A new high

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

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

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

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

You can't get to heaven in an armored car

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

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

Close but no cigar

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

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

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

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

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

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

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

Med updates

I have been remiss in my updates for the recipient.

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

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

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

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

Punxatawny Phil ought to be skinned

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

Here is our forecast:
Allegheny County

SNOW ADVISORY…

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

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

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

Saturday night: A chance of flurries. Low 20.

Punxatawny Phil ought to be skinned

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

Here is our forecast:
Allegheny County

SNOW ADVISORY…

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

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

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

Saturday night: A chance of flurries. Low 20.

Up against the window

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

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

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

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

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

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

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

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

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

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

Thing I have learned

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

Words to live by

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


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

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

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


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

A word from our sponsor

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



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

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

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

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

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



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

Zoom zoom zoom

I am driving a VW Passat this week.

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

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

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

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

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


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

Philly

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

Back to Philly.

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

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

A-HA!

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

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

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

“You came back?” She squealed.

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

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

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

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

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

Quote Of The Day

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

Good news

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

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

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

An aftereffect

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

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

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

That was of course fictional.

Or was it?

Review no. 2 (BIG restaurant review)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cholesterol LDL , HDL or BDSL

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

Today is review day. No pop quiz either.

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

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

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

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

In the heart of a nation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Weekend update

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

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

Who or what next

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

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

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

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

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

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

Can't please everyone

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

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

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

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

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

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

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

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

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

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

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

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

Facts, figures and the future

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

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

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

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

Brutal honesty isn't something we shy away from.

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

What does that mean?

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

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

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

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

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

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

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

Next on the agenda

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

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

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

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

Organ donation in the news

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

Maybe I need to check my facts too?

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

When will this day end

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

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

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

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

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

This day started with a big fat "F"

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

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

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

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

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

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

"F*** !"I screamed!

Everything STOPPED.......

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

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

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

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

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

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

Not happy news

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

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

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

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

I wonder what the insides look like?

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

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

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

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

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

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

Quote Of The Day

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

Making progress

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

Cool stuff

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

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

HUGE stresses

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

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

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

A bond

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

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

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

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

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

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

On the road again

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

Anyway, he was on the move Saturday evening.

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

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

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

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

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

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

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

Scheduled for a move

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

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

Quote Of The Day

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

Back in the game

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


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

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

I Can Feel It

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

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

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

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

He's a fighter

Well, we warned them.

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

Ouch, that'll leave a mark.

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

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

Numbers for the week

Waiting list candidates as of today 8:16pm
All	95,142
Kidney	70,160
Pancreas	1,747
Kidney/Pancreas	2,388
Liver	16,976
Intestine	234
Heart	2,824
Lung	2,825
Heart/Lung	132
All candidates will be less than the sum due to candidates waiting for multiple organs Transplants performed January - November 2006 Total 26,691 Deceased Donor 20,493 Living Donor 6,198 Based on OPTN data as of 02/16/2007 Donors recovered January - November 2006 Total 13,582 Deceased Donor 7,386 Living Donor 6,196 Based on OPTN data as of 02/16/2007

Quote Of The Day

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

Wednesday Update

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

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

Afternoon Update

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

He is doing well.

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

Bed 14

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

Someone had died.

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

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

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

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

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

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

A Long Journey Begins

After making it into pre-op at around 2:00 am, he was wheeled into surgery around 4:00 am. His bad liver was removed by 7:00 am or so and his new (new to him) liver is being put in now (it's 8:14am).
It sounds like there are still several hours to go and he could be done just before noon today.

Of course once he comes out it will be straight into ICU for about a week. We don't know what the daily routine will be while in ICU. I don't expect it to be a lazy day at the ranch though. When I was going through the process to be a donor, they told me I would be up and walking by the second day or so. That's as a donor.

As a liver recipient, the process is so much more invasive. He will go through a significantly bigger process. I won't even pretend to know what will be happening. But I will post updates as the process goes along and as I learn of them.

If you want to sort of see what happens in surgery, head over to a real liver donor blog. Mike's blog (he has pictures). Some of his pictures are graphic ACTUAL surgery pictures. Lucky him. Our hospital freaked out claiming HIPAA laws. I wish they actually knew what HIPAA was about but that is their boiler plate response to anything. 'No you can't do that, HIPAA'....'Sorry, HIPAA'. Then again, maybe I don't knoew the datails about HIPAA..... but that's for another blog post.

Whatever!

I talked to my sister in law about 30 minutes ago. She's in Atlanta on her way here. She sounded like she has bee run through the ringer. No sleep. Nervous and having to deal with a so called red eye flight cross country.

The Time Has Come

Our first time slice was between 9 and 10 pm. Just under an hour ago we were pushed to between midnight and 12:30am.

We don't have 100% confirmation, but it was understood that the donor has passed away.

I should get a call from my wife in an hour or so as to whether or not the surgery is a go. Even then, it could be several more hours before the first cut. And then again, once they are inside, things can be stopped. I will post once I get any more news.

Playing the waiting game

It's 5:00 pm now and he is undergoing medical tests.

