What I learned this year

Words mean little.
Actions speak volumes.

It's twist on the cliche of "actions speak louder than words". I am sure many others have said the same thing but it's what really sticks in my mind right now.

This day before 2007, I am looking back on what was 2006.
I spent some time on the road this year. Not as much as others in my office, but I racked up somewhere around 30,000 miles. It's the lowest upgrade status, but it's better than nothing.....I think.

The company I work for, lost 1/4 of it's staff in 2006. But the CEO thinks it acceptable. I think when we begin the new year, two more will be leaving.

My wife went back to work and quickly made it to where she left last year. But her company is one of the best companies to work for in the USA.

I was able to spend a week back home after a few years away. Let me sum it up by saying the reality didn't live up to the dream. Everyone has busy, busy, busy lives. Even I do realize that. And as I tell my kids, the world doesn't revolve around you (or me).

Someone close to me has been diagnosed with end stage liver disease and is now on the list to receive a liver. Which is actually the reason for this blog. I signed up to donate my liver to the recipient but was denied for medical reasons. Three others offered. The first of these three was denied early for medical reasons as well. The second, had other pressures and declined to continue the offer and the last of these three offered but when presented with the contact info, never followed through. And still has not told us.

That last situation is one of the situations that brought me to my first point above in this post. It has resonated within my heart for these last few weeks.

I have also realized from a meeting with a psychologist (from ONE short meeting) that I may have symptoms of ADD and a "control" issue. Being retrospective, some things make sense now. I write things down. I have a questionable memory. I am easily distracted during primary tasks. Magazines versus novels. TV shows rather than movies. There are more, but that's all I can remember (or want to admit). LOL

My daughter has turned the corner in growing up. She has begun a new chapter in life. It's tough to go through. But I will sum it up this way. For the last ten years, I have prepared myself, but I am not yet ready.

Because of my inability to donate my own liver. I have learned a little about organ donation in general and the process and situation in this country. There are just under 95,000 people waiting for organs right now. It's also really tough to cull the number of people that die waiting for organs. It's also not as many that die in car crashes. According to some statistics, one person dies every 90 minutes waiting for an organ. Roughly 5,843 per year. In contrast, there were just over 43,443 deaths from car crashes in 2005. (From 6.2 million accidents). An average of 119 die per day in a crash. One every 12 minutes. Do you wear your setbelts properly? Are you an organ donor?

I have published other numbers in the past. It seems that every time you look at stats, they change. You can also twist and turn stats to benefit your own agenda. "Figures lie and liars figure" was a quote a former boss told me one time.


Look ahead:
I have told many people that I can start lots of things, but need help in followup and finishing. Because of my somewhat loose diagnosis of ADD, I am challenging myself to a LONG term project. I will be taking pictures every day of people on the street. These portraits will be to help raise the awareness of organ donation. I will blog some results here and post the images on flickr.com. Hopefully tomorrow I will have my first portrait to post.

The end is near

Oh I feel like $h!t.

My son ended up with strep throat earlier this month. Then last week, my daughter caught it. We actually took her in too soon and the culture didn't come back until yesterday. I have been feeling under the weather for about a week now. But today is the cliche of achy head, stuffy nose, light ear ache, lack of sleep, winter blahs. It sucks. I just hope it goes away by next week. I have to head to Chicago on the 8th and I am NOT looking forward to being sick for that trip. YUCK!

I renewed a registration for one of our vehicles online today. In the registration process they ask if you want to donate $1.00 to organ donation awareness. Well, yeah! I then looked for more information on the state web site, but couldn't see much of anything. I also didn't dig as deep as I normally do. Yea, oh yea thine end is near.

Catching up

On the iPod: Today from the BBC, violetblue, CNN Video podcast, ABC News Video Podcast, Fox News Flash......I'm on a podcast tear. Having the news in a podcast is pretty neat so I can watch each station as I have time. While I might not look at it, I can hear it.

Here are the best blog on the web http://2006.weblogawards.org some are really good. Some I still haven't read. But I will eventually.

I haven't blogged much lately. One, it's the holiday. Not that it really matters, but I took a break to look inward and all I saw was some lint in my belly button.
Secondly, I am actually doing other things than sitting in front of the computer. Not sure what I like better......

I have but a few days until the One-A-Day-2007 Organ Donation awareness photo project begins. I haven't actually run my shtick across anyone else. But I think I will accept losing a few subjects as I hone my skill. Comment with anything you can think of. Goo, bad or indifferent.

Tomorrow I was gong to post the final numbers regarding the waiting list. But I will post on the 31st, since it is really the last day. Right now, the list has 94,688 people on it.

2006 was a pretty good year for me and my family. Lets hope 2007 can be as good or better for us too.

Movie night

Since it's somewhat of a rarity, we are all home tonight and are having our family movie night, featuring nachos and Ice Age 2. We'll hang out in the theater and watch a movie. This, is a family holiday.

On the iPod (now that I have one):
Violent Femmes, Direct Current, Kenny G, The Beatles, Giant and Outkast.

It's almost the end of the year

I wasn't sure to do this now, or Sunday. So I will probably do it both.

Although I throw in a lot of personal flavoring. This blog really is about organ donation. But I guess the real impact can, and is, felt at the whole family level. With Christmas fresh in our minds, we (read "I") wonder if it's the last with the recipient. Realistically, it is not. There are still several years left. But on bad bout with the flu or another sickness can change that. Then again, it can happen to anyone anytime, anywhere.

With that lead in. Have you made peace with your God? Christianity teaches us to prepare for "the thief in the night." Sickness, accident or a return of Jesus can bring about some major change in plans for a holiday.

Secondly, are you an organ donor? Most people put it on their drivers license at renewal. But that is every four years or so. You can put a sticker on the DL and you can carry a donor card.

If you have concerns, here is another link to a web site with FAQ's regarding organ donation.
http://www.giftoflifefoundation.com

There are so many resources out there regarding organ donation. Check them out. Email me or leave a comment if you have any questions.


Here are our numbers up to today:

Waiting list candidates as of today 3:12pm
All	94,710
Kidney	69,548
Pancreas	1,764
Kidney/Pancreas	2,394
Liver	17,046
Intestine	238
Heart	2,845
Lung	2,883
Heart/Lung	139
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - September 2006
Total	22,016
Deceased Donor	16,877
Living Donor	5,139
Based on OPTN data as of 12/15/2006

Donors recovered January - September 2006
Total	11,194
Deceased Donor	6,057
Living Donor	5,137
Based on OPTN data as of 12/15/2006

Help needed. One storm hit hard. Lots of debris still about.

We have finished the unwrapping of gifts. And as normal. We have outdone ourselves. With the help of granparents and my brother and sister in law.

My daughter has already said this is the best Christmas ever. Of course the highlights are the refridgerators in their rooms. Her Nintendo DS, Heely's and the little critter called Bob...now called...Chocolate Chip. Personally, I wanted to call him Plasma. She did afterall ask for a 4.5 inch Plasma. Or was it a fourty-five inch plasma?

I saved the above post thinking I would actually post it on Christmas. Ooops.

My son has also called this the best Christmas ever. He got several top item things like a refridgerator, camera and Heely's. Then today we topped it off by his sister floating him the cash to get his own rodent. Well, it's a guinea pig too. His name is.....I don't know what the name is. I heard a dozen or som names on the way home.

Me, I asked for a few things. I got an iPod. I was pretty happy to have that. My mom and dad hooked me up with some cash for my goal of a new (to me) digital camera. I have one, but I am exceeding the limits for the types of pictures I shoot most often.

My wife got a few small things. Her big gift was a car a month ago. Granted it wasn't really a Christmas present. It was a reward for getting a promotion. We tied it together. Sort of.

We had a merry Christmas. I hope you all did too.

Merry Christmas

Our family to yours. Merry Christmas.

Back at ya

Today is Christmas Eve. I wish everyone a great Christmas day and New Year filled with love, joy, understanding and acceptance.

My daughter has had friends over these past few weekends for sleepovers. Then on Saturday like the millions of others, we go shopping. Oh...Joy!

