bob Carlisle or "I Don't Want to Miss a Thing" by Aerosmith. I want to help teach them drive and comfort them after their first crush goes awry. But the desire to extend the life of someone as a donor is very strange indeed.

I have been teaching my kids to take advantage of opportunities. I have the opportunity to help save a life. I have the opportunity to bring a little more light to something like live donors, liver transplants and I am sure a host of other things that will crop up in the coming months. Will it become as big as I hope. Probably not. But I hope to be ready to follow that path when it presents itself. Follow me on that journey will you? I am taking advantage of life.

There's a story there, you just have to dig.

Last night, I received the blessing on having the newspaper follow do a story about the transplant. I must say, I was surprised. I thought I was going to have to fight for this one. The two of us have very differing views on communication. She calls everyone by phone (more control ???) ((not "controlling", just in control of who knows what)) and I put it in an email, web page or in this case a blog (lazy ???) for the whole world to see (ie, no control). (pssssttt, don't tell her about this blog). Anyway, I am pretty sure I won't end up on Technorati or Wired, but hey, it might be my (our) own 15 minutes of fame.

I received a call from Douglass Oster the photo editor of the Post Gazette in Pittsburgh. He has assigned photographer Steve Allen, to us....that sounds weird....and we should hear from him sometime over the next week or so. (I assume). We will then have a family sit down so the photog can go over what the expectations will be and other items. Not sure if there will be a journalist assigned. I suppose it depends on if they think it will actually become a story.

New developments - There has to be a few more tests to perform next week to make sure
everything is on the up and up. The doc wanted to double check a few things before the go ahead is issued. So, next week could be the time to press forward, or a time to return, gather and head another direction. No, I didn't include details, because I don't' have any. Yet.

Tuesday, October 03, 2006

3,2,1 contact

Got a call from UPMC. They will be sending me a packet of info regarding the living donor program. I did get some info on the phone. Basically I will be out of work for 6 to 8 weeks, no heavy lifting and no alcohol for a year. Honestly, it's not a biggie. Those wines I just bought will just be a little better in a year.

The one issue I found out, was that since I work for a small company, I do not have short term disability incurance. That item might be a HUGE issue. I have not talked to my CEO yet. It will have to happen very soon since this ball is rolling.

I haven't heard from the photo editor yet. He was going to call me today.

Monday, October 02, 2006

I have passed the first test. Without studying.

Dateline Portland OR - While on a job assignment, I received a call from my wife that indicated her dad (my father in law) is in need of a liver. She asked my blood type, in which I had no idea. "Red?" I thought. "Look on my dog tags in the basement" was my vocal reply. We chatted a bit and I could hear her concern in her voice, then hung up. Later that day, she asked, with trepidation if I would consider becoming a live liver donor. My blood type was a possible match for her father in his quest to get a new liver. My answer was decidedly fast, "Yes", I would be willing to donate my liver (or parts of it) to her, my, OUR dad.

Backstory - He was not feeling well and we had all known his liver wasn't in the best of shape.

Forward to current - He had the appointments all lined up, gave his blood, took the psych evals and then the results came in the form of a phone call. He is a candidate to receive a liver. The transplant team believes his age and health will result in a successfull surgery. They're the experts.

Dateline Pittsburgh PA - I have considered the transplant and want the story to be followed to possibly become something bigger. Call it a vanity. Call it different. Call it what you want. Good, bad or otherwise. A 2006 Pulitzer prize for photography and writing went to a great story about Marine grief counselors.
Jim Sheeler of the Rocky Mountain News, Denver, Colo. and Todd Heisler of the Rocky Mountain News, Denver, Colo. were collaborating on the story. While I don't want a Pulitzer...(okay, I would) I would llike to offer an opportunity for a photog and journalist to be able to do the same. I have extended the story idea to a local newspaper. Tomorrow, I will have the first talks with the photo editor.

While I want to share my story, my in laws are not as eager. I am waiting for the "answer" as to their decision to have a photog/journalist to include them in on the story. It might be a make or break deal, but I will sure push for this to happen.