To achieve (fill in the blank), you must have a cause.

The end is near

2007-10-09T10:53:00.000-04:00

Friday Oct 5th is this blogs birthday (1 year old now). It was also the day 3,000 hits were recorded. Kind of neat, I suppose.

But this will also probably be the blogs last entry. My final post.

This blog was to be about my experience with live liver organ donation. I wanted to let others know what it was like to donate an organ. It was started because the local hospital, where the transplant was to take place, wouldn't allow this areas largest newspaper to do a story about me and my donation experience. I wanted to get the word out in case I wasn't able to donate my liver. Which was what happened.

I also used ambiguous, yet obvious pseudonyms for the characters in and around me. Because of this blog, I received a pretty large amount of flack from people that didn't like what I was writing about. All of which can be found here, on the blog.

Because of that, I chose to stop putting in personal accounts and observances of the characters so I could comply with those few that were unhappy. And, because of that, the only thing left was to regurgitate information that was already available to anyone that can perform a Google search. I can't do that anymore. If it's not personal, it's not what I want to do. The blog has become old, stale and stagnant.

I want to thank most of you for stopping by every so often and supporting me over the last year when there was real honest content on the blog. It was a wonderful ride.....

I end with today's numbers:

Waiting list candidates as of today 11:09am
All	97,504

http://www.optn.org/data/

Got liver?

2007-09-23T23:08:00.000-04:00

Carl did, and here is his blog.
http://carlanddawn.blogspot.com

News from around the world

2007-09-23T23:01:00.000-04:00

Well, actually from one other country. Here is a small article on Yahoo News, from Hong Kong about a living donor. Click here. Thanks to Josh for finding it.

There is always hope

2007-09-18T00:17:00.001-04:00

On Nightline (ABC News) there was a story about a liver transplant.

Curent numbers

2007-09-11T09:31:00.000-04:00

Waiting list candidates as of today 9:31am 9/11/07
97,216
http://www.optn.org/data

332 people have been added to the waiting list in 23 days.

So cool

2007-08-26T00:11:00.000-04:00

http://www.foxnews.com/story/0,2933,294607,00.html
FoxNews.com reported that an 8 month old boy received a FIVE organ transplant of the gastrointestinal tract. The organs did come from a single donor.

A side note

2007-08-21T01:18:00.000-04:00

One of the web sites I visit frequently had this article.
http://www.sportsshooter.com/news/1814
It is about a photographer that documented the last days of a womans life very close and "inside". He talks about being inside versus outside regarding the subject.

When I asked a photographer from a local paper to document my journey as a liver donor, it was this access I was trying to provide. Not many times do they get that kind of an opportunity.

Current numbers

2007-08-20T17:16:00.000-04:00

Waiting list candidates 96,884 as of today 5:15pm
Data from OPTN.org

It's amazing how fast the numbers are rising. We will have 100,000 people waiting for an organ probably in less than a year (by my estimate nothing to substantiate those numbers). I can only assume that the number of people that die every day will rise accordingly. Right now, I believe that number is about 17 people die every day waiting for an organ.

CORE has updated is Facts and Statistics page. It's an interesting read.

Concerning issues

2007-08-20T17:04:00.000-04:00

Apparently I have pushed someones buttons. I got this anonymous comment:
Ok, after reading the latest on your website, I really must say that you have your self up on a high pedestal, and it is not only Brad and I that think you are truly an ass.

That being said, the only reason we read it, is so we can see how much you think of your self and see how big your head has gotten for the day.

I emailed the above this question:
Would you be willing to share exactly what has gotten so many people on a tear? (that's TEAR as in RIP, not tear as in crying).

Then got this anonymous comment:
You are an ass.

Never did get a response to my question. So, apparently my whole blog has been all about me. Well, yes, IT IS MY BLOG. From my point of view and my life. I guess it will be a bit biased. I still try to be pretty fair in my representation of the facts of life and the goings on.

So, when someone reads my blog only to see how big my head has gotten and it makes them so upset. Stop reading. Pretty simple.

Back in (limited) action

2007-08-17T12:55:00.000-04:00

I just returned from my 20 year high school reunion this morning. I can say with enthusiasm that it was the highlight of the year. Possibly the best week(end) in the past 5 years.

I had so much fun it was pretty difficult to return to reality. But alas, I am back here in the Pitt and dealing with dirty floors, a backed up sewer, boxes and boxes of stuff and of course the humidity.

"Yeah but it's a dry heat" was never so right. The arid southeast corner of the Great State of WA was hitting highs of 90-100+ degrees and it felt so damn good. Hot, yes it's hot. But at under 30% humidity (purely speculatory, I really don't know), who cares. In western PA, we have more like 40, 60 and 80%. IT SUCKS. I took a shower last night and had to lay on a towel in bed because I couldn't dry off.

While I was gone It appears that someone got very upset about a sentence or paragraph in one of my blog posts.

Well, the story I got was that PERSON_A read my blog. Then PERSON_A (or their spouse) called the recipients spouse. The recipients spouse got all upset and freaked out on my wife. My wife then called me.

I was reading all my posts to see what was so inflammatory. Of course the areas I thought would have put someone on the ropes were not even close to what was being referenced. I am still not 100% sure about the specific posts that caused such a ruckus.

So.....the moral of this story.

IF YOU HAVE A PROBLEM WITH WHAT I POST CONTACT ME FOR CLARIFICATION.

I have already made a few concessions in my web activities. I am not using names here on the blog to protect the innocent (or the stupid). I use carefully selected pseudonyms. To most, it's not hard to add everything up. To many, no one cares. I also don't blog about everything, like over at Dooce. I could, but that would open another can of worms that I won't go into. Although putting in names and a full accounting of events might be more fun.

Although, I could be like others in this world and not care, that wouldn't be me. I do care. I care enough to actually post here to let everyone know what the hell is happening. I care enough that I offered my own damn liver to help the recipient out. I cared enough that when my wife asked, I had already gone through the thought process to be able to say "yes, I will donate". I even said yes to consolidating houses to help the recipient and his spouse since they are not able to sustain individual living on their own. Along those lines I clean the house (sometimes) I drive them to some appointments. I cook and have a few conversations every day. I deal with the nuances of their personalities. I even hold my tongue on occasion (rarely). We even go to dinner together when I can drag the recipients spouse off the couch. Does it sound like fun? Well, for the past 4 years, 3 months and several days, every time I speak to one of my family members I field the questions and answer session of when will we be moving back.

I DON'T KNOW. If it were up to me, I would relocate to 99336 tomorrow. But my wife and the recipients spouse have more say than the kids, myself and the recipient. Their arguments are valid. I understand. But I don't have to like it. So, here were are and here we will stay until death do us part.

Employment has also kept us here, but that too is another LONG potentially volatile discussion.

To compare that to some of the other family members, I have done a lot for the recipient and spouse. I know that my wife and I are in a unique situation.

But everyone else is too, so don't go there.

We took this on (taking care of them) many many years ago because of another situation that we were in. I will also not forget that the recipient and spouse have done a LOT for my wife and I. It doesn't go unnoticed. I also have my own sets of parents to think about. This is probably a precursor for what the rest of my life will be about.

For those that question me, walk a mile in my shoes.

So hows that for pissing in your cheerios.

Back in action

2007-08-05T11:02:00.000-04:00

Okay, wow, like, it's been a while.
I still have a few hangers on. I appreciate it. Really, I do.

Now that I have a real job, (taking care of my kids) I don't have time for the frivolous stuff like blogging. (tongue in cheek) Sort of.

So, here's a nutshell update.

Moved out (you already know that)
No regular paycheck (you already know that too)
Trying to get a photography studio off the ground.
Looking for a corporate type gig (otherwise know as a "job")
Trying to adjust to living in a box with 5 other people......moving in with the recipient and the recipient's spouse is a HUGE adjustment. My kids are not as enthusiastic about it anymore either. I am sure it goes both ways though.

Next week I get to go "home" for a few days. My 20 year class reunion is Aug 10/11. Almost didn't get to go. I would have been truly bummed if that had happened. Truly.

For three weeks, I have been hanging out with our summer visitor.....She is legally a niece. But because of my superior way of being specifically ambiguous, I will call her....OldestD. It has been fun, and trying. From OldestD's perspective, I am the "entertainment". Since I don't have a day job, it's up to me to keep the kids entertained. Swimming, food, shopping, trips ANYWHERE out of the house. You know. Everything I have waited to do since I was a young teenager. Being a DAD is nothing short of great. Wish OldestD could stay forever. Wish she could have been with us these past years....

Other things happening are:
The recipient has been taken off some more medications. He is doing very well since the transplant. Even in the past three weeks, things are better. He was really tired for quite some time. Early to bed. Late to rise. Mid day nap for a few hours, then back to bed early at night. Now, the nap is essentially gone. Strength is still low and a few other issues exist like the lost feeling in fingers of the left hand. Still there.

I have been monitoring the numbers, but obviously haven't posted any. Here they are:
Waiting list candidates: 96,940 as of today 11:22am (8/5/07)
It won't be long until the list tops 97 THOUSAND people waiting for an organ. I guess I should do my part.

A little FYI. Over the summer, there was an ad campaign on TV about teen drivers. While I am not a teen driver, I have one that is of age, and two that are becoming aware of driving. They ask the speed limit. Recognize red lights (and green ones too). The stats from SADD (culled from the NTSB) say in 2005, 43,200 died in traffic accidents. That same year, 3,467 15- to 20-year-old drivers were killed in accidents. (Not in additions to, but as a part of).

Looking on the CORE web site. I found some interesting bits of information. First, one:

If I die of a heart attack, can I be an organ donor?
No. For traditional organ donation, a person needs to be in a hospital and on a ventilator at the time of death. If someone dies of a heart attack, that person may donate tissue, but not organs.

Another one that is a big bummer, but understandable (source here) :

Donation Facts
-Under a program called "Routine Referral"
...However, when an individual dies outside the hospital setting, the individual may be able to donate tissue or corneas, but not organs.

Those two items have been the most troubling for me. The death outside a hospital was surprising. But my limited knowledge of anatomy, I will assume that when the heart stops beating, the organs begin to deteriorate. Thus, in a car accident, it can be several minutes (tens of minutes) before a crew could extricate a decedent. By that time the organs are in pretty bad shape. Not exactly something to put into another person huh.

With those two items, I can begin to understand how important it is to have more and more people to be organ donors. Right now, so many people die in car accidents, they are probably the bulk of organ donors. If the death occurs in the car, then they cannot donate.

Kind of a strange irony.

Current events

2007-07-16T10:59:00.000-04:00

We are finally moved out of the old place. It took THREE 26 foot moving trucks plus our van (for the delicate stuff) and two regular pickup truck loads and a trailer. Damn man, that's TOO much SH!T. All I can say, is we better have one helluva yard sale soon.

So now I have internet access and can hopefully, get back to the better tasks at hand.

Since I have been moving literally every day for the last three weeks, it's time for a break. But there is no rest in the plan. We have so much chaos in our lives right now, it affecting our sleep, our attitudes, our logic and of course how we all get along.

The house we are in now is nice and big but the kitchen on the main floor is not set up very well. The former owner really did a crappy job in almost everything he touched. The rumor was he had electrical skills. Well, skill is not the word I think of. We had two electricians come in to take a look, and they both said the house should not have passed inspection. We have several hundred dollars to a few thousand dollars worth of work that needs to be done because of his "work". Hopefully, we can do some of the work ourselves and save on the non-existent cash.

One other item is how the main floor kitchen was put together with zero insight. (I wasn't involved at all). The food is in four different and separate locations. Drinking glasses are in such a bad place everyone struggles to get at them. But no one is willing to admit they were put in a bad place nor will they move them to a better place. So I relish in a sadistic joy as I watch everyone struggle getting a freaking water glass.

I could go on, but I don't feel like throwing myself into a pit of negativity, there will be plenty of time for my bitterness to rise to the surface.

How's this for a real causal effect

2007-06-26T00:55:00.000-04:00

TNT channel has a new series centered around organ transplants.
http://www.upmc.com and the TNT site.

Current events

2007-06-20T21:17:00.000-04:00

I am heading in a different direction professionally. I have two photographers looking over my portfolio and am thinking about moving whole heartedly towards being a pro photog. Another local pro has offered me a 1/3 partnership. We will talk about this in more detail Friday morning.

I also got a call from "C" (you can see her picture here http://www.flickr.com/photos/oneaday2007/513681626) her daughter is an up and coming photog and she wanted to know if I could offer any guidance. Of course I will!

One of the things the recipient gets is TIRED. He naps for a few hours every afternoon and I think he's getting a full night's sleep. But after 3 months, he can do more things, but it really saps the energy. We worked together today on a workbench in the new garage. I could see him struggling with the tools and with his strength. While it's better than is was 6 or 12 months ago, it's tough to see him like this.

I put up a new link down on to the right, but here it is anyway http://transplantheadquarters.blogspot.com there are many thing organ donation related on here. I haven't gone to far into it, but it's a plethera of info.

Happy Birthday Bro

2007-06-18T14:58:00.000-04:00

It's my brothers birthday and I want to wish him a happy one!

Melancholy funk

2007-06-18T10:35:00.000-04:00

Much has happened over the past 7-10 days. I won't bore you with the normal details....if you're lucky.

I finished my first professional photo portfolio a few weeks ago. I culled through all of 2006 (35,000 images) to pull my 50 favorite shots. Currently I have two professionals reviewing it, one on each coast. When I get my reviews back, I will share with you all the....results.

The wife, kids and I took our first official family vacation together last week. Suffice to say, it wasn't without it's issues. We went to the Franklin Institute in Philadelphia to see the treasures of the Pharaohs. I have been planning it since the fall of 2006. We left a few minutes late on Wednesday....well if 240 minutes would be considered late. We also stopped in Gettysburg during a rain storm. Making it to our hotel in NJ, we eventually made it to the Franklin Inst. at 10 the next morning for our ticketed time slot. As we entered, the tickets were found out to be FOUR months old. When I purchased them, it was on Feb 12. The time/date was Feb 14 not June 14th. DAMN. I was in tears. I had been planning this trip so long and they wouldn't let us in. I had to buy tickets again, if they were available. Luckily they were and to the Franklin Inst. honor, they allowed us to purchase at a membership price rather than the normal price so that saved us a few dollars....

Saturday was the end of soccer. It was a long and very satisfying 12 weeks of soccer. My idea of an adult league was a resounding success. They will all be playing in pickup games through the summer.

The stick and ball season is almost done. The final record will be something like 14 losses and zero wins.

Grade reports came back last week too. Mostly even. A few improvements. My plan of using a cell phone for a reward wasn't enough. They studied only when they would get something now, not in the future.

We moved the recipients....stuff....from the old garage and it now FILLS the new smaller garage. I have moved some of the same exact items, three times now. Some of that stuff has been touched three times in four years. Only when it's moved. There's gonna be a big ass yard sale someday. Sell it, toss it or leave it. I'm not moving it again.