Actually, the shopping is my idea. It gets us out of the house and into an environment that I can observer my daughter with her friends in a neutral place. THE MALL.

My wife and I have raised our kids with the main goal is to understand that everyone is different. Not every one drinks chocolate milk or eats broccolli and cheese. But we also teach them it's good to be first. Work hard, learn hard play hard. It pays to be a winner and be the first in line, first to answer a question and first to offer help to someone.

It seems to me......that what is being taught in this particulay geographic area, is that my opinion is the only one and I am crudely going to tell you what it is and I hope you feel uncomfortable about it.

Backstory: We were heading down the road to the mall and movies came up. My daughter said she wanted to see "Night at the Museum" at the Imax. Friend said "That movie looks retarded." (long uncomfortable pause) When I piped up that I want to see it too. My daughter was relieved that she had someone in her corner. The friend wasn't sure what to say next. (She was probably thinking I was retarded).

Another conversations was on food and she used a word that is used very often around these parts. HATE. It is one of a few words I don't tolerate very well. I informed her she "dis-liked" or "didn't like" or even "really don't like" but we don't use the word hate in our house. (Another long uncomfortable pause).

Is she a bad person. Absolutely not. Different, yes. Good for my daughter....time will tell. But one thing for sure, is that she speaks up for what she believes in and what she want's. Something my daughter could learn from. Both my kids actually.

Most of the kids their age are raised from what I call the "steel mill mentality". It's still around and it burned in. West coasters either adapt or get run over around here.

Prepare for new years eve

Yeah, I know, I might be donating my liver why would I be drinking? Well, I am not. But I will. A little. LOL

I don't drink often and have NEVER been drunk. I despise the thought. AND those that do it often.
I enjoy a really good glass of wine a few times a year. But they are few and far between. My wife and I have actually found two we both like. One is a sparkling wine from Italy called Elmo Pio (about $9 a bottle). The other was a red wine we had when we went to dinner a few months ago. Of course, I cannot remember it off hand, so you wil have to trust me.

Since it is the holidays, many will use it as an excuse to buy a champagne for dinners or new years party's. Most sparklers are Brute. Elmo Pio is an Asti. Don't know the difference, then head here http://tinyurl.com/y4rj89 for a little primer on selecting a bottle of the bubbly.
This is the link:
http://www.fastcompany.com/magazine/111/open_bottled-up.html

Yes I have had the cheap (you can't get much cheaper than 9 a bottle) and I have had the expensive (Dom Perignon and Cristal). Perhaps it is my tastes, the Elmo is more drinkable. It is sweeter and because I am already so sweet, it's a great match.

So if you are not familiar with any wine. Have a party. Invite all your friends and family and have everyone bring two bottles and have them pay 25-40 dollars a couple to attend. Then go buy a bottle (or two) of something no one will buy on their own. Then put all the bottles in their own paper bags, then have a tasting party. No one gets drunk, serve some food and enjoy the friendships stories and fun.

I am sure a few will say that that's not Christian. Well, I won't argue here.
But I will say that alcohol is a chemical that affects your body and mind. Not much different than nicotine, caffeine or mood altering medications for depression, anxiety or illnesses. Some are prescribed by a person that has attended medical schools. Others are bought over the counter. It's up to YOU to determine the amount and wether it should be ingested.

I have started

Not long ago I challenged you all to have discussions with people about their organ donation status. Yes, it's difficult and I do know that it's not everyone's cup of tea.

I talked about it with two of my co workers over lunch. Both are donors but one has not talked it over with their family. I explained that even if it says so on your license, which they both showed me, there is still a chance that the organs will not be donated if the family challenges or refuses it to happen.

I then went on to explain according to OPTN.org data, there are about 13,000 people that die every year that could donate but aren't donors.

(almost) open for business

I have been busy preparing for my One-A-Day-2007 project that starts in a little over a week. I have typed up a little sheet to help promote the cause. I have business cards with the flickr site as well as my email address. The blog will have the link and the photo site will have the link to the blog.

Then there is the issue of how to approach my subjects. As I mentioned above. I wrote up a "news release" of sorts, to hand out to people in addition to my business card. It has a little history and an explanation of what the project is about. My biggest concern is how people will react when I ask them if they are an organ donor. That's a pretty personal issue and when you combine it with me taking a picture, asking them to sign a photo release (with address) it all get's to the edge of creepy. I am sure everyone will come up with all sorts of images of lying in a bathtub filled with ice. Well, of course it's not going to be like that. But I still want to make it as comfortable for them as possible.

I did try my approach with my son. I stumbled across several key ponts and remember not looking him in the eyes. He responded with a "screw you". Then he promptly apologized for the language. But he recognized the role playing and I got a good response. (No, he wasn't in touble with the language). My daughter of course took the other road and I worked her knowing she would say yes. But I still stumbled on the delivery. It will take some time and practice.

I call bull$hit

I mentioned almost two weeks ago that our neighbor offered to call the Living Donor Coordinator to see if it would be possible to become a donor to the recipient.

Well, I have talked to them a few times since then and nothing has come up.

So, I call bull$hit on the offer.

Is it fair for me to air out the dirty laundry here before I confirm if the call was made? Probably not, but I am anyway.

To be totally honest, I doubted the reality of the offer in the first place. Many people will make verbal offers like:
Person: "If there is anything I can do to help, please let me know."
Crusader: "Well, yes there is, call this number and see if you can donate to the cause."
Person: "Oh, you mean like do something?"
Crusader: "Yes, 'something' would be good."
Person: "Um, well, I think I have laundry that day....."

Whatever.

I'll eat my words tonight, but I need to vent and post right now.

If anyone calls the Donor Coordinator, then they get back to you that day or the next business day. Heck, I got a call on Thanksgiving morning, so this is something the Coordinators don't dawdle on. With some people, a day can mean the difference between life or death.

The primary factor of the neighbor (not) donating is the spouse. While they mean very well, the significant other isn't really capable of supporting the whole family during a signifacant time of medical recuperation. You can only survive on pizza and BBQ for so long. In order to have left overs, you have to cook first. Right?

Let me re-phrase that. Capable, YES. Willing, probably not.

Let's see if there is crow for dinner tonight. Come back later to find out.

2006 Pictures of the Year

Since I am a photographer here are MSNBC's selection for pictures of the year.
Some you may have seen, many you probably have not.

Slip, slip, slipping away

High hopes dashed to earth by real issues.
Nothing on the medical front to worry about. Just the fact that estrogen is the most powerful force on the planet, perhaps in the universe.

My daughter, my loving daughter, my dream come true, has nearly completed the course in "Father Destruction 101".

I have been anticipating this time period, but not fully preparred to have it hit me head on as hard as it did. She has begun the process of coming of age. It started out the day she called me "dad". Not dada or daddy, but DAD. I actually stopped in my tracks. Did I really hear that? Did she really say that? Even she knew that there was a paradigm shift in our relationship that moment. She too stopped, wondering what was going to happen next........

Early summer, she asked me to not call her our pet name for her. I complied. Then not long after that, she asked me to not hold her hand or show affection in public. Now, when we are out in public, she doesn't walk near me. She talks to me very little. Her mind is on shopping and friends.

....she is slipping away and I have to let her go.........

.sigh.......

Because figures lie and liars figure

After reading this top ten list, I know it can go both ways. Heck, how many times have we heard in the last few years that wine is good for you, wine is bad for you, wine is good for you. Then there are eggs...good, bad, good, bad.....low fat diet....good, bad, good....shall we throw in coffee too?.....Here is a link from foxnews.com that was fun to read. GO Al GO!!!
http://www.foxnews.com/story/0,2933,236598,00.html

There's room for improvement

I found my blogs ranked on Technorati.com.
I am ranked 1,538,965. Woohoo.

Now a word from our sponsor

First off, I would like to thank those of you that have read the blog in the last 24 hours.

Secondly, I have a sponsor lined up to help me with my weight loss and dieting. I will fully disclose who it is once some more details have been lined up. Hopefully this weekend or early next week.

I found some stats for Dooce.com. That blog is one of, if not the most succssful personal blogs on the internet. They get 800,000 hits a month. That is crazy huge for a personal blog.

