The end is near

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

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

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

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

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

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

I end with today's numbers:

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

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

Got liver?

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

News from around the world

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

There is always hope

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

Current numbers

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

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

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

Back in action

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

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

So, here's a nutshell update.

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

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

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

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

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

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

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

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

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

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

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

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

Kind of a strange irony.

How's this for a real causal effect

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

Current events

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

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

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

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

Melancholy funk

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

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

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

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

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

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

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

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

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

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

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

Neat story

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

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

That's soooo, cooool.

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. http://www.sportsshooter.com/news/1748

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.

Yeayyyy.

MIA

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.

1st Transplantiversary

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

A return to lucidity

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

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

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

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

I have been wrong before

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

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

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

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

Med updates

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

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

Med updates

I have been remiss in my updates for the recipient.

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

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

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

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

Good news

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

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

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

Weekend update

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

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