We started cleaning the 2nd floor of the new house. It's disgusting. The former occupant smoked and the previously white walls are GRAY with smoke.

I got to over hear the recipient talking to a former neighbor regarding his current health. He says he feels good. Unfortunately, he isn't following all of the doctors guidelines. But for the most part, his he only suffers from some tiredness. His energy level isn't what it used to be. He also has lost the feeling in the three fingers of his left hand. It' the same issue as before, but after shock therapy....?.... nothing has changed so we can probably expect that is the payment for a new liver.

We have to be out of the current rental the end of this month and we are nowhere close to packed or the new place prepared for us to move in. Then again, the recipient and his spouse are using all the boxes we need to pack. Not only that, but all their stuff is in the living and dining rooms as well as the kitchen. So we don't have a place to put our living room, dining room or kitchen stuff. Basically, I am sure it will go as it did two years ago. my wife and the recipients spouse will call the shots and I will have to deal with it.

I love my life, I just wish I enjoyed it.

Quote Of The Day

2007-06-12T14:38:00.000-04:00

“…If you talk to a guy in the Apple Store, you already know he's going to be modern and up-to-date and sober. It's healthier than picking up someone in a bar.” - unknown Apple store customer

Not what we like to hear

2007-06-11T23:16:00.000-04:00

http://www.foxnews.com/story/0,2933,280732,00.html

A woman working for Tennessee Apparel wanted to donate a kidney to a distant relative, sort of. But the company won't keep her job available if she donates. Because the surgery is an elective, they don't have to follow the FMLA.

Now, when I first read this, I was a bit concerned about it. But after reading the article, she is also the sole financial provider for the family. Strike one. She has three kids, that apparently get sick often. Strike two. The third strike for me is thinking about the lack of care she nad her immediate family will get during her recovery. Sure, organ donation is important, but she and her family is too.

This is just one fo the issues facing everyone that is a living donor, what happens after I donate.

A new era

2007-06-11T13:54:00.000-04:00

Over the past week to two weeks, I have been coming up with something of a new plan for my professional career path. Flash back to last summer when the recipient was really sick, we (actually just me) were thinking that if the recipient did pass away, we would fast track it back to the Great State of WA. Come fall, I was offering a slab of my own liver. Last November, I wasn't able to donate. This winter (February) the recipient received a liver. Spring=change, and we bought a house here north of Pittsburgh, thus securing our medium term stay, extending the 5 years that we (again, probably just me) would give Pittsburgh......sigh

Now, given my wifes penchant for being in a constant state of chaos, we are getting ready to move into said house. The recipient and spouse have most of their stuff in the house, and the flooring and paint is supposed to be going in. When I say "in the house" that's literally. The dining room and living rooms are FULL of their stuff. Both floors also have to be replaced so we will be doing a lot of move everything there, then move it again then move it AGAIN. Something I loathe!

So, that effectively brings you current.

The new era.....I would really like to head in the direction of a photography. Really! I would. Our new house has an out building that could server as an office/SMALL studio. I mean REALLY small studio. I also got a shot of hope from a Canadian web site that focuses on social change. You can see their images here http://www.photosensitive.com. Last month I was also reading about NGO's, otherwise known as Non Governmental Organizations. BIG non profits that are about bringing about the betterment of the world, one country at a time. The photographers that work for the NGO's are usually contract photogs. In some cases they are actually staff employees, but not often.

Right now I am in the discovery phase of the process. After I do my research, I will take the information I learn and to move forward by creating a non profit foundation/organization. File for the 501(c)(3) tax status. That will put me in the position of being able to request tax exempt donations from large corporations and individuals that might be sympathetic to organ donation and it's various associated causes. Right now, my cause is commendable, but I can honestly say, being successful puts me into the position of sacrifice that frankly, I am not prepared to perform. I don't mind working hard, but there has to be a payoff. My family can't eat off great pictures of organ donors. If I can actually pull a salary as a photographer, then putting 110% into this cause can then actually create some change. To wit there are 96,667 people waiting for organs this afternoon.

I have another photographer friend of mine that has offered to pull me in as a 1/3 partner. That should bring is some weddings and perhaps some team and individual portrait jobs next spring/summer. It's a tough gig to work full time on the weekdays, then shoot weddings and sports on the weekends. That's where I am not willing to sacrifice quite yet. The kids are young and I am involved, so I an staying on the side of caution before I jump headlong in to the mosh pit.

Yeah, I am that good

2007-06-06T18:30:00.000-04:00

Over the past few weeks I have had the opportunity to spend quite a bit of time with my kids. For those of you that know me, you know my standing on them, their activities and my devotion.

Last week, one of my offspring asked for a sleepover. No problem. Then another friend was added. Soon, the sibling wanted in on the action. That too, resulted in another friend.

Before long, we went from one sleeping over to EIGHT.

I had planned for dinner at a certain time and things weren't going too well. Food=good, timeliness=bad.

No matter, this is what I live to do. Cook, entertain and make people happy. I watched the kids hang out and chat. Then they asked to head to the store across the street.

As dinner was served and eaten, I really relished in the moment. So much so that my wife noticed that I was probably glowing and called me "super dad". I was the happiest I had been in quite some time. They wanted to go to ice cream and I offered up some cash for those that weren't prepared. (I even got change back)."Sure, but be careful." (I also WORRY, A LOT). They all headed off, over the hill. It was really a neat sight to watch the group as they mingled, jockeyed for position and really got along. My kids included.

After the ice cream was eaten, the kids got a bit restless. One of my claims came out with a water balloon and the war was on! I even let them throw water balloons from the upstairs bathroom window. (I did laugh thinking that "mom" would nave never allowed that!)

Looking back, I got to see, and really pay attention to the inner workings of boys, girls, and boy-girl relationships. It was just so neat to watch and be privy to what happens.

Later that night, they were all down in the theater hanging out. It's the only room where you can put your feet up, eat and hang out on the furniture. Yeah, it's cool!

Anyway, they were playing a game and I got to play too. Being near 40 and getting accepted (to a certain level) by your children's peers, is a pretty big coup. I work very hard at letting all of them know my expectations. I don't mince words and I treat all of them with respect. I also am very adamant in that I expect some respect in return.

Forward to last night......I was at a sporting event with one of my kids. It is near the end of the season and the overall record is so far past dismal, it's beyond sad. No wins and really no close games. No matter, the kids are still playing.

I noticed that the opposing team was similarly matched in skills. Something we haven't experienced this season. All the other teams play year round, or the coaches are effectively a$$holes and winning is the only option. Those coaches like to know they walked away from a game that the score is 2 to 26. Class acts I tell you.......but pull the "Cl" and you know what you get.

So, two of our coaches were absent this game. So me being the one to take advantage of a situation, I pretended to be a coach. I did what I do naturally.

Recognize the talent.
Challenge the mind.
Motivate the heart.

I spoke encouragement. I challenged the kids. I made a few changes with their bats and how they hold the grip. It worked. Some got hits that normally don't. Many got on base. And several scored.

Sure, the team was better. But we...THEY scored 11 runs. Three times anything they had scored before. On several occasions, a player said they liked being ENCOURAGED.

While it wasn't just me, the other coaches were more encouraging too and they actually coached, where I just tried different things. But I did something different. I spoke to the players DIFFERENTLY. I treated them with respect. I think they responded positively to that.

Sure we lost, but they had fun doing it and enjoyed the game. I know it was the best one I had watched.

We have several more games left in the season, all against very good teams. Hopefully, they can play as well these next few games as they did this last one. But I suppose it might also depend on if I can be in a position that I was last night.

I know it wasn't because of me. But I know I was part of it.

Welcome

2007-06-05T15:28:00.000-04:00

I would like to congratulate my brother and his wife on the birth of their child yesterday.
Pretty cool to have another one in our family, hopefully I will see her before she graduates from high school.

More time wasters

2007-06-01T16:42:00.000-04:00

For those that use Google maps, or for those that don't.
This site has some funny issues with the new version (addition) of Google's Street View.
http://www.laudontech.com/StreetView/streetview.html

Opinionated cynic

2007-06-01T10:44:00.000-04:00

Woof

Several things need to blogged today, but I am diverting from the important to allow myself some therapy. Bear with me.

We...er..."I" signed on the line of death, sold my soul, determined my (short term) destiny and bought a house last week. Last Friday actually. I still claim it was under duress so to speak. Regardless, I took one, two (and more) for the team. Even though the team consists of two chiefs and a handful of Indians. I feel like we're headed into Wabash and I just hope it doesn't turn into another St. Claire's defeat. Although the Indians were victorious in that one. Maybe I feel more like St Claire.......

While I am not great at anyone thing, I am pretty good at many things. Yesterday, I prototyped a cover for a robotic arm. Then I picked up the camera to take a picture of it for a marketing campaign.
Last week, when getting everything packed for phase 1 of the move, I fit nearly the whole house in a 26 foot U-Haul, with some room to spare. While not something you put on the resume, I was pretty damn proud of the job I did. Then the wife and I unloaded it in about three hours. Just the two of us. A great time I tell ya.

I won't go into any detail of the garage, but those of you that lived through the first move in '03, it isn't any different, but possibly worse. How many broken riding lawn mowers should one person own? For gosh sake, throw something away would ya?! Look, there's the top (side, part, crank, whatever) of a '49 make-a-name-up-here-cuz-it-ain't-made-anymore manufactured somethingorrather.

Me: "Um...do you have any other parts to make it work?"

Him: "Well, no, but it's a classic (top, side, part, crank, whatever) of a '49 make-a-name-up-here-cuz-it-ain't-made-anymore manufactured somethingorrather."

Me: (to myself) "That's......just.....really nice........"

Okay, so I told you the details. Oops.

Keep it moving, there's nothing to see here folks.

I have a good mind for small project management and a decent analytical skill set. It's never been truly tested in a professional setting, so perhaps my analytical skills are more "opinions" versus true skills. Just don't ask my wife.

We are in the early throes of phase 2 of the move.

The new house needs some cleaning. A smoking renter lived there and the carpet in the whole second floor needs to be replaced or deep cleaned. The attic/3rd floor also needs to be gutted floor to ceiling. The main floor is livable but the bedroom needs flooring. The carpet was removed (old and ugly) and we have been waiting for someone to make a flooring color decision.

......................waiting...........................waiting..........................waiting.............................still waiting................................(guess)................................

I started to write this post this morning then got side tracked with other things. It's amazing how time will cool the creative mind.

In the news

2007-05-29T13:20:00.000-04:00

A Dutch TV show is raising some controversy with it's crazy antics. A woman is going to have a game show to see who will get one of her kidneys while she is alive.
http://www.foxnews.com/story/0,2933,276043,00.html
http://www.msnbc.msn.com/id/18919768

It interesting that in the article people are quoted saying it disgusting that this show will air and they want to shut it down. Yet, no one offers any suggestions on how to fix the issue of people waiting so long for an organ. In the Netherlands, their average wait is 4 years.

It's great that someone took some outside thinking to bring about an awareness. Here in the US, our numbers are significantly higher than those in the Netherlands. Currently the accepted (average) number is 17 people die every day waiting for an organ. That puts us around 6,200 annual deaths. Right now, there are 96,470 people on the waiting list.

Link of the day

2007-05-25T15:01:00.000-04:00

http://overheardinnewyork.com

Southern hospitality

2007-05-25T13:59:00.000-04:00

In all honesty, I was a mark. But (I hope) it became more than that.

"C" needed more numbers. And truthfully, the first words that I digested were "5,000 free miles".

Funny, that's what I need to get a ticket back home for my 20 year reunion this summer. She asked me to fill out a credit application. Quickly showing me where to sign, fill in and check there, there and there. It was rushed but if I actually had time to think about it, I am sure I wouldn't have done it....but that 5,000 free miles was my enticement.

I slowed and tried to have a conversation with "C". She had numbers to get and I wasn't helping by keeping her from the "zone". Airports are a target rich environment, but time is fleeting. Her numbers were impressive. Much more than I would have thought.

After I filled out the application, I watched her. Well, I watched for a couple of reasons. One, she was dynamic. Very engaging. Secondly, she's beautiful and had an incredible southern voice. She would engage the passengers as they went from gate to gate. Some would slow and several would approach. Her style was all charm and hospitality. In between her attempts to get applicants, we would engage in small talk. Before long my plane was ready to board so I had to move along. After I checked in, (I was flying stand by) I returned to ask if I could take her picture for a project. We discussed the One A Day project and her standing on organ donation. She got involved many years ago when a family member got sick. Organ donation wouldn't have helped in that case, but it was still something that was near and dear to her.

Currently, she helps raise money for sick children. She had contacts to celebrities and creates events involving these celebrities and the children. But she is a behind the scenes person. Ironically, I put her front and center in my camera and she shines.

You can see her picture here:
http://www.flickr.com/photos/oneaday2007/513681626
or all the OAD images here:
http://www.flickr.com/photos/oneaday2007

It's over

2007-05-25T10:03:00.000-04:00

It finally happened. After 13 years, of a hot and cold relationship it’s done. Lately, I just couldn’t wrap my hands around it. The years made the middle pretty wiggly. We be doing our thing and if I didn’t treat her just right sometimes she would end up on the floor with a big whump. The kids would run in and ask if everything was okay. I would mutter out a “yes”. But alas after 13 years, the iron has died.

It's been a week

2007-05-24T13:28:00.000-04:00

First off, I got bored with the blog look so I changed everything. I still like the black background best but it's not the best for reading. I will stick with white until I find the right combination of text and color.

I am back from Nashville TN and wasn't all that impressed. Granted, I only saw Stones River civil war site and was downtown on Broadway during the day. At night with the sights and sounds, I am sure it's a much better place. I ate at a dinner theater restaurant that started to serve breakfast and lunch. Wellllll, lunch specials are last nights dinner covered in gravy. Probably would have had a better sandwich at Subway. It would have been fresher for sure.

In another post, I mentioned a bit of chaos in our lives.....good God was I right. After three days away, I came back to a house that looks like something you would see in a reality TV show. We have SEVEN people living on our rental house right now. Five adults and two kids. I am not hammering on anyone, it's just so many people and so much stuff. There just isn't anywhere to put it. We have bags of food on EVERY counter. The refrigerator....well, I am OCD when it comes to the kitchen. Everything has a place and dammit, make sure everything is in it's place. When I opened the door this morning, things fell out and I was about to freak on all who could hear. There was medicine, half opened bottles (with lids) and containers falling out. It was all I could do to not literally throw EVERYTHING AWAY and start over. I was not in a good mood at that point. Sooooo, I followed suit and picked the crap off the floor and THREW it back in the fridge. I didn't care who, or what. If you are missing something that is supposed to be in there, find it your self. It's probably in the back under what ever you put in there before that isn't supposed to be there but somewhere else.......DAMMIT!!

Okay, I have vented and the next post, being a few days late, will be regrading organ donation and the One A Day project.