I got my Shaklee drink mix

It came in teh mail today and I contemplated what to do with it......it was suppose to be for the recipient, but you know....I had to make sure it was suitable for consumption.

Yea oh yea, I bowed to the pressure. I opened the cannister. The powder was a light brown and I thought, it doesn't look like cardboard. Then I smelled the light chocolate powder and thought, hmmm, it doesnt smell like cardboard.
I read the instructions. 1/4 cup powder with 8 ounces of milk. Options: blend with a few ice cubes.
So, I tossed in all the ingredients, blended with ice and tasted......
Man was I mildly disappointed. It tasted really good. Not like cardboard at all. Now, do I keep it...or do I offer some to him and see if he likes it........
You will have to come back to see what happens next.

Well that sucks

I have been getting everything ready for the oneaday2007 project in January. Over the weekend I set up an account on http://www.flickr.com then signed up for the Pro account that gives me a little more flexibiltiy in what I do with the photos. Well, in my stupidity, I realized I screwed up when creating the accounts. Here's my event summary.
1) Create flickr account oneaday2006 (because the year 2006 has been ingrained in my head for a year!)
2) Minutes later, sign up for the pro account and pay via credit card.
3) Scream because I used the wrong year in the account and just paid for the damn thing.
4) Search the FAQ and forums to see if the paid account can be transferred to a different account. Well, there were several people asking the same question, but no definative answers. One person was sort of told to wait until the flickr staff can get to his case, which leaves hope.
5) No REAL answer was obvious. (In hindsight, there must have been a mention of it in the Terms of Use).
6) Delete the oneaday2006 account and log back in and create teh oneaday2007 account.

Doh!

7) Log in and see that the oneaday2007 is not a flickr pro account.

.sigh.

At least I will have some nice business cards with oneaday2006 on them.........and a line in my statement for flickr oneaday2006.

"Dammit Jim, pull your head out of your butt, this isn't rocket science you know!"

P.S. Ana from flickr did email me back to say they will not transfer pro accounts. So I seriously doubt that I will be using flicker for my oneaday2007 project. To much of a loss already. If you use flickr for sharing, think twice so you don't get things messed up.

6 degrees of seperation

ABC News Primetime just finished up and it was about "6 degrees of seperation". The story was about two strangers in New York City had to find the same total stranger, in New York City.

Greater NYC has more than 21 MILLION people. One of the people found the stranger in six links and the other person found him in FIVE. Then they took that person, Petey the boxer to find a dancer on Broadway. He did it in SIX.

Check out the link to Primetime above and here is another link to the original 6 degrees study from Columbia University. You can also take part in the Small World experiment at Columbia.

Leave a comment if you take part OR what you think about this 6 degrees of seperation thing.

Good news, good news, good news, good news, bad news

A few minutes ago I met with the doctor who happens to be the same doctor as the recipient. He looked over my charts and records etc and pretty much asked why I was there. I said I was diagnosed with Hemochromotosis and a fatty liver. He looked at my charts and didn't see where the Hemochromotosis came from so he ordered a confirmation blood test and a DNA test to make sure everything lines up with my "diagnosis".

He was more concerned with my fatty liver. That does need to be taken care of. The fatty liver has a bad long term diagnosis as well. But he was still perplexed that I was told I had Hemochromotosis. In his mind, I do not. He went over the blood test results and showed me my numbers then he told me the "normal" numbers.

Even though he didn't see anything that indicated it, he wants to see what the second set of very specific blood tests will result in.

So that's good news #1.

Good news #2 is that the fatty liver has not been damaging. From what he could see on the tests and the biopsy results, indicate that my fatty liver can be stopped or loosely reversed by diet and excercise. He and the other doctor both mentioned the South Beach Diet. So I guess I know what I will be getting in my stocking for Christmas.....
I have a followup appointment Jan 16th to see how things are going as to go over the results of the tests ordered today.

Good news #3 (for me anyway) is that if my fatty liver is reduced or eliminated, I may still be able to donate my liver to the recipient. (Sorry mom). But it's not 100%. They have been able to do donations from donors with fatty livers to recipients in Japan. The genetic makup of the Japanese versus Caucasians has not been studied so they don't know if us fat Americans can be successful with that type of donation. (The "fat American" quip was mine). The Japanese v American was the Doctors.

Good news #4 The doctor I saw today is willing to correspond with me with any questions I have for the blog. Sort of a pseudo medical consultant. He was really excited to hear I had a blog. I also told him my plan was to get the blog into a book form next year and I was planning a photo project for 2007 to help bring about awareness of organ donation. He was honestly very excited to hear about these things and offered help and information.

I had mentioned a while ago that for this informaiton puzzle I have:
1) Beginning liver donor (that's me)
2) Recent liver donor (that's Becky)
3) Recent liver recipient (that's Joe)
4) Currently waiting for a liver (that's Ed)
5) I WAS missing a doctor or nurse involved with liver transplants.

Now I can fill in #5 with my hepatologist, Dr. Shaw-Stiffle. Yeaaaa

Bad news #1. My doctor (and the recipients) will be leaving Pittsburgh in January for Canada. He is returning home to care for his parents. While I do like him, and it would have been great to have both the recipient and I to have the same doctor, we wish him nothing but wellness and succcess back home.

I have motivation. I have heart. I have a goal.

Right now, I have in my head chapters for the book.
Ch 1, An offer to extend a life (my donation story)
Ch 2 Diagnosis and denial

Lets move on to chapter #3, "A new outlook on the future"

Quote of the year

"It feels like we are in a furnace," said James Zanzot, an inmate who has lived in the! Tents for 1 year .

"It's inhumane."

Joe Arpaio, the tough-guy sheriff [ARIZONA, MARICOPA COUNTY] who created the tent city and long ago started making his prisoners wear pink, and eat bologna sandwiches, is not one bit sympathetic He said Wednesday that he told all of the inmates:

"It's 120 degrees in Iraq and our soldiers are living in tents too, and they have to wear full battle gear, but they didn't commit any crimes, so shut your damned mouths!"

Babble babble blah blah

The site isn't for the faint of heart or conservative in you.
While I expected some edginess to it, it's nearly offensive and that coming from me....is disconcerting.

I think the site has potential. The writers and bloggers on the site have a nice new venue and they are driving their shiny new car. But there are too many "F" bombs in a few of the blogs for even me to be comfortable with.
With that being said, deeper clicks make the site look like it's made up of blogs. In and of itself isn't bad. But now I feel like I am viweing an aggregator. Nothing like MSNBC that's for sure. (Not that I go there much). Okay, I do. AND Foxnews.com.

There are regular columnists, features, products, reviews and more. The site is designed for the URBAN, (read "city") DWELLER family, NYC for sure. There might not be much for the parent living in Walla Walla Washington but rest assured, if you can get past the semi offensive language, it's might be a resource.

We aren't all the same cup of joe, that's for sure.

Today is the day

I have an appontment later today to see what the Hemochromotosis and fatty liver have actually done to my body. I already know the fatty liver affects 75%. But I don't know what the Hemochromotosis has done, or what the short term or long term issues are going to be.

I hit babble last night and it wasn't up yet. That was about 9:00pm Eastern. THis mornign it's up and I will peruse it as I have time and giv eyou my first impression.

.not that it really matters.

FYI on babble.com

It designed to be an edgy publication.
If you prefer the crunchy, tree hugging, sandal wearing, tight fisted, republican, conservative, plain wrapper type of web sites. Don't go.

In on something new

Tonight a new web site will launch. Yes, it's NEW, as in not there yet.
Well, the domain exists and there is a splah/parking page to let you know it launches tonight.
http://www.babble.com in their words is "an exciting, intelligent daily publication and interactive community for urban parents."
You say you're not an urban parent. So what. How many time do you get to be one of the first 3.287 million viewers of a web site?
I'll be there....will you?

I'm torn

Looking at this blogging thing a little closer. I love the fact that Heather at Dooce is actually making a living at blogging. How cool is that? But when i am only getting a few hits every few days, it's not a reality. I could probably have better luck being a walk on place kicker for the Steelers next summer.

