Monday, April 30, 2007

Cat's out of the bag

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

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

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

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

Where does the future lead?

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

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

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

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

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

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

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

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

What have we lost?

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

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

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

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

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

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

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

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

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

It was met with incredible hostility.

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

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

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

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

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

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

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

Wednesday, April 25, 2007

Back, but for how long

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

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

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

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

Friday, April 20, 2007

Quote Of The Day

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

Thursday, April 19, 2007

Where to draw the line

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

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

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

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

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

Friday, April 13, 2007

Quote Of The Day

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

A New High...or a low

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

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

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

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

Thursday, April 12, 2007

Project Progress

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

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

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

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

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

My journey, my view.

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

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

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

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

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

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

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

Quote Of The Day

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

Wednesday, April 11, 2007

Med Update

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

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

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

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


Tuesday, April 10, 2007

April is National Donate Life Month

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

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

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

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

Wednesday, April 04, 2007


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

What has changed?

Not much.

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

PA State Commonwealth employees, sheesh.

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

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

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

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

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

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

Quote Of The Day

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