When it rains...it pours

2007-05-16T15:03:00.000-04:00

May 15 - Tuesday - (wife) close on 28 Station St. (new owners want to take possession May 20)
May 15 - Tuesday - (me) sign loan paperwork for 1635 4th Ave (will not close on 1635 until week of 5/21 (note the gap))
May 16 - Wednesday - pick up U-Haul begin filling it with lots of sh!t
May 17 - Thursday - (wife) work 12-14 hour days, pack U-Haul, wife sick, has been for three days, the recipient cannot pick up more than 30 lbs (me) work 10 hour days but not home until after 7pm pack U-Haul at night
May 18 - Friday - (wife) work 12-14 hour days, pack U-Haul, wife sick, has been for four days, the recipient cannot pick up more than 30 lbs (me) work 10 hour days but not home until after 7pm pack U-Haul at night
May 19 - Saturday - (everyone) adult soccer at 7:30am, youth soccer at 9:00am, softball at 9:00, mandatory dance practice at 12:30pm
May 20 - Sunday - (everyone) new owners get keys to 28 Station St (old occupants (the recipient and spouse) have no where to live) Looks like a hotel for a week, 2007 dance recital most of the day Sunday
May 21 - Monday - (me) head to Nashville for the week, wife still sick, kids tired of us being tired and short tempered, the recipient and spouse still in a hotel, every one says sh!t a lot and vow to sell everything before we move again
May 21-25 - week of - close on 1635 house and can't move in because the renter is (probably) still living there, we have unloaded all the sh!t from 28 Station St and it sits in the storage unit. We moved it once and have to move it all again into the 1635 house within a week.

Neat story

2007-05-11T14:51:00.000-04:00

I was talking to someone today and they told me about story of their relatives, co workers spouse.....whew...was diagnosed with a liver disease. Not long after, they said they need a transplant. VERY shortly after that, they received one BUT they were asked if they would be willing to donate a portion of that new liver to a pediatric patient waiting for a liver too. Of course, they said yes.

Sorry i don't have any more details, it's pretty much how it was told to me. But the fact that more and more of these transplants are happening is pretty neat. Since the liver regenerates from any size, the pediatric patients only need a very small portion and it will grow to it's proper size once implanted. The adult can live without a that small portion given to the child too since the larger portion will regenerate to it's proper size.

That's soooo, cooool.

Encore, encore

2007-05-10T10:48:00.000-04:00

"I called out Sue's name twice, and the second time she raised her hand," he said. "I announced we had to get her to Pittsburgh, to the children's hospital, that they had a heart for her little boy." - Pennsylvania State Police

That is an excerpt from this Fox News article about a boy getting an opportunity at life from a live saving organ donor but also, because of technology. They were at a concert and his mother had a cell phone that was able to be located from GPS, but I think it was triangulation. GPS is a receiver, cell phones send out signals that can be triangulated.

If the venue that she was at had a cell phone jammer (which is illegal right now in the US but some want to change that) or if her phone was turned off, he may have missed an opportunity at a new heart.

Jammer info:
http://electronics.howstuffworks.com/cell-phone-jammer.htm
http://www.slate.com/id/2092059/ This is an old article, but may still apply.
http://wireless.fcc.gov/services/index.htm?job=operations_2&id=cellular

The important thing is the fact that someone donated their heart to John.
Our current numbers are:

Waiting list candidates as of today 10:59am
All	96,371
Kidney	71,598
Pancreas	1,683
Kidney/Pancreas	2,356
Liver	16,855
Intestine	231
Heart	2,778
Lung	2,756
Heart/Lung	124
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - February 2007
Total	4,424
Deceased Donor	3,414
Living Donor	1,010
Based on OPTN data as of 05/04/2007

Donors recovered January - February 2007
Total	2,274
Deceased Donor	1,266
Living Donor	1,008
Based on OPTN data as of 05/04/2007

Quote Of The Day

2007-05-08T17:39:00.001-04:00

"I kept leaning down to smell the top of your head, so thrilled that I was home." - Heather "Dooce" Armstrong

Dream job

2007-05-04T17:21:00.000-04:00

1) Independently wealthy.

2) Work part time for a couple of corporations as the representative on the boards of non profit organizations that receive the donations from the corporations. Not as a meddler, just to ensure the money is being spent wisely.

You also see no differences

2007-05-04T15:44:00.000-04:00

Okay, I have away from the organ donation part of this blog it's crazy. You will have to live with it for a month or two more. Then it's back to the right stuff.

Reading the headlines today I would really like to..........

Okay, I wrote a post and re read it, then I edited it, re read it then deleted most of what I wanted to write......

Of the two articles I was going to reference one was about some group in Austria that want to declare a chimpanzee a human. The other was a 17 year old Kurdish girl being stoned for having a relationship with a boy with a different religious background.

I cannot (well I can, but I won't) say what I really want to say on this blog. It would move the content so far away from the focus of Organ Donation.

When the subject of "differences" comes up with many people I deal with, I ask them to close their eyes and tell me what they see that is different. Not what they remember, but what they can actually see with their eyes closed.

The usual response is "I see nothing". Then my answer is "then you also see no differences".

From behind the lens

2007-05-01T18:05:00.000-04:00

On another note, I have mentioned him in the past, but David Farmerie has been preparing a re design of his own site. He has added podcasts and a blog and there should be some more images pretty soon. His web site blog is here http://davidfarmerie.com/txp and the web site is here http://www.davidfarmerie.com

I was reading his newest blog http://photographersplace.blogspot.com recently with this entry:

What Moves You?

This is the question that I would ask of any image maker wanting to know what genre of photography to explore. It is also the question that I would pose to any image maker asking how to go about choosing a personal project.

As an example, a friend of mine - who is an aspiring photographer, began shooting sports for a local newspaper but he wanted more. He took on a personal project that moved him - that he was passionate about, and created a blog and photo site. (http://causaleffect.blogspot.com/)

I actually had to read it twice because I didn't realize the paragraph was about me. I am flattered. I just need to live up to my own hype and begin producing images for the One-A-Day-2007 Organ Donation Awareness Project. Besides the many obstacles I run into, I don't have much accountability. There isn't anyone over my shoulder saying I need to fill a quota, or have a certain portion of the project done by a certain date. It's all self paced and self regulating. Which is exactly why the last 45 days have been a total bust.

I am still passionate about organ donation. I go through life right now figuratively looking through a camera lens. I watch people all day wondering what they would look like with a certain lens. I watch the shadows fall across their face. I see how the nose casts a shadow and want a Canon "L" lens that will show the smile lines on their cheeks. I even went to a second hand store to buy some interesting clothes for the time I actually get to shoot in a studio. Hats, shirts and a few skirts. I think my daughter snagged a few though.

I bought People magazines 100 most beautiful edition. When I look at the pictures, I am looking into the reflections in the eyes and trying to see if they are using a softbox or octobox, a strip light, reflector or natural lights from the sky or windows.

(Note to all: A Canon 85mm L f/1.2 or an 85mm f/1.8 would fit nicely in my mailbox....in case someone has an extra laying around).

I drive around looking at trees, signs and buildings wondering when the best light will be. I get butterflies in my stomach when I see people gathering for ice cream or sitting down for dinner. It takes all I have to not just stare, observe and want to take pictures.

David mentions the "zone" in his new blog. Last weekend I was in the zone. I got some really good soccer shots. They aren't at the level of those on SportsShooter, but some day, some day.

Timing is everything

2007-05-01T17:16:00.000-04:00

Yesterday, I was perusing a site I frequent very often. www.sportsshooter.com which has some of the worlds greatest photographers as it's members.

I delve into the main site every so often but I read the forums most. but since I am not a member of the site, I cannot participate, post or view some parts of the site......

I read a forum post from one of the members and replied via the email feature, which I can use. We struck up an email conversation that was very, very nice. We had a few things in common and it lead to a discussion about a few things including organ donation, our pasts, our futures and dreams.

The photographer is an organ donor, has a family member that received an organ, and is also struggling with someone near and dear that may be in the early or middle stages of liver disease. We talked about the difficulty dealing with someone that isn't necessarily in denial, but refuses to accept help or seek treatment.

Our conversation went in other directions too, but I was struck by the casualness of our email conversation.

I had asked her early on if she could spare some time to review some of my own images I that have made in the last year or so. Having a true professional photographer review your work is always beneficial and scary. Most photographers are pretty critical and detail oriented. We are our own worst enemies. And having a "peer" (and I use that term loosely since I am not a "true" professional (yet)) review can only benefit me as a budding professional photographer.

To view her work, head here: http://www.jodygomez.com

Making it up as I go

2007-05-01T09:57:00.000-04:00

It is May 2007 now. Last month, April, was National Donate Life Month. I saw ZERO national efforts regarding organ donation. I watch the news (NBC Brian Williams, ABC nightly news and CNN) on my iPod at least 4 of 7 days a week. In all of April, none of them had a story on organ donation. Locally, I don't watch the news since I am editing pictures at night from the previous weeks events or I am sleeping.

It is pretty disappointing to say the least. But in all fairness (because that's what I am about), I wasn't out there doing interviews or getting portraits either, so I am not pointing a finger, just making an observation.

I looked back on the numbers and unfortunately, I didn't do a good job posting last month. My post on Mar 26 shows 95,611 waiting for organs. April 10 shows 95,978 and May 1 (today) shows 96,254. There was an increase of 643 people waiting based on those numbers. Of course many have been added and dropped because they got organs or they died waiting for an organ. Out of the 36 days between Mar26 and May1, it averages just over 17 people per day being added to the list. 17.8 actually.

All of last month, I wore a Donate Life pin. It's a red heart/ribbon type of pin. I put a sticker on it with the number of people waiting for an organ. The first day I wore it, someone asked what it was. Yesterday, someone else asked. I don't remember anyone asking at any other time of the month. Very strange indeed.

Cat's out of the bag

2007-04-30T13:26:00.000-04:00

And I'm not too fond of cats. So let 'em go.

This post is to bring everyone up to current. It’s a rant, a rave and a revelation of sorts.

These past several weeks have been pretty traumatic on my psyche. I have had to withhold information from you lovely loyal readers and that put me in a predicament that caused me to slow down on so many fronts, especially the blog postings. Something I didn't exactly like doing.

This blog is my confidant. My therapist. My out, if you will. Even though its auspices are organ donation, the blog has a very grounded effect since the organ donation is exactly what has put me in this current position.

Where does the future lead?

We are in the process of looking for a new house here in Western PA. If that happens, then is will cement our roots in this area for several more years. It's not something I relish. As a matter of fact I nearly got divorced over this decision. Something I actually seriously considered. While I can live and flourish anywhere in this world, my family is the most important thing to me. My “family” is not limited to just my children and my wife. It fully includes my parents (both sets), my brothers and sister, their kids, my grandparents (all of ‘em) and my aunts, uncles and cousins. I grew up with 5, 10, 20 people at a birthday party. Thanksgiving dinners had twice that and most of the time there were so many people coming and going at Christmas we really couldn’t count. I cannot thank my parents and grandparents enough for those memories that are just so damn wonderful.

But that is exactly what put me in a position that no matter what my decision was, I would regret it.

When we moved to Pittsburgh, I thought I made it very clear that we would be here for at least five years. That would be enough time to take in the ambiance of what is Pittsburgh and beyond. At four years we would sit down and determine if our move was beneficial to us as a WHOLE family. If we have not benefited as a WHOLE family, then we would begin the process of returning home to Washington.

Apparently, only my kids, my family members and myself were the ones that remembered that four/five year timeline. My wife (and company) had forgotten about it.

I define “beneficial” as a set of standards. Whereas we have either increased our finances, gained personal wealth by experiences (more-better culture), put into a better position professionally (which should better our finances, so to speak) and/or where we as a family have become better people by living here.

In years form now and the subject comes up that we lived in (near) Pittsburgh, they will invariably ask what you did there. Well, up to now, not much. I have been to the hospitals more that anything else. I have seen one pro baseball game. No hockey or football. I have seen a couple fireworks shows, but now they are old hat. We have been to a few museums and my daughter got to see River Dance at the opera theater. We have been to Erie once and Niagara Falls once. This summer we head to Philadelphia for a weekend. That’s it. For fours years in this area and I can summarize it in a couple of sentences, I say it’s a bust.

The above may expose our limited experiences, to be totally fair, we have benefited.

I have put myself into positions where I volunteer for one of the local youth sports associations. That is something that really is one of my great joys every week in the spring and fall. I have also been able to pick up a camera again and re discover my love for still photography. (I would have most likely picked up a camera anywhere, it just happens to be here so that’s an indirect benefit). I also got involved with an organization to bring about revitalization to the small town I currently live in. My wife has been promoted which really was the reason we moved in the first place. She contends that she can’t “just transfer” to any other location within her company. I agree, it would take time to do that, but we did it once, we can do it again. Another benefit that is most obvious is the recipient has received a liver resulting in a new lease on life. The recipients spouse loves living here too. Enjoys the slower lifestyle and small quiet comforts of the village they live in.

What have we lost?

My kids….well they haven’t directly benefited by being here. Indirectly, yes. But they are also losing so much that just cannot be replaced. Regular time with extended family just cannot be replaced with a few weeks once a year or in our case every four years.

What’s the big deal? Well, my kids are growing up with only two of their dozens or more family members. The two that they regularly interact with really can’t (or won’t) do anything with them. One is more of a homebody and the other has health issue that must be taken into consideration. It’s NOT a slam. It’s the reality of our situation. There are so many family members we left back home, that are very active in life that our kids are just plain missing out on it truly pains me to be in this situation.

Staying here in Western PA will result in my kids not knowing any of their cousins or their grandparents and having great memories like I do, I still have two grandparents (with one remarried) that are alive. My mom and dad have both remarried (YEARS ago) and I have siblings with both of them that have kids. I also have numerous cousins from aunts and uncles that have kids that are similar in age to my kids. All-for-naught.

Right now I feel they are in the golden hours of their lives. Over the next 3-4 years, they will create memories that will stay with them for the rest of their lives. I want those memories to include family. The whole family. Once they hit high school, it’s all about their peers and their classmates. The majority of their time will be spent away from mom and dad and they will be fast approaching full independence. Even if we move back in three years (my next milestone) they will have missed out on the ability to make close relationships and great memories with my parents, (their grandparents) their cousins and other family members.

By my decisions, I will have taken away opportunities of precious memories from my parents as well. That is something that is very, very difficult to accept.

So why are we still here? Well, it’s economics my dear Watson. Economics.

The recipient of course underwent a liver transplant recently. The medical coverage is provided by the hospital that performed the procedure. If the recipient leaves the area, then the medical coverage will cease to exist. Since none of use makes seven figures a year, we are sort of stuck here. The ~~state~~ Commonwealth of PA uses proceeds from the lottery system to supplement the seniors that reside here. Many states use the lottery for education; PA uses a lot of it for seniors. It’s a system that works very, very well.

I requested the medical info from the recipient so I could contact the State of Washington to compare medical coverage. But the recipient and spouse ~~wouldn’t~~ have not provided that info for me. I think they know that if I can find a good argument against staying here, we will then begin moving back to the (great) State of WA. By not providing that info to me, it ensures we stay here. That’s leverage. I’m impressed.