.sigh.

I mirror this site and all the posts on WordPress just in case this site goes down (which it has) but I think Google got the idea that no one was happy with what was going on in Oct/Nov when the site was down FREQUENTLY. It's very stable now and they have a beta version of blogs that seems to be going very well. POOF! (See you didn't even notice I switched over to the beta version).

Anyway, WordPress is the technology behind many people that are using a domain name and blogging that way. How do you (or I) know. I won't bore you iwht the details. But each has it's strengths and weaknesses. I think WordPress is designed for websites and people that really ant to use the strength that it's capable of. Blogger, is geared for growth, but is lacking several features that would be nice. One is the export capability. I cannot export my posts easily on Blogger. WordPress you click export. I can also import from Blogger into WordPress so all my comments get carried over too. I like that.
I guess I will use the WordPress for my book and Blogger for....well. blogging.

Then there is Moveable Type.

.not that you all care.......

Dig deep, be afraid of what you may find

I was searching a web site and found the policies that dictate organ transplant.
In those documents it explains whoe gets one first then who gets one next.
Within thses documents it also explains what information can be released to the public.
Within that information, I think I have an idea where my recipient is located in "the system".

I am pretty confidant this data is current as of this afternoon 11dec06.

There are 148 on the waiting list based on blood type.
When you break that down using the MELD score (he has an 8) there are:
49 with a MELD score of 10 or lower.
57 with MELD of 11-18
26 with MELD of 19-24
2 with MELD of 25+
That's 134 waiting with MELD scores

With 148 on the list, I am guessing some of those (maybe 14) that might have a status 7 which means they are not able to accept a transplant for some reason and the Status 7 means inactive.

The recipient could be 133 people closer to a liver or 147. Regardless, it's not anytime soon.

Since I am NOT a statistician (nor would I play one on TV), my numbers may be waaaayyyy off. Your mileage may vary.

Since these are real, live people above, being represented by those numbers. Everything changes daily. In some cases, hourly.
My recipient is one of those. It is a sobering to see it in simplified black and white numbers and it doesn't remove the importance or need.

At this point, we (I) am not expecting a live donor. We are still waiting for a bit of news regarding our neighbor. I won't be holding my breath.

I like it, I really like it

According to a phone call I made earlier today the recipient is doing better. It could have been just a bout of the winter blahs.
He isn't deteriorating, but we have to be concerned with many things and knowing his normal temperment and activity level....we rush to judgement.

We were shopping Saturday and looked in a health food store for something that he can bring up his weight and provide some nutrition. Well, I jotted this little foray into the store down in my pea brain, and recalled it today. I headed over to the Shaklee web site and bought one of their "Meal Shakes." I remember my grandma using the brand when I was in Jr High and High School. The stuff really left an impression on me. I can only remember it tasting a bit like liquified cardboard. Yuuummmm! But she made it with 2% milk and ice so it was sort of like a smoothie. That tasted like cold cardboard. LOL
Anyway, a Shaklee shake and some toasted cheese (NO, not grilled cheese). Toast, from a toaster, then you put cheddar cheese on it then microwave it until it's just melts then salt and pepper. Damn! Brings back memories of swimming all day. Thanks Grandma F.

I went ahead and bought some. I will get it in a week or so then let you all know if it still tastes like cardboard. Honestly, I hope it does. I kind of liked it.

Truly touched

Everyone wants to be recognized. But when it happens, sometimes the reults are not what you would have expected.

I blog for many reasons. I have had a few iterations of a personal web site. Beginning with the free yahoo pages, then my own domain name for a few years. But I was spending (way) too much time on the formatting and pictures and other things so I abandoned the personal site for a year or so. Now, I have resurfaced on blogger/blogspot. The primary reason I have a web presence (in this case a blog) is to let my family know how I am doing. I live near Pittsburgh PA and they all live on the West coast.

I have a tendancy to write between the lines and I am sure those of you that know me, can see that. I also write point blank. Sharing some things that many might think are a little too personal. I also write to keep my creative juices flowing. Lately, or actually because of, it has been therapeutic.

Becky from http://chopped-liver-blog.blogspot.com and I have been trying to keep in touch. I contacted her after finding her blog in a blogger search. She had already donted her liver to her brother and blogged to share her story with others. Since she was a few steps in front of me, I wanted to know what it was like. I have also followed her brothers story in his blog http://myfaithinhumanity.blogspot.com. Then there is Ed who is waiting for a liver and his blog is here http://live-for-life.blogspot.com they are permanent link on the right of this blog but I want to encourage you all to visit their blogs and also send them a note or leave a comment.

I mentioned last night in the weekend update about my message from Becky. Although I have never actually talked to her, she has been a form of encouragement for me.

I referenced recognition in the opening of this post. When I read Becky's blog this morning, she mentions me in a way that brough tears to my eyes. It's one thing to write, but to read about yourself brings on a new reality. Seeing the word "rejected" (in reference to donating a liver) and my 2007 project have become very REAL now. I was rejected! I am doing a project that sort of started out as a personal challenge. But it can be bigger. Much bigger.

Thank you Becky. You have brought tears to my eyes. (It's all good!)

Here is a quote from her regarding her scar at nearly one year post donation
"..... the scar runs perfectly vertical down the middle of my torso, so from a distance it just makes me look like my abs are a little more ripped! And of course, when I look at it, or feel it, I remember Joe and the whole experience, and I swell with pride and faith in miracles, so it's a part of me I wouldn't give up for the world."

While I won't experience the donation. I can encourage all of you to search out your personal beliefs regarding organ donation. Live or after you pass away. Please discuss it with a family member.

Here are the current OPTN numbers.

Waiting list candidates as of today 8:01am
All	94,378
Kidney	69,248
Pancreas	1,764
Kidney/Pancreas	2,408
Liver	17,039
Intestine	239
Heart	2,848
Lung	2,851
Heart/Lung	142
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - September 2006
Total	22,010
Deceased Donor	16,876
Living Donor	5,134
Based on OPTN data as of 12/01/2006

Donors recovered January - September 2006
Total	11,188
Deceased Donor	6,057
Living Donor	5,131
Based on OPTN data as of 12/01/2006

Weekend update

It's Sunday night and the recipient is sick. He was pretty good yesterday and this evening I was told he was pretty yellow and stayed in bed all day. It could take weeks for him to get better, and he's not one to lie around. Gotta keep moving.
"The day's half over my 9:00 am." he will often say.

I have received some nice emails from my cousin (he has won awards in the last three Micro Cinema Fest film festivals in Chicago) and Becky (giver) chopped-liver blog. Thank you for the words of encouragement!

The blog hit 600. Thank you for those that do stop by. Don't forget to leave a comment every so often to let me know your there.
Since I sent the link to about 40 people, I think I must have alienated several of you or since I am not actually getting sliced open there isn't much to see anymore. I did promise pictures. Sorry 'bout that. Maybe next time. I would have figured about 20 hits a day or so. But it's averaging about 3 a day. It's a good thing I wasn't an accountant or financial advisor.

Not much else to report this Sunday eve. My first biz trip is already scheduled for Jan 8. Then I am sure it will be frequent from there through next fall.

Hug your kid, kiss your parents and smile at the clouds for they bring rain.

Numbers and figures, figures and numbers

Something a little different. These numbers were taken from the giftofhope.org webb site and they appear to come from the OPTN.org data.

• Every 13 minutes, a new person is added to the national waiting list.
• An average of 18 people die each day while waiting.
• More than 4,800 people died waiting for an organ transplant in 2005.
• In 2005, more than 242 people registered for transplants died while waiting.
• One donor can save or enhance the lives of mor
• e than 25 people.

http://www.giftofhope.org/understanding-donation/trends-waiting-list.htm

Are you an organ donor? Have you told your family?

I'm hot today

Here's another link for organ donation.
http://www.giftofhope.org/

More to see than meets the eye

Maybe it's running off on tangents?

Either way, here are some other blogs you should visit. (Note: I haven't found anything offensive yet, but your mileage may vary). P.S. ~ No boobies to be seen.

