The end is near

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/

Concerning issues

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

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.

Happy Birthday Bro

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

Melancholy funk

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.

Yeah, I am that good

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

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.

It's been a week

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.

You can't get to heaven in an armored car

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....."

Words to live by

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

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?

Facts, figures and the future

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.

What they think

While Becky and I post back and forth every so often, her words about me and the blog are touching. She is another motivated donor that helped me confirm my decision to donate as being the right thing to do. Check her blog out and BOOKMARK it. She has some good links to follow up on. http://chopped-liver-blog.blogspot.com/ You can also see her Saturday Jan 20 2007 post about me. (shameless self promotion)

Anyone have a tissue???

The things you find

Okay, I'm sort of on a roll. Really, I am unfortunately getting away from the focus of 'this' blog that is organ donation. But I see things and I have to share. It's who I am.

I was on a MySpace page of one of my classmates. As I was perusing the page, I saw a familiar face. It was my cousins wife. I checked out her myspace page, then her artistic page, which of course can be seen here http://www.dawnhatchett.com. Both she and my cousin are very talented in so many ways. It was really neat to see her wonderful works. Again, it has been so many years since we have been in the same room. Possibly even 15 or 20 years. It can't be so.....but alas, it could have been that long.

It's kind of a shame if you ask me. But that is life as we know it. Hopefully, the internet can bring some of us closer with web pages and the rare email message.

Those of you that stop by, leave a comment. I would love to know what your up to.

.thanks.