I tried a difficult stand on a compromise, that wasn’t taken very well. Perhaps it was the blindsided approach that caused it to fail right from the beginning. But sometime, that approach works best. This time, it didn’t. I offered (?) to move back to WA with the kids for a couple of years. My wife could stay here with the recipient and spouse. In a few years, we would reevaluate the situation.

It was met with incredible hostility.

Even though my wife left WA to come to PA for her job, me leaving to go back to WA with the kids was not met with the same enthusiasm. It must be different.

It wasn’t meant to be an “end all”. It was designed to be a safe stop gap of “the grass is greener” situation. If it didn’t work out for us in WA, there was some place to come back to in PA. If things in PA changed, or the insurance in WA got better for the recipient, then those in PA could head to WA.

Again, it wasn’t received well at all. At that point, I had to give up the battle. I knew I would lose everything I was working for if I continued. I put on my “happy face” and went on with the charade.

My wife has made it her number one goal to ensure the best quality of life for the recipient and spouse their last years on this earth. I DON’T HAVE A PROBLEM WITH THAT. But our sole focus on them has caused the rest of our families (hers and mine) to figuratively be lost to the wayside. They have essentially become an after thought.

We have effectively been the sole providers to them for the last 6-8 years. I must admit, it’s been challenging but also rewarding. There are few people on this earth that can do what I do. It has caused some consternation and yet has given hope to others. Never the same people though.

I have rarely been the one to say “if we can save just one” it’s all worth it. I am usually the person to reach out to the masses. I don’t have a problem sacrificing one for the majority. It’s a bitter pill to swallow in my ability [sic] to self sacrifice. I have given so much up for the benefit of others my whole life….I am realizing now, that I need to begin to take care of myself, to take hold of my own dreams before they are lost to the ether forever.

I just do not know how rocky that path will be.

Back, but for how long

2007-04-25T11:36:00.000-04:00

Okay, these past several weeks are excruciatingly thin on updates. It' s by design and by accident.
I am going to side step Organ Donation for a bit and fill you all in on some things going on.

1) The bacteria referred to in a past post is treatable, but at a cost. The medication will destroy...well damage, the liver. Since the doctor (?) that diagnosed the bacterial issue, isn't in contact with the doctor/surgeon that has performed the liver transplant they just issued a medication that could potentially kill the recipient. Nice huh.

2) I personally have some changes currently going on. Some can't be detailed until they are done.

3) I am trying sort of hard, to find a new job. Hopefully I can be a professional photographer, but it will take a few more years of work before I get to that point in my life. With that in mind, read this web page and the top 100 things about a photographers job. You may understand why I want to pursue that as a profession. http://www.sportsshooter.com/news/1748

Quote Of The Day

2007-04-20T10:47:00.000-04:00

“My response is, Lighten up and get a life.” - Senator John McCain to reporters after a parody of a Beach Boys song

Where to draw the line

2007-04-19T15:28:00.000-04:00

Since the beginning of this blog, I have skirted the line of personal versus private. For the very close readers, and a select few others, there is no blurring of the line. You know the players, their stories. For the other outside/casual readers or those that stumble upon this blog, it doesn't take a rocket scientist to figure everything out.

The recipient underwent another test last week. Two actually. One was the MRI to attempt to determine the cause of the issues in he fingers of the left hand. The other test was for a bacteria, that is communicable.

He was, how did they say it, exposed and possibly at risk. I won't quote those words, but that's how I remember the conversation. We...he, hasn't received any word back on the tests either. Well, I haven't heard, if he has heard.

I am at odds with divulging the particular bacteria. It's not one of those front page stories. Most of the front page sicknesses are all viruses. Like Ebola, HIV, Bird Flu etc. No, this is a few notches below. But concerning nonetheless given the current circumstances.

So until I get an approval from the recipient, I will toe the line.

Quote Of The Day

2007-04-13T13:19:00.000-04:00

"Well, any General Officer who’s any good won’t take the job, and any General Officer who’ll take the job won’t be any good." - Col. Jack Jacobs (Army ret.) on the White House recruiting for a "War Czar"

A New High...or a low

2007-04-13T12:24:00.000-04:00

The United States went over 96 THOUSAND people waiting for organs today.

Waiting list candidates as of today 12:17pm
All	96,003
Kidney	71,120
Pancreas	1,728
Kidney/Pancreas	2,364
Liver	16,912
Intestine	234
Heart	2,781
Lung	2,808
Heart/Lung	125
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - January 2007
Total	2,268
Deceased Donor	1,724
Living Donor	544
Based on OPTN data as of 04/06/2007

Donors recovered January - January 2007
Total	1,191
Deceased Donor	648
Living Donor	543
Based on OPTN data as of 04/06/2007

Project Progress

2007-04-12T16:34:00.000-04:00

Now that we are done with Q1 of 2007, I have begun work on the book portion of the One-A-Day-2007 Organ Donation Awareness project.

But before I get to that, let's take a stroll down memory lane.

Summer of 2006.
The recipient was sick and went through a battery of tests. Over several months the conclusion was his liver was failing. After the requisite tests, he received a MELD score of 8.

Fall of 2006.
I was asked that if my blood matched, would I donate a portion of my liver. I answered YES.

Since I thought I was going to go through the process of donating my liver, I tried to line up a documentary team to follow me through this journey. Living near Pittsburgh PA, I contacted the biggest newspaper here and was not met with much enthusiasm. I also contacted a few other media (two Pulitzer winners, a TV personality I graduated with and a photographer from my home town). I even asked relatives living in areas that might have connections. No one was willing or able to help. Including the hospital. It was up to me from this point on.

My journey, my view.

November 2006.
I went through the tests to see if I was a match. I was not and am diagnosed with a fatty liver. I was also incorrectly diagnosed with a blood disorder that has been subsequently ruled out.

January 1, 2007
With little to no support from anyone else, I began a blog to document everything that is going on in the recipients life, health and general items about organ donation. I met several people on other blogs, but mine is probably tied with first as the most active.

February 19, 2007
The recipient got a call 4 days before his birthday saying they might have a liver. The slow rush to the hospital was on.

February 20, 2007
Early in the morning after a 7 hour surgery, he received a liver from an 85 year old doctor from New York. After several weeks in the hospital, he comes home.

The recipient now:
He has gained weight, increased stamina, more energy and FEELS BETTER.

One-A-Day-2007:
With the blog, I have a parallel project that involves my photography. I have a photo project on Flickr.com. The project has become dismal and an embarrassment to me. I started out with 15 portraits in about 35 days. February and March sucked. Overall I only have 18 portraits, technically 16 since one is of me and another is a double portrait.
I can honestly say the portraits are secondary to the message of organ donation awareness. I have talked to more people than I can count. Normally I talk to 2-4 people a week about organ donation. Most of the simple, short stories are on the blog. But as a photographer, I try really hard to get pictures to lend a face to those stories.

Where I am now:
Now that we are current, I have begun the process of taking all the images (all 18 of them) and the stories from the blog to create the first portion of the book. Without boring you to more tears, I have 226 pages in the current document. It's gong to take some editing to get it readable. I will also begin putting the posts directly onto a document rather than relying on an export process. Which DOESN'T EXIST on Blogger. (Those are the details I will omit for now).

Quote Of The Day

2007-04-12T10:21:00.000-04:00

“I will say anything to be funny, often in the most horrible situations,” - Kurt Vonnegut

Med Update

2007-04-11T10:27:00.000-04:00

It's been a while since a med update and this one will be pretty sparse.

The recipient is still having problems with the three fingers of his left hand. There is little or no movement and they are always swollen. Because of the damage, he went in for an MRI Monday 4/9/07. The results are supposed to be back on Friday 4/13/07. So while I don't have a prognosis on that issue, it is, nonetheless, an update.

As for the rest of him, he is getting stronger every day. Little or no pain. His legs used to be really restless at night and has suffered from "charlie horses" for YEARS. It is my understanding, that all that has gone away or been so reduced in frequency that they are non issues now.

He does have sore knees in the morning, but it's most likely from the way he sleeps at night. He has also been gaining weight which means he is absorbing the nutrients from the food he eats and that means the liver is producing enzymes and functioning properly.

Yeayyyy.

April is National Donate Life Month

2007-04-10T11:15:00.000-04:00

This morning at 9:00am I saw on the http://www.optn.org/data web site, there were 95,978 people waiting for an organ.

I received some lapel pins from OrganDonor.gov yesterday too. I am wearing my pin for the rest of April. (I never did get anything from the other organization that offered).

You too can get a pin from here: US Dept of Health and Human Services

I modified my pin with a label that has the current number of people waiting for an organ. Mine says 95,971 (from 10:00 am 4/10/07).

MIA

2007-04-04T17:20:00.000-04:00

I took a week off. First, I was just purely busy. We had several things going on at work and our youth soccer league was having its season kickoff on Saturday 3/31. Then there wasn’t a whole lot of news regarding the recipient so I really didn’t have much to post or the time to do it.

What has changed?

Not much.

But some news is that the recipient was able to get his PA drivers license. He went in the week before is birthday and the state office was on a multi day holiday. There was a sign on the door saying something to the effect of Monday being a holiday so we will take half of Thursday off and throw Friday in there too. For those of you wanting to come Saturday, we decided to take that day off as well.

PA ~~State~~ Commonwealth employees, sheesh.

While it’s significantly more important than my laziness, April is National Donate Life Month. A little more than a week ago, I was gearing up for this month, trying to get some momentum going for April. (The month, not the person). So I emailed one of the local organizations that work directly with organ donation. I have had emails in the past with them and thought I would begin another dialogue. Well, I got the cold shoulder. I had asked what was being done to push the message of organ donation this month and (me, being “me”) I questioned a fact on their web site.

Maybe my questioning the accuracy of their site was what got me blackballed. I was at least hoping for a “here’s a list of our events” reply. Nope. They were suppose to send me some trinkets so I could use them to give to people I was talking to during the course of my own organ donation awareness project. Perhaps they see my lack of results and decided I wasn’t worthy of their trinkets.

Whatever. I feel that I am unworthy too. That’s a pretty crappy way to come to an agreement.

It’s kind of funny. Some of the people I have talked to about organ donation and one that is actually in the project, never come to the site. Hmm.

MSNBC has a good article about the current state of national organ donation.

I sent a letter, a real paper letter, to the White House last week, attention to Press Secretary Tony Snow. I am sure it will be piled with the other 3,000 fan letters he gets. But I wished him well in his current battle with cancer and I also challenged him to use this as a platform for organ donation. Why him? Why not! His cancer has spread to his liver and I thought I could use that as a lead in. While I would never expect a call or reply from Mr. Snow, I have always been one to leave a glimmer, a thread, a distant light, of hope available.

Quote Of The Day

2007-04-04T13:33:00.000-04:00

"Easily amused people are always happy. Even if they are lost in the brightly colored sock aisle at walmart." - S. Beckwith

Learning every day

2007-03-28T12:04:00.000-04:00

Here in Western PA the streams look dead. No fish, no greens. Nothing. It's so sad compared to the clean rivers of Washington. Well, except the Yakima. That one is a bit muddy in teh Columbia Basin area.

Anyway.....I found this description that helps clarify why the streams in this area are what they are. I acquired this info from SwampWalker14 a GeoCacher.

"This cache is located at an active Acid Mine Drainage treatment system called JB2. You are probably wondering what Acid Mine Drainage is. Acid Mine Drainage (or AMD) is contaminated water runoff from old coal mines, either strip mines or underground mines. When a mine is abandoned, water collects and floods the mine. When the coal-bearing rock is exposed to air and water, the oxidation of metal sulfides, often pyrite, within the surrounding rock creates acidity. The AMD, or mine water, is high in acidity and dissolved metals like iron and aluminum. The metals stay dissolved in the AMD water until the pH rises to a level where precipitation can occur. This makes AMD water look like a red, orange, or even a yellowish color. If the AMD contains lots of dissolved aluminum, the water will look pale blue like spilled milk. AMD is a big problem in western Pennsylvania because it smothers the tiny creatures called macroinvertebrates that fish need to live. AMD spoils people's drinking water, stains everything it touches and smells like rotten eggs. AMD pollution can kill all the life in a stream.
The JB2 Treatment System treats AMD flowing into Raccoon Creek from an old underground mine. This treatment system works by settling out (or precipitating) the AMD water in a large, shallow basin filled with high pH limestone. The shallow basin exposes the AMD to air. The air makes the dissolved iron settle out onto the limestone bottom. The limestone raises the pH and reduces the acidity of the water. This filters most of the iron out of the water. Next it flows over a dam where more air mixes through the water, and into a bed of larger limestone. This cleans the water even more. Then the water passes under Joffre-Cherry Valley Road to another settling pond where even more iron drops out. The JB2 Treatment System removes over 15 tons of iron, 2 tons of aluminum, and 105 tons of acidity from Raccoon Creek every year.
This cache is off of Joffre Cherry Valley Road. The treatment system is on both sides of the road. There is a gravel parking lot you can use. There are no trespassing signs on the wooden fences surrounding the ponds. But I have land owner permission to place the geocache here. If you would like to look at the ponds please stay on the outside of the fence. This is a simple cache to find. I hope this will teach you a little about the problem with Acid Mine Drainage. There are brochures in the cache about the Raccoon Creek Watershed Association and the Independence Conservancy. These are volunteer organizations whose members working hard to clean up Raccoon Creek."

1st Transplantiversary

2007-03-27T18:07:00.000-04:00

Josh http://joshcarpenter.blogspot.com celebrated his own 1st transplantiversary on the 26th.Read his account of how it went.

Data correction

2007-03-27T13:22:00.000-04:00

I posted on Thursday March 15, 2007 that a person dies every 17 minutes waiting for an organ.

That was wrong.

The current national average is 17 die every DAY. Not one every 17 minutes.

What's the difference?

Well, 17 per day equals 6,205 per year. (The number used varies from 15 to 18, with most using 17 per day).

One every 17 minutes would equal 30,917 per year. (Given 60 minutes to an hour, 1440 per day, 525,600 minutes per year).

No one corrected me on this error. I caught it myself. So that means that:
1) No one actually looks at the info I post.
2) The info I post is easily accepted as fact because I am a damn intelligent and very honest person.
3) The dismal web hits I am actually counting are bots and don't know data from errata.
4) I am the only one actually reading the details of this blog.
5) All of the above.

Numbers for the week

2007-03-26T17:15:00.000-04:00

I watched the numbers on OPTN go from 95, 599 most of the day to 95,611 between 5:00pm and 5:12pm. It was kind of weird.

April is Organ Donation month.

I emailed a contact from a local organization that is "one of 58 federally designated not-for-profit organ procurement organizations (OPO) in the United States". I had heard from one of the representatives well over a month ago and they had offered to send me some trinkets that I could use to give to the subjects of my interviews and for my project. Even after two follow up emails, I haven't received anything. While the trinkets are not that important, I was just really excited that at one point, the potential for recognition and the very real possibility of legitimacy was just over the horizon for the One-A-Day-2007 project.