This guys top 30 list of blogs fimoculous

I personally like this one indexed this is #1 of the above, so if you don't want to have the suspense destroyed, don't go here first.

You light up my life

I have been keeping up with Heather over on her blog Dooce. The other day (December 1st) she blogged about her view of Free Range Chicken Broth. I don't want to screw anything up by paraphrasing wrong or butchering anything, but it was pretty funny, to "me" (and a few others). But some really got worked up over it and decided to hatmail her. She, of course posted some of those messages. Now, there are almost 500 comments from all of this.

It is pretty good reading to say the least.

.no, I haven't read all the comments, just a few of them.

More good news to share

My brother and his wife are expecting their second child come next year. YEAAAAA for them.

Other good news is that my mom tested negative for Hemochromotosis.
That puts the pressure on my dad to see if he passed it on to me. If he is negative, then I am an anomoly. Which could be good and that my kids may not get it. Then I will blame it on the military and the various concoctions I had to take in the early 90's when we were in the desert watching the wind blow.

.hmmmm.

We have a winner

Or at least a qualifier.

Actually, we have a hero.

Our neighbor has offered to make the call to UPMC to see if she can be a live donor.

We are also working on fund raising to offset the costs for who ever becomes a donor. Any ideas would be greatly appreciated. Eventually, I will actually ask for money.

"Smile Theo, it's Christmas."

Overcome the obstacles

http://www.nicholasgreen.org was setup by the parents of Nicholas Green (seven years old) who was killed during a robbery in 1994 while on vacation in Italy.

Parents Reg and Maggie Greenhad his organs donated and the effects are wide ranging and continue like dominoes.

Back to our story:
We still don't know what is going to happen now that there are no more (live family/relatated ) donors. There are stories of people feeling that this is what they need to do. I hope for one of those.
My current feelings are of despair. Mostly since I just got done reading stories related to organ donation and childhood illnesses or accidents.

.mmmm, great holiday reading.

If you have a conversation, please bring up the question if that other person is an organ donor. While your other party in the conversation may be surprised at the question, it may bring about a pleasant response.

I will be doing just the same and posting what I find out here on the blog. use the comments section here to post your responses. Share the link.

Obstacles....what obstacles?
About two years ago I got involved with our towns revitalization board. It was a reinvention of a past cause, so to speak. We have applied for a 501(c)(3) but havn't received the status yet. Paperwork you know. Well, it started out very fast and we were hitting hard but no fruit was being born of our labors. Times slow down ither things come up, but we kept going.
Last week, we received notice that our organization was given a $40,000 grant to purchase the last standing railroad station on the former Western Pennsylvania RR line. The money will go towards buying and renovating the station. It will then become our crown jewel of the revitalization board (we are actually the Burgettstown Area Community Development Corporation), BACDC for short. Once the building is purchased, people will then be able to realize it's for real. After the 501(c)(3)
is obtained we can then go after more bigger money to revitalize our downtown.
What obstacle...we had to endure years of scars and a "we ain't never done that before" attitude. So may people around here have sat on their proverbial thumbs up their asses and watched the town decay to it's present state. But when some intelligent enthusiastic people try to make changes to add prosperity, everyone runs to their holes (you pick the hole) and hides. I can't wait for spring so we can process this through the system and get this snowball in hell rolling.

What does that have to do with anything. It's the attitude stupid. Both sides of any coin have issues. But with this organ donation, I am trying to stay the path of the perseverance. My visions of grandeur have not faltered and I still see a BIG picture. Maybe my quest to actually donate my own liver didn't pan out, but there is still in issue with organ donation.

Thousands of people die every day. A scant percentage of them are organ donors. With my own Hemochromotosis I may need a liver some day. Perhaps a heart too. (But mine is pretty good already) LOL

Right now the US has laws called Informed Consent that assumes you will not be an organ donor when you die and it is up to the next of kin to make a determination or you can determine when you get your drivers license. Some other countries have Presumed Consent that says you will donate upon your death unless you choose NO and/or the next of kin removes the ability to donate.

Of course you can argue both sides (remember the coin). Of course I had very little care about organ donation until it was my turn to be a donor. Even with my long term organ health is in question, it has not changed my opinion of the matter. My family and I are all organ donors.

Some numbers show that a good percentage more people live because of the Presumed Consent laws in other countries.


Yes, I have become a crusader and I will try my best to fulfill that role.

Words that begin with "D"

Decision, Delayed, Disappointment, Dad, Dampen, Danger, Dark, Dawdle, Decreasing and Death to name a few.

Icould add Donor to that list too......but now there are none.

Donor #3 was removed from the list yesterday. It was a personal decision (their own) which "I" have a conflict with (big surprise, right). Donor #2 was removed as well but for medical reasons, as was I.

Donor #3 has a family conflict and requested to be removed as a potential donor. That reason is actually a legitimate reason the medical staff can remove someone from the donor list. Donor #2's decision was based on the limited capacity of the ability to provide care for their family during the tests and after the donation procedure. Which I can definately understand. It was an issue my wife and I mulled over as well.

But "my" issue is that the significant other is not even willing to let donor #3 undergo the tests to determine if donation is even possible. Many will say, "why go through the tests (time/money/false hope) then to pull out if a match is made".....well it is a very valid point. I can't answer that other than if a donation is possible, then the decision can be changed to actually donate.

Now, after my very disorganized (another D word) ramble above, I will try to gather my thoughts and post a more thoughtful and comprehensive blog post.

Okay, I took breath......but it didn't help.

My wife and I offered to put up donor#3 and the family in our house for this whole procedure. (tests through surgery and recovery) as well as food, car/transportation/air fare hospital visits......what ever it took. I also offered to help find employment, which there isn't any currently. That was a huge issue too. Lack of finances for them. Now or after. The option for them to move to Pittsburgh temporarily was floated as well. (I never did get a response).

Our contacts at the hospital pointed us in various directions for financial help. One of the big logistical issues was airfare. There is an organization called Angel Flight www.angelflightamerica.org. They provide free flights via private aircraft across the USA. In some cases, I understood that seats on commercial flights can be obtained.

One question from donor#3 was "who is offering to help?" [in reference to finaces] and the list was short, very short. It wasn't a selfish concern, but since there isn't any employment for them, it's a valid concern. The outlook for employment where they live now, is dim to bleak.

So, what now?

We wait to see if another live donor steps up to donate. But since the family of the recipient has been exhausted, it would have to come from a friend or stranger. Realistically, that won't happen. After that, the recipient has to wait until the health gets to a point where death is imminent. Which at that point, is it really worth it? The body may not be able to undergo such a surgery. Right now, it's healthy enough to survive and thrive (my opinion). In a year. Not so much. Two, three years...........I won't make any bets. But it's not uncommon to be on the donation list for several years. What would the standard of living be at that point? I guess as long as your aren't waking up in a pine box, it is pretty good.

I am not sure if I should mentally be preparing myself as this being the last Christmas and New Year with the recipient. Those of you that know the recipient, will have an issue with this mind set. I am sorry. But for me to be able to function with the current situation. It's what "I" have to do.

Voting ends December 8th

VOTING HAS CLOSED

I had three images accepted to a magazine. I mentioned the JPG magazine in a previous post. Now my images compete against all of the other images that were submitted. In order to get published, they have to be voted IN.

Basically, I have to "pimp my pic".

The images were submitted to the three themes for JPG issue 8. "Embrace the Blur", "Intimate" and "Tourist". If you decide to browse the other pictures to see what I am up against, or if you want to find one that is actually better then mine, there are some racy images that were submitted to "Intimate". You might see some boobies.

What's in it for me? Money and fame of course. Why else would I do this???? For love, yeah....right.

Send everyone the link to my blog. I would have you send the links of the actual voting pages, but that would be pushing it too far. I should just be happy you are reading my blog, but nooooo, I have to push the envelope.....must have more, must have mooooorrrrr.

If I am chosen with any of the below images, it will also help fulfill one of my life goals (I blogged about this earlier too), which is getting published NATIONALLY.
JPG magazine is available at Barnes & Noble and other large book sellers.

Click the images below to vote.
I'm not sure if you can vote for each image, but I am pretty sure you can. Since each image is in a seperate theme for issue 8.

VOTING HAS CLOSED

Looking back, seeing forward

It's December and I am getting ready to begin my 2006 year in review.
Last year I put together a vanity book of our own family's year in review. This year will be pretty much the same but I hope it's better.
I will begin reviewing the 30,000 images I shot over the past year and put them in a book to be printed in January.
It's a precursor to a project I am putting together for our town. I will be working with another pro photographer here in town on a two major projects. One is a directory/yearbook for our small town of 1600 people. I want to take pictures of everyone in town in their home and/or work environment. If they would like to submit a story for the "yearbook" then we would accept a small paragraph of what it is that they do or their view of the town. The other project is a "Day in the Life" book for our town. We are going to try and pick a day we can shoot for 24 hours straight in our town to see what it is that everyone does. We may also try and get other people, everyone or a handful, to shoot pictures for the book too. Part of the sales of this "Day in the Life" book will go towards the revitalization of our downtown area.
They are some fun projects that just need a little planning and some forward momentum. I can always come up with the ideas and the excitement. It's the follow through that I have problems with. It must be my mild ADD. LOL (Make sense though).

Gearing up

We are gearing up for Christmas this week. The tree is up with new lights for this year. It still has the eclectic mix of ornaments from handmade school ornaments to the really nice hand blown glass ornaments my mom sent us.

My wife will do a little shopping tonight and possibly this weekend. We have the lists all compiled. This is Dana's favorite time of year. My daughter is donating many of her stuffed animals to charity this year. Most of them are VERY new.

While the weather is going to run cold over the weekend, winter doesn't hit us until January. So we shall see how it goes these next few weeks.

To see it in print

I received my liver donor workup packet yesterday. It's a compilation of all of the tests I took over the three days I was at UPMC.

Without boring you with all the acronyms and results, of which most I don't even know what they are.....
These results may or may not be accurate. I am not a doctor, nor do I play one on TV. But I would if someone asked.

We had some fun reading the REALLY big words (which I won't repeat because you really had to be there).

Here are some excerpts right from the papers:
My Ferritin levels are "442". If I researched right, they normal Ferritin levels are supposed to be between 18 and 270.
"My heart is normal in size and shape."
"There is fatty infiltration of the liver without focal lesion."
"The spleen, pancreas, adrenal glands and kidneys are normal."
"My BMI is 31.9."
"Mr. [ ] is a very pleasant gentleman." (really, it's there!)
"His belly is round." (yes, that's there too)
"Testicles are down. Scrotum is normal." (I laughed so hard at this comment I nearly fell down)

"Status: donor excluded" (This was actually on teh first page, but I thought I would use it as a comedy killer)

There were a few other specifics. They type of liver disease my former recipient has and many more details of the tests that were done on me. Some procedures were also noted.

I have an appointment in a few weeks and will get some answers to my questions. I will post more about the specifics then.

If the above Ferritin numbers were accurate and I understood the results, then I have 2-4 times the amount of iron in my blood than a normal human being. And I always joke about the reason I am lazy is the lead in my ass. But in reality, it's the iron in my blood. WHO KNEW?!?!?

One up, one down, one to go

Donor number two didn't work out so it's on to number three.

Weekend Update

It was a very quiet Thanksgiving. I still cannot get used to it.

The blog went over 500 this weekend too. Thank you. Please share the link with others.

The second possible live donor has been contacted. I am now out of that loop but will still be blogging about the status of the recipient. There is a third donor lined up too.
After that, it's probably either a very altruistic friend or stranger or a cadaver.

Or none.........

It's not too strange for me to share my life with family and friends. I don't always get a lot of feedback either. Which, is both good and bad. I like to know that what I do makes a difference. Doesn't everyone. But sometimes, because I speak from my heart (which isn't always logical) I may mention things in a very direct manor
and it can rub the wrong way.

Lately, it has been exactly the opposite. I have received some feedback and to be honest, it has brought me to tears. I have always had visions of grandeur. This blog is no different. That is why I beg you all to share the blog and links with others. Looking at the numbers below, it's important.

First, here are a couple of things shared with me:

1) ..with you making the decision to donate part of your liver to your
father-in-law, you also were able to find out about the hemochromatosis. To
me this was a blessing in itself. You have helped more people in your family
to be aware of this condition that is hereditary. You are such a good
person...., and what you did was fabulous, and we are so proud of you.

2) ..it's a good thing you went through all this testing -- although
it's sad that you can't help [the recipient], at least you know you have some
housekeeping to attend to. With hemochromatosis don't you have to have
blood taken periodically? It would be a good thing for all of us to be
tested.

Now the requisite numbers for the week.

Waiting list candidates as of today 11:11am
All	94,126
Kidney	68,953
Pancreas	1,755
Kidney/Pancreas	2,401
Liver	17,077
Intestine	248
Heart	2,828
Lung	2,877
Heart/Lung	142
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - August 2006
Total	19,722
Deceased Donor	15,098
Living Donor	4,624
Based on OPTN data as of 11/17/2006

Donors recovered January - August 2006
Total	10,025
Deceased Donor	5,406
Living Donor	4,619
Based on OPTN data as of 11/17/2006

There are 17,077 people waiting for livers. When I started this blog in October there were 17,072. Only 5 livers added in a month. But there has been 683 people added to the overall list in about five weeks.

Granted, I have been on the liver train, so to speak. Now, it's everything, all organ donation. Livers and kidneys can be donated from a live person. But you can still be an organ donor in the chance that after you do die, your organs can help many of those 94 THOUSAND people.

Have I mentioned that even my 9 and 11 year old kids are donors.
One of our family friends who is about 12, received a kidney earlier this year. She is doing well.

Yes, it's a personal decision. One that when alive is pretty easy to make. For me anyway. But you MUST discuss it with your family. When you die, your family can change your decision and cancel out your status as a donor.

For those of you that are closer to me, genetically, PLEASE take the test.
Here is ONE of many resources pages on the internet.
http://www.americanhs.org/testing.htm
Or the next time you see your doctor perhaps to get a flu shot, or winter checkup, or just because you have nothing else to do but spend $25.00 on a co-pay, let them know that one of your relatives has been diagnosed with Hemochromotosis and you would like to be tested. Also share this blog link with them. Perhaps they can do the same with others.

Thank you for reading....
I'm Chevy Chase, and you're not.

We got our stories straight

Terri called me a few minutes ago. She is the donation coordinator for the recipients liver and of course mine as well when I was going through the process if becoming a live liver donor.

Now that I have hemochromotosis, I am out.

Back to the call.

She said that I have fatty deposits in my liver. The macro and micro kind. One kind can be adjusted by diet and exercise. The other I thought she said would not be affected by diet or exercise. The fatty deposits affect about 70% of my liver right now.

Of course, if untreated it could be bad news. But I will get a call Friday for an appointment to get the real deal on what my future holds.

Falling on deaf ears

Greta Van Susteren mentions on her blog today how her colleague Catherine Herridge is thankful because her son is alive (after a liver transplant). I mentioned it on a prior blog (Wednesday Nov 15 @ 5:29 pm).
http://www.foxnews.com/story/0,2933,231520,00.html

I sent an email to Greta via the public email address. Unfortunately she didn't read it, pass it on or get it. I am sure she get's thousands of email messages a day so I can understand.

Too bad she didn't have something like Dell's customer advocate. He emailed me within hours of me mentioning them and the six calls I had into tech support. BTW I have a few more in. Things are progressing. I still have a laptop that is in the process of getting fixed (I need to replace the hard drive (and re install all the apps)) YUCK!, and a backup device that isn't playing nice with Backup Exec v 10.d. (That upgrade has become a pain in the ass for sure). Symantec, do you have a customer advocate, are you listening?

What lies ahead

A few years ago I set out to put my (selfish) life goals on paper. Unfortunately I can't find the paper I wrote them on. Pretty ironic.

I do remember a few of them.
1) Get published
Newspaper (photo(s) or article(s))
Book (book, manuscript or short/long story)
Movie (yes a movie)
2) Travel to every continent including Antarctica
3) i need to find my paper..........