Unfortunately it's just one of the few things that have failed to materialize lately. I was also to have been invited to a staff meeting for a similar purpose, but since there hasn't been any follow ups from that organizations, it too will fall to the side.

I would like to think that everyone is gearing up for April and the organ donation month. But I seriously doubt it.

A return to lucidity

2007-03-26T13:58:00.000-04:00

We went shopping this weekend for the birthday of a current visitor. The recipient was dragged along to the mall and I was actually able to talk and ask a few questions. Since most of the conversation was just conversation, I don't remember a lot of the details of what was said. Then again, I had a specific question I wanted to ask and the rest was more or less verbal fodder.

I wanted to know if he was happy that he made the decision to go ahead with the transplant. His response was "yes". The reality was that it happened to him very fast. A phone call, then admittance to the hospital and hours later up on the guerney to the operating room.

He did say he doesn't remember anything (or at the most, very little) from the time he went to the operating room until he went to the 12th floor. That was several days after the surgery. Even though we all had short conversations with him, he doesn't remember any of it. From the time he arrived on the 12th [floor], then memories come back to him but covered in some haze. After he had been there a few days, it becomes more clear until his move to physical therapy. Then it's business as usual since he's been home.

Right now, there is some major fluid retention in his left hand. The same hand (and three fingers) that has been affected by the damaged nerve during a operating room procedure. His legs and feet swell quite a bit too. But even though those are obvious issues, he says he feels better every day. We just need to figure out why the swelling is happening and how to prevent it and to make sure it doesn't turn worse.

Quote Of The Day

2007-03-23T12:42:00.000-04:00

"Reading quizzes were easy. Finding a socially acceptable table in the cafeteria was hard. Make a game show about that." - Mary Beth Ellis In an article about the show "Are you smarter than a fifth grader" on MSNBC.com

I have been wrong before

2007-03-21T09:47:00.000-04:00

No one likes to be wrong. Few admit it when it happens. I am one of those few.

When the recipient was undergoing the transplant, two family members came to visit and help. I kept saying that we will need the help more after the surgery and when the recipient goes home.

So here we are, a month post surgery and I can say "I was wrong".

He is doing very well from the accounts I have heard. There is a nurse that comes weekly to check on things and there also a next door neighbor with a medical background. The biggest issue is still blood sugars/insulin and the fingers of the left hand. Once those are in check, then I think things can go much better.

Med updates

2007-03-19T18:23:00.000-04:00

It sounds like the recipient is doing so well the doctors said to come in once a week for tests. It started out on Monday and Friday every week but now it's only Friday. The biggest hurdle to overcome now is the diabetes and working on the occupational therapy exercises to regain the movement in the fingers of the left hand.

I don't have details, but I will try to get some this week.

A new high

2007-03-16T16:45:00.000-04:00

It looks like the U.S. hit a new high today regarding the number of people waiting for organs. With that in mind, April is National Donate Life month. I have a permalink on the right nav bar.

Waiting list candidates as of today 4:45pm
All	95,502
Kidney	70,545
Pancreas	1,745
Kidney/Pancreas	2,373
Liver	16,944
Intestine	232
Heart	2,819
Lung	2,820
Heart/Lung	124
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - December 2006
Total	28,926
Deceased Donor	22,200
Living Donor	6,726
Based on OPTN data as of 03/09/2007

Donors recovered January - December 2006
Total	14,748
Deceased Donor	8,022
Living Donor	6,726
Based on OPTN data as of 03/09/2007

You can't get to heaven in an armored car

2007-03-16T16:30:00.000-04:00

On the iPod:
Direct Current was the band and "I Believe" was their CD. They were a Christian band from the early 90's and are no longer performing together, but I listen to their only CD often. Right now, the song "Show me the way" is playing. My favorites are "I Believe" and "It is finished" which has great message and absolutely incredible vocals. It gives me chills when I listen to it. I know each of them personally, but only keep in touch with one of them, the lead singer.

"....he chose to forgive..." "....He spoke His final words....it is finished....."

Close but no cigar

2007-03-16T15:41:00.000-04:00

Over the week in NC talked to several people about organ donation. Nearly all of them were literally seconds or just a few minutes. I handed out a few cards and in a few circumstances, I was able to actually hold a conversation with someone.

The young woman at the Philly airport didn't transpire. I was at the airport, but my flight from RDU was late getting there and we were of course late leaving. Thus, late getting to Philly. I was at the PHI airport, terminal "D". Except the I arrived there just after 5:00pm so she may have left by then. I looked down to where we met on Monday, I didn't see the kiosk/table she was at. So I just got into line for my flight back to PIT.

That flight was late too.....then once we got on board, the pilot said the plane had to be powered fully down and according to the FAA passengers cannot be on board when that happens. For me, it's all good. For others, it was ALL bad. No one really had a cow.

When we re boarded about 20 minutes later, the younger/high school passengers too it upon them to try and sit in the "first class" row. But this airline doesn't have a first class. Me...I walked straight to the LAST row, window seat.

During the time we were waiting to takeoff and the other passengers to board, I struck up a conversation with others around me.

((My dilemma: I want to be accurate without divulging the careers of these people))

We talked and discussed organ donation and who in my life had received a liver recently. They allowed me to take pictures but had to recant after a short conversation. We did have a good talk and although the loss of the images was a personal disappointment, the overall goal of the Organ Donation Awareness project is AWARENESS. The portraits are secondary.

Med updates

2007-03-16T15:32:00.000-04:00

I have been remiss in my updates for the recipient.

He was released from the UPMC system last week, Friday 3/9/07 (I hope that's the right date). He was home over the weekend and went back for some blood tests Mon 3/12/07. The results of those tests allowed him to stop taking a few medications. His blood (diabetes) is out of whack so he must test his blood often. Prior to the surgery and new liver, he was able to control it with his eating habits, if you can call it control....LOL

This morning my daughter updated me with her version of his health and well being, "he's doing awesome!" she told me.

Today he had another checkup and it resulted in a few more medications being removed from his daily regimen. The fewer the better right?

As of last night, the only leaking he had was from the incision under his arm. I don't have an update regarding the three fingers on his left hand. So I will assume they are better but not 100%.

Punxatawny Phil ought to be skinned

2007-03-16T13:08:00.001-04:00

He was dead wrong for us in his own "hood".

Here is our forecast:
Allegheny County

SNOW ADVISORY…

Today: Snow showers with the potential for 2 to 4 inches in most regions with higher totals in the Laurel Highlands and near I-80. High 35. Wind NE 10-20 mph.

Tonight: Chance of snow with up to an inch possible. Low 23. Wind N/NW 5-15 mph.

St. Patrick’s Day: Mostly cloudy and with a chance of snow. Little additional accumulation. High 35. Wind NW 10-20 mph.

Saturday night: A chance of flurries. Low 20.

Punxatawny Phil ought to be skinned

2007-03-16T13:05:00.000-04:00

He was dead wrong for us in his own "hood".

Here is our forecast:
Allegheny County

Up against the window

2007-03-15T14:27:00.000-04:00

Up against the window, I have a good view of people in the A terminal. To my left, is a young man, perhaps in his early 20’s reading a book. Across from me is an Asian couple sharing a DVD on a laptop. The man is much more entertained by the movie then his companion. He regularly jumps and giggles to himself as the scenes change. She….is…. unmoved. Slightly in front and to my left is another couple. They are Caucasian. She with a brown open crochet type covering on. Not quite a sweater, but not a doily. It’s dark brown and matches her leather sandals quite nicely. He in tennis shoes like most of the men in the terminal. Next to them a few empty seats down is a trio of men. One looks to be the “leader”. I see him as a former football player with not enough talent but plenty of enthusiasm. His hair is short and graying. He wears a checkered yellow shirt tucked smartly into his khaki Dockers. He probably coaches his son’s baseball team now. He can’t sit for long always getting up and checking the sports scores.

When I follow someone with my eyes, watching them for any clue to their current situation. Is it business or pleasure? I can only imagine where they have been. What they are doing and where they are going.

The reality of my fear is truly unfounded. While I may have had a few people turn me down for a picture. Nearly everyone will listen to me for a few seconds to several minutes of my chatter about organ donation. No one has any idea about the number of people that are waiting for an organ. They don’t consider that one person will die every 17 minutes waiting for an organ. One that will not arrive. I don’t know what caused the death of the patient the first day the recipient was in ICU. It could have been a sickness, accident or natural causes. I remember seeing the distress on their faces. I could almost feel it.

DATA CORRECTION [I erroneously posted that "one person dies every 17 minutes". The actual accepted number is "17 people die every day".]
What's the difference? At 17 per day = 6,205 deaths. If it were one every 17 minutes, there would be 30, 917 per year.

All around me wandering in and out of empty blue vinyl seats are people coming or going. There are so many stories that are waiting to be told. A few months ago, I would have called it a “target rich” environment. But now, I am leery to approach a subject in an airport. Mostly because of no way to easily escape. At the mall, I can head out a door to the parking lot. In a book store, I can duck into another aisle filled with fiction or Harlequin books. In the airport. Not so easy to disappear.

To my right is a younger woman with a large diamond wedding ring. It looks to be a princess cut set in white gold. Simple design but pretty nice. It still shines so she probably hasn’t been married too long.

In most public places, people tend to put barriers between themselves and others. Separating us from “them”. Normally it’s distance. In an airport, it’s seats. On my left is the young man two empty seats (one with my camera and laptop bog on it) then myself. To my right are two more seats and the young woman. She too, has a bag on one of the two seats. So between the three of us there are seven seats with 5 taken up. Psychologically, no one will sit in between us. There really is only one seat. Sure, we can move our bags, but we won’t. They are our barriers. The protective cocoon we put up.

To the young woman’s right are two college age guys. They are sitting in the two seats immediately next to her. I can see her discomfort. She ahs made “innocent” glances their way to see if she approves of their proximity. Getting up and moving to another seat would be rude. Something that’s probably not acceptable here in the south. But yet, these two young men got up and moved to the area the trio was occupying. Now the woman is alone in her small space. When two of the trio return, there will be a dilemma. Sit next to other “men” or remain standing and wait for another set of seats to open.

The “leader“of the trio has returned. He’s standing now. One of his colleagues has his own bags on one of the seats and if he were to sit next to it, he would violate the “man law” of sitting too close.

Being up against the window is entertaining to say the least.

Thing I have learned

2007-03-14T20:19:00.000-04:00

You can wash your hair with hand soap. But toothpaste leaves you smelling minty fresh.
Clean glasses in a hotel room, might not be.
One persons dump is someone's sanctuary.
Never eat at a chain restaurant, unless somone else is buying.
Drive around at night when there is less traffic and you can see the store signs.
Share what you know about the area with somone else.

Words to live by

2007-03-13T14:58:00.000-04:00

Josh is one of the recipients I keep in touch with. He is just shy of his 1 year Transplantiversary. He spoke at an Atlanta hospital for parents that have children waiting for an organ. Here is some of what he told me:

The Q&A was awesome. It was a ton of fun. It was a very informal meeting which had me and another transplant recipient sitting at the head of a table and fielding some rapid fire questions from parents. I found it pretty exciting because you didn't really have time to "think" about your answers. It was very honest, up front, and occasionally funny because of some of the answers. I think that the parents were relieved to see that their children still had the potential to be productive citizens and live a normal (what is that anyways?) life.

Many of the parents of these children are scared about relationships with others as well as how much activity their children can handle. Most of the questions centered around relationships, exercise, and getting a job. I am sure that as a parent those are some of the top things you want to be good in your child's life so I was kind of expecting those type questions. I think some of the parent's fears were calmed.

I was invited back this summer to do sort of the same thing with a group of 15-20 year old recipients and those waiting. I am excited about that as well.

I also talked to him about the article that was blogged about last week. He does have a cap but wasn't all too worried about it right now. The state he lives in also has a program for organ recipients. Not all states have these programs and most likely, aren't all that advertised.

A word from our sponsor

2007-03-13T14:47:00.000-04:00

Not really, but I did get in touch with one of my "links" there in the right column. Ed has been living on the MELD/donation list for a few years. He has some really good insight that I have below.

FYI...regarding the "waiting period" I'm facing, it has to do with the
condition that brought on the liver damage in the first place. Essentially,
the bile ducts from the liver to the intestines were blocked for 10 years or
more, slowly killing the liver (very slowly, thus I had no symptoms as it
happened). Now that the docs have opened the ducts and have me on meds to
help regulate things (and I'm off alcohol, tylenol, and other things that
the liver doesn't really care for), things have stabilized.

The reason for waiting, beyond just the MELD score issue (I'm currently
hovering around 14), is that when the surgeons in Miami look at both overall
quality of life and total length of life, to do the surgery now might
decrease the quality (due to the drugs I'll be on afterward), but more
importantly they probably would be decreasing my total length of life. But
if we wait another 10 years, and then do the surgery, the amount of time I
gain "on the other side" would be greater than if I didn't do anything.

And then I don't know if you're a religious person or not, but I am, and
I've got a large group of people praying for a "miraculous recovery," with
the possibility that I'll never go through the surgery at all. And going
from "you'll need a transplant in 6 months" to "let's wait 5 to 10 years"
feels like a step in that direction.

[....] In the end, though, you're right...we need more donors. Period. I know too many people who need the surgery asap, and none of them deserve to wait any more than they already
have.

Thanks for your interest in this topic, and all your work!

The really interesting part is his diagnosis and prognosis. He had been given 6 months at first. Then through medicine and prayer, the doctors have suggested he wait for 5 to 10 years. How's that for amazing?

Zoom zoom zoom

2007-03-13T14:34:00.000-04:00

I am driving a VW Passat this week.

Out of all the cars I have driven on my travels these past two and a half years, this ranks second. The reason it isn't first, isn't all too clear. But lets review the VW:

It's sporty. I had lots of head room. (A small little thing that matters to me).Few blind spots if any. I can see next to me and behind me easily when doing a head check. The gauges are nice red and electric blue. Very cool at night. The acceleration is very very nice. Not so much for the gas guage, but great for ACCELERATING AND MERGING into existing traffic. Something W-PA drivers could learn!

The seats are leather in my model and could use a little more depth. You slide a bit and I haven't been driving crazy. Maybe it's the teflon pants I am wearing. They are all the rage now.

I haven't listened to the radio or CD, but it has an AUX input so I could listen to my iPod. I would assume it will sound nice. By the way. The car is quiet. Except when accelerating and you can hear the motor winding up. The accelerator pedal feels like it's in three stages. First is slow idle like creeping up in traffic at a stop light. The second is on acceleration. It gets real stiff then BREAKS free. The car surges at about 20 mph. That's probably the one thing I don't like about the car. It needs a S M O O T H E gas pedal. It can be stiff or soft. But needs to be smoothe.

What was my first choice? The Cadillac CTS. It the more sporty of the TS series. I think....I have driven the DTS, the B I G New Jersey/New York "family" style of cars. I felt way too small. Or the car ws WAY too big. I couldn't even fit my arms on the arm rests. But the CTS was a little smaller. At least it felt that way to me. I am sure I could have my models mixed up. Sorry 'bout 'dat.