I have been to two continents (or three) with five (or four) to go. I always though there were seven continents. But as all things change, there are seven theories on the number of continents from three to seven. Six and seven continents hold the most water. Three and four are probably people that like to argue against conventional wisdom.

Being published. I have. Last year I got the front cover above the fold of the Washington Observer-Reporter newspaper. I wasn't expecting it for sure. It was a nice Christmas present.

I have been floating so many idea for a book it's dumbfounding. Granted I am no John Grisham so I have to take the non traditional route to being published. Its okay by me. This blog may be one of a few stories that are getting the most attention in regards to getting published.
Once the blog is converted to book form then published it wouldn't take much to adopt it to a screenplay and made into a movie.

I know, it's pretty pretentious (?) to think my life could be made into a movie. But who says it has to be made by Ron Howard? Hmmm, Jack Black could play the part of me. LOL

I am looking at resources to get a book published. Of course, I have to find a stopping point to do it. Not in life, just in this current liver-donation-blood-disorder thing I have going on right now.

Houston, we have a problem

Well, I am sure I mentioned the lack of communication in the past in reference to dealing with UPMC. Here's a little more.
Apparently my wife got a call yesterday too. Not sure if it was before or after my own call, which was around 2:00pm.
The call she got was TOTALLY different then the call I got.
Her information was that my liver was 70% affected by this excess iron in my blood.
My information was that if treated, I will be just fine. BUT if not treated, then it could end up I too would need a liver transplant.
I spoke to a doctor, my wife spoke to a nurse but is a coordinator. BOTH very capable just in a different position in the circle. I have seen both of them and so has the original recipient.

NOW, if it is true that my liver is in BAAAADDDDD shape then I guess this will take a bit of a different turn. If my liver is in good or decent shape then of course it's not a dire of a situation.

Back to Houston. A good trip going bad. Great communication results in a wonderful result.
(Referencing the Apollo 13 space trip).

Here in Pittsburgh, bad situation being muddied up because of bad communication. The results are yet to be seen.

I'm not dying

Contrary to some belief, I am not dying.
I haven't lost 70 percent of my liver.
I am doing just fine. All I need to do is eat better, exercise a bit and give some blood to bring the iron levels down to a safe level.

I got the second call

Waiting for a third.

I am not a viable donor.

I do have a blood disorder.

It can result in my own liver failure, heart disease, pancreas and diabetes.

It is called Hemochromotosis.

I got the call

I have some news, but am waiting for a follow up phone call that should come this afternoon before I can let you all know.

More facts and figures

Here are some stats from www.ustransplant.org

Center: University of Pittsburgh Medical Center (PAPT)
Organ: LI: Liver

Center Activity (01/01/2005-12/31/2005)	Center Data
Deceased donor transplants (n=number)	186
Living donor transplants (n)	36
On waitlist at start (n)	342
On waitlist at end (n)	338
Number of new patient registrations (n)	290
Transplant rate among waitlist patients	0.67
Transplant rate (from deceased donors) among waitlist patients	0.56
Alive on waitlist one year after listing (%)	22
Died on waitlist without transplant within one year after listing (%)	8.2

These are some sobering figures for me. Granted they are for the recipient whereas I am the donor.

One of the items that came up repeatedly during my psych visit was the very real possiblity for depression after I undergo the liver donation. Since this is an elective surgery for me, I will receive ZERO health benefits. On the contrary, my health will be in jeapordy. Long term issues have not been fully studied. Psychologically, financially, emotionally. Living donors currently become a bit of an after thought. If the recipient dies, and the numbers support that reality, then it will be all for naught.

I am trying to make sure that doesn't happen to me and if I can provide a path of information to others, they too will be able to make a better decision that will affect them the rest of their lives.8.2

More resources

I ran across this site from Mount Sinai regarding liver donation.
http://www.mssm.edu/rmti/liverdonor.shtml

It sounds like UPMC does their donor evaluations differently than all other transplant clinics. UPMC gets insurance approval then runs you (me) through the three days at one time. Most all other clinics you get the blood tests then wait for the results. If you pass then you go to the second day which is usually pulmonary, EKG, CT and X-ray. If you pass those then it's off to the liver biopsy. If you pass that and the psych and social then you are deemed viable. For UPMC, it's an all or nothing trip through the system. MSSM states an eight week process. UPMC does it in less than two. Depending on scheduling issues.

Out of the box

In a parallel comment line of my comments this weekend. I found this magazine at a big bookstore last night. http://jpgmag.com/ it is definitely not the usual mag/rag. Very little advertising (front and back pages) and a few sponsored features inside. It is a magazine about photos. Images. From the readers. Check out the site and see if the magazine is at the big box book store near you.

Doctor, it hurts when I do this....

Then stop doing that.

I am doing very well. On multiple levels.
My biopsy site is doing well except where the doctor tried to scratch my back from my stomach. So that is sore and only when I bend over. No problems picking things up, but I am aware to pick items up properly, you know, bend at the knees.

Mentally and emotionally.
There was so much stress on me with the series of tests last week, yesterday was the best I have felt emotionally and physically for several months. Lets see if I can keep on a roll.

Time waits for no man

We could hear as early as today or as late as Wednesday on if I am a suitable live liver donor.

As soon as I find out, I will let you all know here and in a mass email. I'm such a warm and fuzzy person that way......

What's in it for me?

PLEASE, read this article.
Leave a comment here on what you thought. Good, bad or unmoved.

http://www.kidney.org/transplantation/donorFamilies/newsDonorSister.cfm

400 hits, 94 thousand lives

I hit 400 views sometime today.
Thank you.

I was actually thinking if everyone sent the link to several people they know we could have been at about 1000 by today.

I could use some comments too.


Are you an organ donor? Have you told your family about it?

Waiting list candidates as of today 8:34pm
All	94,149
Kidney	68,950
Pancreas	1,746
Kidney/Pancreas	2,414
Liver	17,086
Intestine	245
Heart	2,841
Lung	2,880
Heart/Lung	141
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - August 2006
Total	19,719
Deceased Donor	15,096
Living Donor	4,623
Based on OPTN data as of 11/10/2006

Donors recovered January - August 2006
Total	10,026
Deceased Donor	5,406
Living Donor	4,620
Based on OPTN data as of 11/10/2006

Get out of your routine and take control

If I have mentioned this before. I will mention it again. If you haven't read it from me, it's new to you. Go here http://www.dooce.com/

Heather is the creative talent behind that site and her......view on life........ is something to behold.
In my mind she has incredible writing style. When I need a new view on something or an escape form my own local reality I head to dooce and get a different perspective. Heather is raw and honest. What more do you need?

Too many of us get into a grind that becomes just that. A GRIND. Wearing us down as we shed off parts. Get out of that routine. Try something just a little different or VERY different. Try a new sport. Learn how to knit. Write a diary for a week of EVERYTHING you see, say and do. Go back and read it. Put it away then a month later do it again.

Compare them. What do you see? A pattern.....a stagnation.....a GRIND.

You may not have noticed, but when I met with the UPMC shrink, she revealed a few things that are resonating with me. I didn't say anything else about that meeting.

Granted it's one persons opinion. But damn it made sense.

From her interview of me, I have two.....issues......?

ADD, yes ADD and a Control issue.

Who'd a thunk it.

No, I am not a risk to civilization and I don't even need medication. She actually called me "boring". But when she listened to my verbal ramblings and offered reasons, things clicked. I had an understanding of certain things in my life.

I didn't necessarily like what she said. There are labels for people with ADD and those that are controllers. But is still made sense.

I might get a second opinion.........

Night and the day after

7:30 pm I had gas so bad I ran my poor wife off the second floor. I was BAD!

8:00 pm I decided it was time for bed. We had already eaten dinner and I am tired. The Tylenol has worn off but I am feeling good.

<>

The Day After

11/18/06

early am I’m not sure what time it is. Probably close to 4:00 am. But it could be 11:00 pm. I won’t look at the clock. I could probably get up. I feel rested, but if it’s too early then this isn’t the sleep wake cycle that I want to be on.

The soreness at the biopsy spot has woken me up a few times during the night as I turn over in my sleep. It’s down to an ache. More like a bruise.

I try to go back to sleep.

8:00 am My wife’s alarm goes off at 8:00 am. I guess it’s time to get up. She falls back to sleep. I get up to go to the bathroom.

I was able to get out of bed fine. I have many thoughts of the surgery resonating through my mind. Mostly the recovery.

Mary Grace (the hospital Psych) was very concerned about post surgery depression for me, as a donor. She was also very concerned about at home care after the surgery.

My wife has been given approval to take time off after the surgery. But a schedule hasn’t actually been thought about. For me and my work the months of November and December are our slowest. There are few installations or travel during the holidays. But for my wife, this is their busiest time of the year. She has job security. I do not.

Once my test results are in (from these past three days) and UPMC determines that I am a viable donor. I will approach the CEO of the company I work for to see what my options are. Of course, I would like to be able to keep my salary as I undergo the surgery and recovery. Much of my work can actually be done remotely. They could have equipment shipped to my house and I could do what I need to do then ship it on to the customer. I won’t be able to travel for some time which is a part of my job at times.

If they won’t keep me, I am prepared to leave – on the spot.

8:30 am I decided it was time to pull the band aid off my pale white hairy Buddha belly. (There’s a visual for you).

I started to cut the band aid off with a small pair of scissors and wasn’t very successful. So I grabbed a corner of the band aid and RIPPED it off.

Ohhhhh, that hurt!!!!!

I have quite a bit of hair on my body. So yanking a band aid is like a micro waxing.

I see two spots that are scabbed over. One looks like where the two lidocain injections went in and the other from the biopsy needle. They are small with the biopsy spot the largest.

I was told they took out a pencil lead sized section of my liver. I don’t know if it was a #2 a .03, .05, .07 mm either.

As I feel the area around the spot. The sorest part is were the doctors finger was pressing very hard into my stomach.

Not the gift I wanted to give

7:30 pm I had gas so bad I ran my poor wife off the second floor. I was BAD!

8:00 pm I decided it was time for bed. We had already eaten dinner and I am tired. The Tylenol has worn off but I am feeling good.

A few small details to add

7:30 pm After dinner and the events of the day....they must have taken a toll on my innards. I had gas soooo bad, I ran my poor wife off the second floor of our house. Not sure if it was anything from the hospital since the only thing I actually received was the contrast via IV for my CT on Thursday.


8:00 pm The day has taken it's toll. I am heading to bed. Good night.

Discharge and home

11:30 am Pressing on my belly, it’s sore and tender. When not pressing on it, it feels achy and like I am very hungry. Then again, I AM hungry. Two pieces of toast and orange juice didn’t exactly fill my empty stomach. Especially mine.

11:35 am As I lay here, thinking about the surgery to come. I realize no one has thought to ask me what my pain tolerance is. Mine is pretty low and that concerns me.

12:00 noon I decided to live a little and headed off to the bathroom. It’s the first time I have actually sat up in four hours. Everything came out fine. I can feel a bit more pain as I move around sitting up, moving and such. But it’s definitely not a problem.

These hospital robes suck.

12:10 pm I have dubbed the guy next to me listening to infomercials as Mr. Angry. He is not in great health and he is also in for a biopsy. Unfortunately his blood work isn’t within tolerances so they won’t perform the biopsy. Now he has to wait to see if they can stabilize the blood but he needs food to do that and he can’t have food before a biopsy. It’s a vicious circle.

12:30 pm I am ready to go. Hungry for sure. I am also getting twinges of pain. Not debilitating but noticeable.

1:00 pm The nurse that has been taking care of me is kicking me out. She checks my blood pressure and says it’s time to get dressed. After I dress she goes over the discharge papers with me and noticed that the consent form is missing so she got another one. I signed it and noticed something that most people probably don’t see or care about.

But I do!

On the consent form was a photo release. I understand this type of a release. I have used them too. But after my go around with the UPMC media relations department (specifically Maureen McGaffin) and them denying my request. Well, I was pretty pissed off about this. Especially after I had to sign it.

We bugged out of UPMC and headed to Red Robin for lunch.

2:30 pm Lunch is over and we are heading back home. I can begin feeling more intense pain but it’s not really bad. We’ll stop and get some Tylenol.

3:00 pm I took 2 Extra Strength Tylenol.

Post procedure

9:27 am I was rolled down to 7 West by my original escort and I tried to convince him to head to the McDonalds drive thru for breakfast. He wasn’t going for it. I was left at the nurses station. We bid our good byes.

One nurse said she will get with me soon. I told her I wasn’t gong anywhere. “I will be here til Friday” “And don’t forget to tip your waitress”. I got several laughs from that one.

I’m on a roll.

9:43 am The lidocain feels like it’s wearing off. I am sure it isn’t but I feel that way.

9:57 am My hunger pains and the biopsy site aren’t exactly helping each other out.

I am bored laying on my back and it scares me to cough. I still have a light cough.

10:15 am I can elevate my head. Only three hours to go.

10:30 am My wife heads to the cafeteria to get me some scrambled eggs, toast, home fires and some orange juice.

She comes back with toast and orange juice. The cafeteria was closing and preparing for lunch.

11:18 am I guess my lidocain isn’t wearing off as fast as I expected. It is wearing off. But slower. I can feel the site getting bigger. Or at least the discomfort.

I'm going in

8:40 am Wheeled to surgical holding, 4^th floor by Jarrell (sp?).As we chatted and made small talk we laughed and enjoyed the ride. I was rolled through the public hallways, and I noticed that few people made eye contact when you are in a gown and on a bed.

The 4^th floor holding room has room for 5 beds, dimmed lights and faux wood flooring. Again was the always present hum of the fan. I was placed in the far corner of the room in slot 3. It was a busy place. There were three in the room when I arrived and in a matter of five minutes all the others were gone and a new patient had arrived.

8:50 am My hands are cold and I am getting more nervous as I sit here longer………….waiting.

It’s a different world down here. Life moves at a different pace. I can feel it. I can see it. Maybe it’s knowing what’s coming up next. Or. Perhaps it’s not knowing.

8:55 am A doctor came out. She wore dark blue scrubs. He spoke clearly with a medium accent that placed her heritage from Russia or that region. She checked my ID then told me my chart went back to 7West. She’ll track it down and get back to me.

“I’ll be here through Friday” I replied.

9:00 am My chart made it down to me in holding.

I’m sitting up in my bed and my butt is almost numb. I can’t wait to spend a week or two in one of these things. Yuck!

Although I probably shouldn’t have, I realize I need to get a different deodorant. This flavor isn’t working for me.

9:05 am They come for me.

9:10 am The room I am wheeled into is across from the holding room on the 4^th floor. It’s a typical hospital room but four doctors are in it. They are all busy, prepping equipment looking t the charts and explaining to me what will happen during the biopsy.

I am told it takes about 15 minutes to setup for a procedure that takes only a few minutes.

My robe is pulled up over my stomach.

The primary doctor is a young man very professional.

He uses the ultrasound to do an initial liver search. I am asked to breathe deeply and hold three times.

After I have been ultra-sounded another doctor cleans my stomach with alcohol and explains that it will be cold and have an odor. It takes her a while, I have enough to clean. She then wipes it with something else.

Both doctors lay sterile towels on all four sides of my stomach. Then they use a sterile cover on the ultrasound unit to probe once again. The doctor presses his finger to make a spot.

“You will feel a pinch” As the first lidocain shot is pressed into the spot just below my sternum.

The second lidocain shot is placed by the ultrasound and is deeper.

I can feel the needle press deeper into my stomach. It’s tight. Not necessarily painful but definitely not very comfortable. Okay, lied. I hurt. The doctor’s finger is pressing in as well. That I can feel.

"Take a deep breath and hold it."

“You will hear a click” I hear, as the biopsy instrument is pressed to my stomach.

CLICK and it’s done.

I didn’t feel the spring powered biopsy needle go in an out. But the docs finger needs to go!

They put a bandage on my belly and instruct me to stay lying on my back very still for the next hour. Do not lift my head do not move my lower body.

I am done with the procedure at 9:22 according to their clock