So, VW or Caddy....since I can't afford either it really doesn't matter.

Philly

2007-03-12T16:56:00.000-04:00

I was heading to Raleigh/Durham NC for the week and I had a flight change so we stopped in Philly. With about an hour before boarding, I decided to walk around the concourse for a bit before taking my place in line to board my Southwest flight. I have to say, my flight form PIT to PHI was a little bumpy, but the plane was nice. It was comfortable and not very full. I think this is my first experience on a SWA flight so it was a good first impression. If this was the typical experience for SWA, I might make them a larger portion of my air options for travel.

Back to Philly.

I walked down concourse D with no real direction to go. Well, left or right is all I can choose from so I choose left. I actually wanted a smoothie, but alas, there were none to be found.

Towards the end of the concourse, there was an Air Tran kiosk/table set up with two young women running the show. As people approached, they did a great job of trying to pull in various travelers to slow or stop to hear their spiel. As the man in front of me was targeted, he mumbled something I couldn’t hear, but the young lady at the booth noticed me looking at her with a big smile. (I was smiling and she was smiling).

A-HA!

Since I made the cardinal sin of eye contact in the course of a sales pitch, she said “I see you laughing” My reply was “I’m smiling, not laughing”….

I didn’t hear her own retort but it was very pleasant. I kept walking a short distance more then came to the end of my proverbial road. No smoothies there either.

As I returned back, I knew I had to go through the gauntlet. She was looking at passengers coming from her left. I was approaching from her right. By the time she turned, I was already within a few feet.

“You came back?” She squealed.

“Of course”. I went on to say she had a difficult job….and she interrupted (nicely) that “why is it so hard?” “I get to talk to lots of people, I hear where they are coming from and going to”

We went on to talk a little more about her perception which was all positive. As we spoke, I looked in to her brown eyes and couldn't help but think that she would be so much fun to be around.

Finding an opportunity, I mentioned that I too have to approach strangers, asking them about their organ donation status and in many cases, I ask for a picture. She happened to be an organ donor. Her reasoning was that she won’t need them (after she dies) and if they can be of some help to others, then it what should be done.

After a few minutes of talking, I tried for a photo, but she used her current hair style of pig tails as the reason of her denying my photo op. It’s okay, I told her. While I like to take pictures, it’s still about the awareness of organ donation.

I did ask that if I am coming back through Philly on Thursday, if I could perhaps seek her out for a photo? She said yes. It will be very rare opportunity that I can get a second chance for a portrait. I can say that when traveling, I never get a second chance

Quote Of The Day

2007-03-09T11:02:00.000-05:00

“They never had to worry about having enough food to eat and were never deprived growing up. They don’t have to look back and compensate for any deprivations they had.” - Bill Bartmann, author of Billionaire Secrets to Success

Good news

2007-03-08T23:32:00.000-05:00

It sounds like the recipient will be discharged from the hospital tomorrow.

Today (and possibly other days) he headed down to one of the cafeterias to eat. Anything he wanted. Oh yeah, that was nice.

He has also baked a pineapple upside down cake in the Physical Therapy kitchen. Not sure how it turned out, or if he shared it with others.

An aftereffect

2007-03-08T17:53:00.000-05:00

This was brought to my attention by a faithful reader.
http://www.msnbc.msn.com/id/17507534/site/newsweek
In a nutshell. Once you receive an organ in a transplant, you will still fight for the rest of you life OR until your insurance runs out.

Here's the dilemma. Do you get the transplant to extend your life. Will your insurance support you? And for how long? Once insurance runs out (like a lifetime cap) what next? The article uses a $13,000 per year for medicines. That's a bit more than $1,000 a month. Or the cost of a decent middle class house in the fringe of the suburbs. (Or a couch in NY City).

I have to say, I didn't think about this aspect of organ donation. Even though I am obviously advocating DONATION, someone has to be a recipient. The recipient also has a burden to bear in finances after their life has miraculously been extended or saved. How about a pediatric patient. Some little boy at the age of 3 needing a liver. For the next year, he's probably good to go. But insurance will run out, maybe it's at 13 years old. Now he's a lively teenager. He maxxed out the lifetime benefits. The parents can't find more insurance and now they can't afford to buy the medicines that will keep their son's liver from being rejected. His health worsens. He gets jaundice. The liver fails. He dies a week before he turns 14.

That was of course fictional.

Or was it?

Review no. 2 (BIG restaurant review)

2007-03-06T21:48:00.000-05:00

Dinner time! I saved all day. A bagel for breakfast and peanut M&M's for lunch. I was hitting the town for dinner.

When in Omaha, EAT MEAT! What kind? COW!

I don't remember how, but I found a place called Brother Sebastion's. The reviews were all positive, except one lady that said she got food poisoning two years ago.

The restaurant is actually in a very strange location. It's also in the end of a sort of low budget almost run down strip mall off a side street. It's definately not a location you would stumble upon. You have to know it's there to find it. It's not really even viewable from the main street.

The overall theme is a Monastary or a Mission. Very low keyed pseudo spanish style design on the outside with music you would expect to hear if you were in a monastary. On the inside, it's a cozy, segmented intimate design. Once you get into the restaurant foyer, there is a bar to the left and the hostess table to your right. Behind that is a glass enclosed wine room. Filled with cubes of wine from floor to ceiling. It's very dark inside, especially if you have come in from a bright day. It only take 10 or so minutes and your eyes will adjust, but at first it's almost a detriment.

I asked if I was dressed appropriately and the hostesses joked to each other (and myself) if they should let me in. They did and I thanked them for it. :)

The reason I asked is because the web site says "smart casual". I was dressed in tan colored jeans and a button down collared shirt. As I walked through, others were dressed from blue jeans to suits. (I didn't wear my hat though).

They walked me around the the wine room down a hallway. On either side you could see the outlines of doorways that were rooms. These rooms were the dining areas. One door to the right was a smallish room that had the salad bar. One room on the left had intimate booths with black leather buttoned bench seats that would fit four to a table. Each booth was seperate from the others by walls of red brick from the tops of the booth to the exposed wood beams in the ceiling. The only lights are the very low main lights, an over head stylish period light and a table top candle. The smller rooms only had six boths to a room. Like I said, very intimate. In a few of the rooms were gas fireplaces with very large flumes. This added physical warmth as well as ambiance. But it also made the booths even that much more intimate. So much that one could get a little risque with a significant other and possibly not be seen.......

Even though I didn't get a tour of the place. I could see another area that had a table for 6 to 8 and possibly 10 diners. In that same room was at least one table for two and possibly two tables for two along the wall. The walls were like I said, adorned with red brick in some of the areas. The medium sized area had the ends of stacked wine barrels so it looked like a winery barrel room. It was, very cool indeed.

Most of the wait staff wears maroon robes similar to what a monk might wear. (No hoods or rope belts, I am sure OSHA had to have their say in the uniform).

Another area across from the room I was in was larger and could possibly seat 20+ people in a few large tables. I didn't get a good look at it, but it sounded like a large crowd was already there. Another room had one wall as one of the other wine rooms. It too was stocked with wines floor to ceiling in cubes.

Now to the menu. It wasn't so full that you couldn't make a choice. Typical fare of red meat, fish, chicken and some pasta. They did have a lunch and a dinner menu. Of course I decided on a steak before I even looked at the menu. That's why I was there in the first place. My choice was a Stuffed New York Strip. They stuff it with crab and shrimp and side with hollandaise and asparagus. When I asked the waitress about her favorite (which was a Filet Oscar) it had hollandaise and asparagus. I mentioned I didn't like asparagus and wasn't sure what hollandaise was (REALLY!). I choose the NY Strip medium well. It took about 30 minutes for my meal to come. But before I get to that point, let's talk about the wine list. It was quite wonderful. Many many choices and at the time of my visit there were 155 wines in their list. I selected a German Beerenauslese from the Rhine region. It's a very sweet wine, normally sold in a half bottle and always twice as expensive. But if you like sweet wines, these are tough to not drink. The nice thing about the German wines, is they have enough acidity so they don't taste like cough syrup. This was one of them. I only had a glass ( I was the only driver) so it was an expensive "glass" of wine. I implored the waitress to try it since I was going to leave it. She should share it with others too so they can try something different.

After my foood arrived, I tried to open my baked potato, but it was incredibly hot. Right out of the oven. If they microwave them, you couldn't notice it. The texture was of a potato that had been cooked completely in the oven. I like that.

The NY Strip was a bit over cooked. Not by the chef, but by my order. I should have choosen medium, but in every other restaurant that means bloody. I like my meat barely pink and HOT. He he, insert joke here--->

This was just gray, with a slight hint of pink. Unfortunately it was over cooked, I really couldn't taste the stuffing. Again, it was my decision for the order. I am sure it would have been wonderful had I selected the right cooking option.

My steak did come with a hollandaise and broccoli on the side as well as sour cream and whipped butter for the potato. The pre dinner bread wasn't anything special. It was warm but very little flavor. The butter offered was also in the little foil packets and they were cold. Kind of a let down to have to tear into those stupid little things while your bread cools off. I would have preferred the whipped butter. It melts better.

After dinner I had a few options. Normally I order cheese cake. This time I had a strawberry shortcake. It arrived in a to go box (something I requested). It was a very nice sized serving that was VERY cold. The cake was layered with cream in the middle, whipped topping on the sides and the right amount of strawberries.

Something I learned a few years ago, I put to the test again. I had a bite of the strawberry shortcake then a final sip of the Beerenauslese ( remember, it's a sweet wine). Unfortunately, the BA was very thin when tasted after the sweet strawberries. Alone, it's fine.

But honestly, there is only one wine that has been able to stand up to a test like that and it was the Chateau St. Michelle 2001 Eroica, Single Berry Select. That, my friends is the best wine "I" have ever had. Many don't like it because of the sweetness. But it can stand up to a dessert or stand by itself.

All in all, the ambiance, the staff, the food are all time and money well spent. I wish I was there with someone else, but it was still a worthwhile visit. If you are ever in Omaha Nebraska, I would wholeheartedly suggest a visit to Brother Sebastion's. Without the wine, the dinner was about $45.00. Slightly spendy, but still a nice place for dinner.

Just don't stay at a Holiday Inn, if you want the Internet to work (well).

Cholesterol LDL , HDL or BDSL

2007-03-06T21:29:00.000-05:00

I am at my second Holiday Inn ("HI")of the week. I checked out this morning at one in Council Bluffs ("CB") IA (Iowa) expecting to go home today. Well, it didn't happen. Now I am in one in Omaha.

Today is review day. No pop quiz either.

Both HI's have crappy Internet connections. Perhaps many lonely business travelers are surfing porn sites, but still, these connections should be better. At the CB HI, I couldn't access Bloggers log in page. ((Yes I did a restart, dump my cache and all that technical stuff)). At the HI I am in now, the connections are just plain slow. The SB HI also was a smoking room and I could tell. It was horrible, but there was a residual odor. It looked great from the outside, but you get into the rooms and you can see the mileage those rooms have received. ((I won't make any crude "mileage jokes here")) but I am laughing as I type.

This Omaha HI is pretty nice. The rooms are very clean and well equipped. They are under going a remodel, so there is a bit of a mess outside. My only complaint is the leaking toilet. I'm already unpacked for the night so I really don't want to change rooms. When I first heard this noise, I thought it was a "piccolo-pete" fireworks going off outside. A semi loud whistle then it tapers off. But I went into the bathroom and realized it was the leaking toilet. So, I shut off the water. BAND-AID.

BTW (by the way) my title references cholesterol LDL and HDL the good and bad kind. The BDSL means "Bad DSL" as in Internet connection. :)

.i'm in one of those moods. (where only I understand my really bad/dumb jokes)

In the heart of a nation

2007-03-05T23:14:00.000-05:00

Here I am in Omaha Nebraska. This is what I would call a little big city. It covers a lot of area, but when you drive around, it has a homey feel to it. Everyone here is incredibly polite and patient. I think the farther west one goes, the more patience there is to be had. I am definately not used to driving the speed limit. EVERYWHERE. So if you come to Omaha, don't be in a hurry, the roads are full of farmers that are kind of used to not getting anywhere very fast. And I mean that in a good way.

I ate at a steak place tonight that was DELICIOUS. Very clean and I think fair priced. Well for one anyway. for a family of four it could get spendy. I didn't look over the menu much becuase I saw what I wanted right away. If you wanted meat, this was a good place to eat.

My waitress was named "M". Well, it wasn't really, but for the purpose of the blog it is. (You know I don't ID anyone). We chatted a decent amount, and I wanted to talk more, but she was working and I do talk tooooooo much. ((I am starting to recognize that too)).

After my check was paid, I offered her a business card about the One-A-Day-2007 organ donation awareness project and I bluntly asked if she was an organ donor. Normally I try to ease into that. This time I just felt I should put it all out there. She is. And I continued to ask what helped her make that decision.

She wasn't sure. But it seems to be the right thing to do she told me. Later she mentioned that she was nervous about the first time she had to make that decision on her first drivers license.

We talked a little more and I mentioned my preference to taking action sports pictures to portraits. "This project and the portraits are very difficult for me" I went on to say. But the Awareness project is about the conversations about organ donation. The portraits are secondary.

I think, when she asked if I wanted to do more portraits, I may have missed an opportunity. I was too damn busy talking to realize that until after I left. I may have been able to get a picture of her, but I just plain missed it.

That is one if the job hazards per se. I don't get a second chance. I have one, single moment in time to determine the possibility in a complete stranger and make the request to take their portrait. It's truly a shame because some of these people I meet are an incredible joy to talk with. I can only imagine how much fun it would be to spend an hour shooting pictures. When I travel there is zero chance to ever meet this person again. But the reality is that I don't know if many of the people I talk to about the project ever actually visit the web site. Everyone says they will, but I RARELY hear from them if they do visit. I don't have any way of tracking visitors other then by the counter on the page. It would probably knock me out of my shoes if someone emailed or called and said "hey, I want you to come take my picture".

I mean really, that would make me so damn happy I wouldn't be able to stand it. It's a pipe dream, I know. But in order to achieve your gols, you have to dream right?

"M" had one of those faces that I could imagine in a painting. She had a great face. With her great smile, dimples and great teeth. I think she had straight hair and really cool glasses. It all looked....well, picture perfect. I love looking at peoples hair because of the way it can frame a persons face. It doesn'tmatter if it's short, long, red, white or brown. I am an equal opportunity photographer. I just like taking pictures of all people. I spend all my waking time looking at people and I imagine how they would look a certain way, or in a certain light. I guess it's a sickness. LOL, but I enjoy it.

As we were talking about other small talk, I mentioned that she reminds me of what I think my daughter will look like when she grows up. Except the hair. Then again, my daughter wants to color her hair, so it could end up being a different color than it is now. LOL

Anyway, I got to share my story of 'my' attempt to be an organ donor and the status of the recipient. I also shared the numbers, which I have below for you all.

This weeks numbers from OPTN.
Waiting list candidates as of today 10:30pm
All 95,223
Kidney 70,311
Pancreas 1,747
Kidney/Pancreas 2,394
Liver 16,931
Intestine 230
Heart 2,813
Lung 2,810
Heart/Lung 131
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - November 2006
Total 26,690
Deceased Donor 20,492
Living Donor 6,198
Based on OPTN data as of 02/23/2007

Donors recovered January - November 2006
Total 13,582
Deceased Donor 7,386
Living Donor 6,196
Based on OPTN data as of 02/23/2007

Weekend update

2007-03-04T17:44:00.000-05:00

Physical therapy (bike peddles, stairs and other exercises)
Occupational therapy (remove marbles from macaroni noodles and other exercises)

That's about all I have from last week. Since there isn't anyone there on a regular basis, I am not getting my updates. Yes, our visitors have all gone home. Now is the calm before the storm so to speak.
I am heading out of town tomorrow on the first of three consecutive trips in three weeks. The recipient will be in the hospital for about another week at least. But it appears that those three fingers in his left hand have not gotten any better. It is entirely possible (remember I don't play a doctor on TV) that he might have nerve damage. There is an incision under his arm (the armpit) that has a dozen stitches in it. So if a doctor decided to slice into that area for some reason....a nerve could have been cut.
If there is ANY positive outlook with this specific situation, it's not his writing hand. Hopefully, through therapy he will regain control and fine motor skills but I am very sure it will not be a short term fix. We are probably looking at YEARS and YEARS of therapy and even then, he may not ever get the fine skills or strength of the pinky, ring and middle fingers of his left hand.
**NOTE: If I get corrected on the assessment and outcome, I will post a correction.

Who or what next

2007-03-02T15:03:00.000-05:00

Okay, this week I have managed to piss of:
A few family members
My wife
My kids
My boss
My neighbors

I woke up today with a small headache. Knowing full well it would turn into a migraine. It must have been the three sweet teas I had at lunch Wednesday. It's the caffeine that does it for me.

Today, I was performing an online transaction to help a very dear friend out. The card was declined. Well, several phone calls and an hour later my card has been flagged as possibly compromised and the credit card company won't tell my why or how. So my account was closed.

Normally, this probably wouldn't bother me too much. I only use the card for traveling. Well, I am traveling MONDAY MORNING. ALL my expenses go on this card that is now closed.

I must have shit all over my Karma at some point in the past because there aren't many people I haven't pissed off this week. It looks like all my bases are covered.

.damn it, this week SUCKS!!!!!.

Can't please everyone

2007-03-01T22:09:00.000-05:00

Entry Word: compromise
Function: noun
Text: the act or practice of each side giving up something in order to reach an agreement

It appears that in between the pleading for people to share the stories of organ donation, the difficulty of the Organ Donation Awareness project, my son being sick and me sleeping on the floor of the bathroom with him, the recipient possibly getting a bed sore, or even the remote possibility of him having a stroke and the difficulty that we will undergo taking care of the recipient and his wife when I have to go out of town for my own job and the questionable care the recipient was receiving in the hospital.....I have upset someone.

I rarely hear from the readers of this blog. There are a few dedicated ones, and I am pretty sure I respond you you all. So either I do an absolutely incredible job communicating the situation here or some people just don't want to comment. No problem. Sometimes no comments probably mean I am doing a good job. Thank you.

This blog is a delicate balance of Organ Donation and personal accounts. It's a compromise. My compromise is that I don't identify anyone by name unless they are already a public persona. I already get flack from some family members that I even have a web presence. I can't imagine the 10 of you a day divulging the family secrets that I have here on the blog.....you already know everything. Maybe it's the one or two random readers that accidentally find the blog. But do they return? I will never know.

It started out as a documentary effort of my journey as I try to donate my own liver to save the life, or at least extend the life, of the recipient. Most people would do that for someone they are related to. A few would do it for a non blood relative or close friend. A very minute number of people would do it for a stranger. I know this because I talk to people about organ donation several times a week. I know this because there are more than 95 thousand people waiting for an organ. I know this because there are 6 thousand people that will die this year when they don't get an organ. I know this because I am living it!

I was willing to do it for someone that is not my blood relative or my own offspring. I even asked if I could donate my liver altruistically. That means that if for some reason I couldn't donate to the recipient then my liver (parts of it anyway) would go to someone that is waiting but cannot get one from their own relative or a deceased donor. I was denied at that point too. But I wanted to do it.

So when someone gets upset because they didn't like a sentence or paragraph of what I ambiguously wrote in a blog post it upsets me knowing they fixated on a small portion of the whole work that is contained in the blog.

Why am I getting this upset? I put my whole being into this blog. I put my heart out here and I am very, very careful to post very accurate information as I hear it, see it and experience it. While there might be other blogs and web sites that can make the same claim, it's this one that you are reading. If I didn't put out my true feelings on this blog then it would be misleading and a disservice. Remember, I started this blog so other organ donors could know what it's like to go through the process of donation. I wasn't able to get to that point, so I report what it's like to experience knowing a person that has received an organ. In this case it was from a from a deceased donor.

Out of all the activities going on in this blog and there is one thing upsets you, then I am sorry that there are people in this world that can't see the forest for the trees.

The funny thing about this is that two people that rarely talk to each other (from my understanding and recollection), even though they live only a few miles apart, have talked on the phone. At least I can sleep tonight thinking I brought people together......

And to be absolutely fair, you had people stand up for you. Here is something that was said on your behalf:
This was from an email "The comments seemed a bit hurtful to those reading it, I am sure. I know when this much STRESS is flying around it is easy to point fingers........." Another comment was made on your benefit but I can't remember the exact statement so I won't put it here to maintain the integrity and accuracy of the blog.

To end this post, I wasn't pointing fingers to lay blame or cause guilt. I was just commenting that what did happen, was what I expected to happen. Or more accurately, wasn't a surprise when it did happen.

Facts, figures and the future

2007-03-01T10:47:00.000-05:00

My 9 year old is home sick (as if you all didn't know from yesterdays post) and he had his head on my shoulder reading my replies to some email coming in from the blog posts.

He asked "Why do I have to be 18 to donate my organs?
I replied "You don't have to be 18, you are already an organ donor because you told me you wanted to be a donor."

We then went on to discuss what would happen if he was in an accident, or died before he was 18. Because his mom and I know he (and his sister) want to be donors, we will honor their wishes. From that, it would allow another child or several children (or even some adults) to be able to live through his (their) gift.

He responded to the effect that he was happy with how it would work out. He understands this process at NINE years old. Can he fully comprehend it. No. But for those of you that know our family, you know we are a very forward and honest bunch. We don't leave much to question.

Brutal honesty isn't something we shy away from.

Another thing that came up was the numbers. I went back in the blog (there is a search option at the TOP LEFT of the header). I found the first OPTN numbers I had posted on Nov 17, 2006. There were 94,126 people on the organ donation waiting list. Last night (around midnight) there were 95, 225. This morning around noon there were 95, 203.

What does that mean?

I had to use a calculator for this, but from 11/17/06 to 3/01/07, there were 1,077 added to the organ donation waiting list.

From midnight 2/28/07 to noon 3/1/07 (12 hours), TWENTY TWO people either received an organ or died waiting for an organ.

These numbers are pretty small considering the amount of people that die from other causes. That is why I am so hard set about discussing them. These numbers are totally within the boundaries of correcting them. Once they get to a certain threshold, they may very well be out of reach. PLEASE, share this blog information with others. I am not doing this for "the recipient" I am doing it for the 95, 214 (as of 3/1/07 1:10pm) waiting for an organ and the estimated 17 that die every day not getting an organ.

I did get some confirmation from an organization about the numbers that die every day. Obviously, it is impossible to know who will die when. So the current accepted average is 17 per day. That is 6,570 per year (365 day year) do not get an organ.

A good note was that the average was up to 18, but because of the many organ donation awareness programs that are currently in process, the number has dropped to 17. What is the difference from 18 to 17, it is 365, of course. ((I didn't need a calculator for that one)). LOL

To finish off this particular post, this was shared with me today from someone I communicate with via email.
"the reason I got into this is because I watched a close friend die waiting for a liver that never came. She was only a teenager. Losing her compelled me to promote donation through [ ]. So, I definitely understand how your [the recipient] illness turned you into an advocate."

To ME, it's seeing, hearing and sharing these stories that help motivate. Yes it's emotional. But I see the numbers, and can apply the logic to the process. I can really see that the number of people that need an organ, the number that die every year and the number of deaths in the US are all in the realm of possibility.

Next on the agenda

2007-03-01T00:28:00.000-05:00

The recipient is still having problems with the pinky, ring and middle finger of his left hand. Initially they thought it was from pressure from an IV in his under arm. Then after that came out, the numbness and limited movement was still there. Today, a physical therapist (I think) came by and the current thought is this is a result from a possible stroke. They will be doing some more tests to see if that's the case. But it's been over a week and I am sure the residue from a stroke will be long gone my now.

Regardless, they are looking at moving him to a physical therapy floor where he can still be monitored for the liver donation as well as begin physical therapy.

The doctors looked at the "bed sore" and they said it's not a bed sore. They haven't told us what it is, but they say it isn't a bed sore......

We may never know if he had a stroke. But in hindsight, he did have some really bad slurred speech. Of course, I am very positive it was from the medication. Then again, I didn't stay at a Holiday Inn last night, nor do I play a doctor on TV.

Organ donation in the news

2007-02-28T23:55:00.000-05:00

Today, on our local channel 4 there was a story about organ donation.
Story (with video) here:
http://www.thepittsburghchannel.com/news/11138139/detail.html
It's too bad the reporters facts are a little skewed. He states that there are 100,000 people waiting for organs. Yes, ALMOST. But I think being accurate might have been better. As of today, OPTN shows 95,225 (11:57 pm EST). In the article and video it states "As Ingram tags along, he said he was reminded that someone must die so that someone else can live." This is an unfortunate statement. Kidneys, livers for sure. And I have heard that partial lung transplants can be performed from live donors.

Maybe I need to check my facts too?

On MSNBC, there was a story about a kidney donation too.
http://www.msnbc.msn.com/id/17387791/site/newsweek

When will this day end

2007-02-28T22:53:00.000-05:00

I am sitting here on the bathroom floor. My son has been throwing up for about 4 hours now. He is curled up in fetal position on a small rectangular lilac shag carpet between the bathtub and toilet. He won't leave the bathroom because he doesn't have the strength to walk to the toilet to throw up. He doesn't want to use our "puke bucket" either. ((The 'bucket' is an old plastic bin from some trip to the hospital a few years ago)). It's pretty tough to see your kids sick like this. Of course when you are holding their head up so they don't bounce their teeth off the porcelain altar, it's very up close and personal.

I told him one time it would make a great picture. Her peered through his arms as they held up his head and peered at me with a thousand yard stare.

"Too....hard....to....talk...."he whispered.

Another round of dry heaves go by. It looks like we will be sequestered in the bathroom for the night. He has wrapped himself with three towels for blankets and a rolled up towel for a pillow.

Is that a twinge in my own stomach, or is it just the day catching up with me?

This day started with a big fat "F"

2007-02-28T10:26:00.000-05:00

I am pretty sure the stresses of the month are building. No, I am absolutely sure they have been built and are threatening to fall the hell over crushing me under it's weight. Yesterday, actually last night, my wife took the kids to the hospital. You can read those accounts on last nights post. She had some late work to attend to so I waited at Barnes and Nobel to get the kids from her. I wandered around, actually enjoying the 45 minutes or so that I had to myself. I got the call and met the wife and kids out in the parking lot. They had been driving my wife crazy. You know, being kids. We decided to forgo dinner for a bit and head back into the bookstore to see what was on sale. Eventually settling on a couple of art and history books. Then it was off to dinner.

Last night, really good. This morning, not so much.

I got up a little late. Last night our dryer wasn't working very efficiently so I had to baby sit the damn thing. It heats up, but doesn't dry. I checked the lint trap and hose, they are clear. There is hot air but the clothes don't seem to dry. It took FOUR hours to get half way through a load. But I could smell a burning/hot scent so I turned off the dryer and went to bed at nearly 1:00am. Now we have a dead dryer (or at least wounded) with a half wet load of clothes and a washer with a very wet load of clothes.

Once I finally got up, I had to motivate my sleepy head child to hit the shower ASAP. Not an easy task. I then headed down to make breakfast where my youngest was already eating and reading my blog. Which was pretty cool, I must say.

I hurried to make breakfast for the other one then went up and showered and dressed my self. After I made it down stairs, I had to sign a grade report that was very, VERY disappointing. But I couldn't dwell on it, nor could I fix it then or there.

I then realized we were about 10 minutes late and tried to rush the kids and myself to the car. I saw that there was lunch making materials EVERYWHERE! My youngest was making lunch for himself and possibly getting stuff ready for his sister since he didn't think she would want to buy lunch today.

"F*** !"I screamed!

Everything STOPPED.......

"We gotta GO!"...."NOW!!!!"

It was deadly silent by the time we all made it to car. As I looked back to my kids, I saw tears in the eyes of one and uncertain fear in the other.

Seeing this, I said "I want to make it crystal clear. As clear as a clear blue sky. I am NOT mad any either of you." "Neither of you have done anything wrong this morning." I added.

I went on to say, "As your dad, it is my responsibility to get you up, make you breakfast and get your lunches ready for the day." "I failed to do that today."

My words had little bearing on them. The damage had already been done. They took it upon themselves as the creators of this situation and nothing I could say would change that.

My day went from okay, to bad to worse to F***ed up in just a few minutes.

Not happy news

2007-02-27T21:34:00.000-05:00

Today's report from UPMC is not so great. Apparently, the recipient isn't getting the necessary care. Today, after being in the hospital for a week, he has a decent sized bed sore. It's not abscessed or anything. Yet. But with a wound of that type, infections are very possible.

I have mentioned before that hospitals aren't exactly the cleanest facilities around.

Since he is taking medications for organ rejection, AND he is borderline diabetic it puts him in a precarious position. Not to mention the hospital staff isn't always following proper hand cleaning procedures. Today, they came in, rubbed the anti biotic germ killer lotion on, gloved up and putzed around with the bed. The dirty, rarely gets cleaned, germ infested bed and controls. THEN, they used the same gloved hands and started to mess around with the recipient and his bedding and such. HELLO, that's what gets people sick!

Another report today was that yesterday, the doctors removed an abdominal drain tube. Which seems a little premature to me (to us). This morning, he was wet with leakage and blood from the area where the tube was removed.

I wonder what the insides look like?

The recipient isn't one to complain, but today, he was point blank asked if he is getting the care he needs. He said "no". That's got to be pretty bad when he says that.

Sunday afternoon, there was a patient alarm that was ringing for roughly an hour. One of our family members went to the front desk to see if there was something WE could do to help the patient. The staff effectively passed it off and never did go attend to the patient.

It seems that the 12th floor, South has issues at UPMC.

To finish things off, or at least start things going, a ruckus was made today. Two people that you would want on your side, made noise. Pretty soon, there were doctors, several of them and a bit of yelling and possibly some finger wagging. Things changed but only time will tell if it's for the better. Better care that is.

Our family has had it's times in various situations in hospitals. If there is one thing you can take from this blog. NEVER leave someone alone for a length of time in a hospital if you can help it. TAKE NOTES. Dates, times and activities. Usually, that is my job. No one else will do it. But when you have a document, the staff notices and subconsciously or even consciously, it makes for better care.

Over the next few days, we will be paying closer attention to the care the recipient gets. He isn't the only one there and we know it. But he's our charge too.

Quote Of The Day

2007-02-26T23:17:00.000-05:00

"LIFE'S JOURNEY is not to arrive at the grave safely, in a well preserved body, but rather to skid in sideways, totally worn out, shouting "Holy shit, what a ride!" - Mavis Leyrer

Making progress

2007-02-26T21:19:00.000-05:00

Well, from all accounts, things went quite well today. The recipient was able to sit up. Move and walk. Pretty dang good on day 6. He also got some grub! I don't remember everything he ate but I think it was substantial. Perhaps I can get more, better (LOL) recollection tomorrow when I head into the hospital after work.

Cool stuff

2007-02-26T12:19:00.000-05:00

The alarm clock that runs away and hides when you don't wake up. Clocky gives you one chance to get up. But if you snooze, Clocky will jump off of your nightstand and wheel around your room looking for a place to hide. Clocky is kind of like a misbehaving pet, only he will get up at the right time. nandahome.com

I wonder if Clocky and Roomba would chase each other around? What would their offspring look like?

HUGE stresses

2007-02-26T11:07:00.000-05:00

Well, Monday's suck, but when I received confirmation that I will be traveling out of town for the next THREE weeks, it just really sucked.

In many cases, I may only be gone for three days, but the three trips coming up are four or five day trips. Since my wife works from 3:30am to noon, it makes it a bit difficult to find a babysitter that will work at 3:00 in the morning. Actually we have one, but he's in the hospital.

.near tears, VERY high levels of stress now!!!!.

A bond

2007-02-25T21:07:00.000-05:00

Taking a clean white washcloth, running it under the warm water and wringing it out, she washes his face with great care. careful to not press too hard. Removing a few days worth of sweat, drool and I am sure perhaps a few hidden tears. I see this happening just a few feet from me. Yet I am perplexed at what my heart tells me. I think I am seeing her as a hero right now. She has taken care of him for many years. A decision we have both taken a part in, but she has the lead. Her piety is amazing. You can look into her eyes and see the fear. When we embrace, I can feel the trepidation. Her fear of what the future holds has taken hold in her mind. She feels the pain. His pain. But it is another pain. A different kind of discomfort.

There is nothing like a bond between a mother and a child. A man will never understand nor achieve that level of a bond.

Yet the relationship of a father and his daughter is something that stories should be told. Movies could be made and songs have been written. I can relate to that bond. I can understand from the point of a father. I can only hope, that we have placed into our children, the desire and the ability to care for another human being with the level of love, care and compassion that I have been witnessing in these past several days.

There is an unfortunate contradiction that has my emotions in a struggle between my heart and my mind where logic is the casualty. I believe I am jealous. There are pangs of hurt seeing her care for another man like this. Regardless of the man. Yet, I was ready to offer my own liver to save his life. It appears that I wanted to be the hero in the eyes of my bride. Yet, now, I have slid off to the shadows. My role no less significant. But not quite front row.....at least within the recesses of my emotions.

I have now been able to actually perform the role that I have desired so much. To take care of my children on a daily basis. I put them to bed, and get them up, prepare their breakfast and get them off to school. At night, we discuss their day and ensure they know that I care about their future.

Not much different than my wife and her own.......father.

On the road again

2007-02-25T00:01:00.000-05:00

The recipient had a BIG day today. He was given some yummy beef broth. Something that smelled decent, but looked like it was scooped up form a Louisiana bayou. It looked pretty brown. It was beef broth, and I suppose after five days of no food it will pass as food or something resembling a food product. He also got some crackers and a little Sprite/7UP/Sierra Mist to boot. Early this evening he was moved from ICU to a bed and rolled on down the road on up to another floor. He only stayed in ICU for four days. We were expecting to see him in there for about two weeks. There could be a couple of factors at play. One, would be insurance. Get him to a cheaper room. Or two, his progress. He has seen his (or "a") doctor a few times each day. Well, he remembers seeing one but it could be the hallucinations from the really "good stuff" he's getting for the pain. The good doc says things are going well. I guess that' waht we want to hear, right.

Anyway, he was on the move Saturday evening.

Once he made it up to hi s new diggs, we broke out the Lysol disinfectant wipes and wiped down all the surfaces we thought he might be able to touch and what ever we might be able to touch.

Hospitals aren't exactly the cleanest environments. We tried to do our part.

Before he departed the ICU, I found out that his nurse was from the beautiful Pacific Northwest. More inland than where I came from. But a NWer nonetheless. Once we learned that, i was asked to see if I had any pictures from one of our trips to the Great State of WA. Surely enough, I did. She was pretty excited to see those. So I offered to see what I had at home and put together a CD of pictures from WA, OR and ID. DONE!

The recipient made it up to his new room and we shortly followed after. It's pretty nice. A single bed so we don't have to deal with other visitors in the same room. I am sure as time goes on, he might end up in a double room. But for now, it will be nice. We were limited to two people in ICU.

He was pretty pooped out. We could see it on his face. He wasn't as talkative either. One of the main issues is his pain medication. A full dose will render him pretty loopy for about 12-15 hours. He can wake up but he isn't too aware. But a few hours after the meds wear off I think he has his best hours. Where he can hold a conversation and is aware. Another issue is he has double vision. He can't really read and watching TV (he has one now) might not be all that comfortable. He can hear, so it's at least something. his pinky, ring and middle finger of his left hand are numb and don't bend all the way into a fist. It's something the nurses have been made aware of but no one seems to think it's an issue. Except us of course.

My wife is sleeping in the room tonight. She wasn't convinced he is doing well enough to be in a new room without full supervision. The ICU rooms are wide doors and a nurse within eyesight. These are actual rooms and you can't see the patients unless you are actually IN the rooms. Hopefully, things go well tonight. The nursing staff is in for a treat, that's for sure. Wait until the other daughter is well enough to head to the floor. Whoo, wheeee.

Actually, to digress a little. My wife put don a few "orders" for the "new" nursing staff. She asked that everyone that enters the room, use the disinfectant gel that is at every door. The nurse in charge looked at her like it was out of the question. But yet, there are signs EVERYWHERE to have hospital staff wash when entering AND leaving. I'll leave it there, because you don't have enough time to go over the cleanliness of the rooms. This new one looked a little better. But really. It's not somewhere you can call CLEAN. No hospital is.

Scheduled for a move

2007-02-24T15:33:00.000-05:00

It appears that things are going well. The recipient is supposed to be moved to a regular room today. They had him sitting up in bed and he was drinking broth or had been given the ability to drink broth if he was ready for it. Both are milestones on the road to recovery.

But, we have one sick person in the group. She decided to stay home (well, her home while she is here) and he partner in crime stayed home too. Hopefully the rest will do good for them.

Quote Of The Day

2007-02-23T23:32:00.000-05:00

"Don't you find it funny that all these tough-guy boxers are fighting over a purse?" - George Carlin

Back in the game

2007-02-23T20:35:00.000-05:00

I took my daughter in to the doctors office today to have her eye checked out. We want to make sure nothing gets to the point of an infection. Obviously, since we are around someone with little or no immune system.
She doesn't have anything bad, but we do have some eye drops to clear what ever it is, up.

While I was there, I chatted with one of the nurses I will call "S". Another nurse there is a neighbor of the recipient so "S" already knew what was going on. So I told her my side of the story and that I was doing an organ donation awareness project with pictures. Of course, I asked if she was an organ donor, and of course, she was, and has been for quite some time.

"S" was a lot of fun to talk to. Unfortunately, she was a busy woman. You can see her portrait here.

I Can Feel It

2007-02-22T22:19:00.000-05:00

Through the dry cracked lips and harsh raspy voice, he said he feels better. Even through the constant pain, he knows the liver and himself are getting better.

Those words weren't what I expected to hear. But again, I really didn't expect to hear anything. Or much about nothing. But he said he can feel it. We talked about small things. He was pretty alert but drifted off every so often. The more we talked the more coherent he was. They took out the intubation tube late last night or early this morning. You can tell it bothers him still. But as always, he won't let you know it.

I shot some pictures of various family members that were here. Two more came in today. The two that show the most support are now here (three in total). These two have also visited the most in our four years here. So their presence truly is no surprise. We're glad to have them.

I looked through the pictures tonight and it was shocking to see how yellow his skin was. I have never really noticed it. But under the fluorescent lights and against another person as they were holding hands, I could see how bad he had gotten. I have also been told that his color is coming back. So at this point, I will trust those that can see the difference. I am almost ashamed to say I could not, or did not, see it.

He's a fighter

2007-02-22T09:13:00.000-05:00

Well, we warned them.

He woke up early this morning (or late last night) and said something to the effect that "I don't want this liver" wiggled his hands loose (or they weren't restrained) then pulled his abdominal drain tube out.

Ouch, that'll leave a mark.

They left it out, but I don't know if they sedated him again, or if they were able to get him restrained again. It's a little fuzzy at that point.

I should get a call later this morning to see what else has happened. I plan on heading down there this afternoons to check in on things.

Numbers for the week

2007-02-21T20:16:00.000-05:00

Waiting list candidates as of today 8:16pm

All

95,142

Kidney

70,160

Pancreas

1,747

Kidney/Pancreas

2,388

Liver

16,976

Intestine

234

Heart

2,824

Lung

2,825

Heart/Lung

132

All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - November 2006
Total	26,691
Deceased Donor	20,493
Living Donor	6,198
Based on OPTN data as of 02/16/2007

Donors recovered January - November 2006
Total	13,582
Deceased Donor	7,386
Living Donor	6,196
Based on OPTN data as of 02/16/2007

Quote Of The Day

2007-02-21T20:12:00.000-05:00

"I know why many families with tragedies end up in divorce. One of them is a pain in the ass." ~unknown

Wednesday Update

2007-02-21T17:47:00.000-05:00

Sometime today (I am not being updated very well by those present at the hospital) They brought him out of sedation but he's unaware and combative. Which that means he has to be restrained. We already knew of the possibility of restraints so it's no surprise to us. The recipient is probably surprised but it's for his own safety. Hopefully tomorrow they can take the respirator off/out and then he can communicate. Right now, all he wants to do is pull all the tubes off and out.

Sorry about the "summary" update. I don't have much to work with.

Afternoon Update

2007-02-20T21:59:00.000-05:00

Earlier today, while I posted about the pain and suffering of another party, I failed to update the status of the recipient.

He is doing well.

Let's summarize (according to my recollection and second or third hand accounts).
Mon 2/19/07 (mid/late morning) The recipient received a call from UPMC saying they might have a liver.
Mon 2/19/07 (early afternoon) They received another call stating that the liver may still be available and that you should think about coming to the hospital, but there is no rush.
Mon 2/19/07 (less than an hour after the second call) A bit more frantic, the transplant coordinator wanted to know why they weren't at the hospital yet.
Mon 2/19/07 (2:30pm) The recipient the wife and the daughter all head to the hospital. Not sure if this is the real deal or not. They check into UPMC and begin the battery of tests necessary in order to determine if he is viable and capable of receiving an organ.
Mon 2/19/07 (late afternoon/early evening) Other family members arrive as he is in the ambulatory area waiting to be assigned to a room. Early indicators are still in line with actually receiving a liver. Documents are signed and verbally discussed. But no doctor, nurse or otherwise has discussed how the procedure will actually progress nor what the expectations are to be for the evenings events. The initial time frame is 9/9:30 pm for either a word or an actual start time for the transplant.
Mon 2/19/07 (8:00pm) The recipient is wheeled up to a room with a view. At least for those not lying on the gurney. A duo of nurses come in to go over meds and the current days activities. The 9/9:30 time is still being floated.
Mon 2/19/07 (9:/9:30pm) A new time has been tentatively assigned and it is 12/12:30am. We inquire about the donor and no information will be given nor confirmed. Let me guess, HIPAA.
Tue 2/20/07 (2:30am) Time to head into pre-op.
Tue 2/20/07 (4:00am) Surgery begins.
Tue 2/20/07 (7:00am) The sick liver has been removed. Only issue and it's a non issue, is that the small portion of the liver that still sort of works has enlarged and it was tough to remove.
Tue 2/20/07 (7:00am) The new (to him) liver is being transplanted.
Tue 2/20/07 (10/11:00am) He has come out of surgery and is doing well. There are all sorts of tubes, IV's, and the like in, on and around him. He is still under anesthesia (type that three time fast) and will remain so for a couple of days. We have been told that he will be in intensive care for a couple of weeks. Of course it all depends on how well he does. AND of course if the liver is accepted or rejected. These first few days are critical.
Tue 2/20/07 (11:15am) A family member arrives at the airport. It's been a long 13 hours and the Atlanta Delta Airlines crews are on a shit list that isn't all too pleasant to be on. Good luck to them.
Tue 2/20/07 (3:30pm) We see him for the last time today and head home. Everyone is going to try and get some much needed rest.

Bed 14

2007-02-20T14:09:00.000-05:00

They arrived in a storm of sorrow. All four of them came through the doors with tears and sobbing.

Someone had died.

I don't know if it was their relative or a friend. It could have been a parent a brother or a sister. I will most likely never know. They are here in the ICU area with us. They might be here because of the results of an accident or a trauma. We are here for a transplant. The ICU, I think, is for those that need the closest of care.

They sat on both sides of the aisle. The hospital is normally a little dark. The offwhite walls are scarred by black scuff marks of guerney's and brown smudges from a long history of family and friends leaning on the walls. I exited out the waiting room as two women were embracing......comforting.....I couldn't stop. It would have been uncomfortable. Standing wanting to pass by them. I turned sideways and slowly made my way by them. Her hand was on the back of the other and I reached out.......touching her to offer some sort of support.

There wasn't any eye contect but I saw her hand. I hoped it helped. I wanted to help.

I walked down the hallway into an admissions area to inquire about validating our parking. It seemed so insignificant. I knew someone feet away has passed. On the other side of hte glass brick walls are people that have no idea about the event that have just recently transpired.

I know death happens every day. Few of us are privy to the events. But seeing the pain on their faces and knowing the sadness they are enduring was difficult. I returned to the waiting area and had to walk through this small group again. One woman was slumped down on the wall in near complete despair. He face was wracked with misery. Her eyes were red, her face was tear stained. Her eyes darted back and forth never completely looking above the two or so feet that she was at while slumped in a ball at the corner of the hallway.

She was, litterally and figuratively......at an intersection in her life.