There is no other word except that.

We don't know the status of the donor either.

We aren't sure if it's a go ahead or if it's a stop.
Hopefully, we will know in a few hours, but since the process started late this morning, we may not know anything until late tonight or tomorrow. I really just don't know what the timeframe is with this type of situation. Nor do I know what to expect.

It sucks not knowing anything.

Ball of emotions

We...he...got a call.

"My" former recipient...has been called by the hospital. They might have a liver available.......

Right now, there is a possible donor. It's not a live donor, so to speak. But as of now he hasn't passed away either. Well at least as of a few hours ago when we first got the call.

It is actually really very difficult to think about. Someone is dying, and someone might have their life extended. It is really very emotionally troubling.

I just got another call, the hospital wants him there NOW.

The reality is, that once he gets there things can slow, stop or reverse. But it's still a step to move forward.

On pins and needles

I hope to have some news for you in a few hours. But until then.....I can't tell you what's happening. Either way, it will be interesting.

Valentines Day is National Donor Day

I found out this weekend that Valentines Day isn't just for Hallmark anymore. It is also National Organ Donor Day in the US. It's on Valentines day for a reason.

"National Donor Day was started in 1998 by the Saturn Corporation and its United Auto Workers partners with the support of the U.S. Department of Health and Human Services and many nonprofit health organizations. " -organdonor.gov

I am actually quite disappointed for a couple of reasons. First is that I didn't know it was National Donor Day. Second, was that no one else knew it was National Donor Day. Third, that no one told me it was National Donor Day (see #2).


I actually found out by reading Becky's blog then I also read Joshes blog. Josh knew, but Becky found out after the fact. Now, here I am, almost a week late.

.sigh.

Quote of the day

"The gene pool could use a little chlorine."

Where is my compass

Normally, I try to plan things out so as to cover anything that might arise. Of course, I don't get it all right all the time. Heck, I probably don't get it right even part of the time. It's probably more that I think I am in control, yet nothing is controllable.

When I was starting on the journey of being a liver donor I know I was going to document the process in some fashion. I thought about keeping notes, then a book, then the blog now it's the blog that will be a book. I wanted to keep it on the blog rather than a www.yourwebsite.com thing. I thought having the blog would be a better way of keeping things simple. Then when the newspaper thing never materialized, I decided to photo document it myself. That's where the flickr site came into play. Honestly, I didn't want the photos on the blog for some reason. Again, it might have been simplicity. I wanted the flickr site to be photos only and the blog to be words only. When I put together the business cards I only put the flickr site on the card. Of course, from there, you can see the link to this blog.

Lately, I think in my attempt to be simple, I have seriously undermined that attempt and harmed my desire to be legitimate as well. Now I know the blog is fine, but by separating them into two very different objects, I think it has caused a serious division and of course, has ceased to be simple. I now have two sites to update (technically three when you add in the wordpress mirror of the blog).

.sigh.

I get to live my dream

I was telling my daughter good night and she asked for a hug.
While we were hugging, she asked if we could do this all day.

What winter brings in

There is about two or three inches of snow on the ground. It started late last night as a trickle. or more like a flurry. It was very light almost like winter fire flies as the snow flakes were lit from the street lights.

This morning, it appears that few of the roads have been taken care of. The area has been expecting this snow storm to come in for a few days now. So I guess they are all waiting for the now to be real deep then they will put out the plows and the salt. Oh well.

Since the it was so slow in going. I decided to pit stop to see if I could get my hair cut. Lo and behold, they were open.

I gave my name and the stylist said it would be a minute.

It was chilly in the salon. I don't get cold much, but I noticed it soon after I walked in the door.

It was my turn. I sat down and the stylist turned my collar down to put the nifty white paper necker on me and asked how I wanted my hair cut. "3" please. "Are you sure?", "it's pretty short". Well, I am pretty sure. I rarely get my hair cut and i know it's more of a summer cut, so let's go with a 3.

She again offered to start with something longer just in case. But heck, it's only hair and it will grow back. Besides, I ALWAYS wear a hat.

She snapped on the #3 and I heard the buzz of the clippers. She pushed the clippers to my head and in one fell swoosh, I was flashing back to my first military hair cut. But back then, I was the smart ass of the group. I asked if they could just take a little off the top. To my surprise, he did only take a little off the top. He just didn't stop until it was nothing but stubble and skin.

Back to the present. I can feel a cool breeze on my head as my hair is getting shorn off in large clumps. Hmmm, perhaps I should have started with a longer cut. Oh well, too late now! She continued to cut away all of my hair around the base of my head. Boy, that looks short. I think the last time I had it cut was mid summer or early fall so it's about time anyway.

As she was busily working on my locks, I jumped right in and asked if she was an organ donor. "Yes I am" she replied. We talked about her family being very giving. Being an organ donor was something she definitely believed in. Her mom....not so much. She thought that if you are in a coma, the doctors wouldn't save you so they could get the organs.

I went on to say that while it is possible, after all, the systems is being run by humans and we are NOT perfect, it's not real probable. There are just too many risks and other moral and professional issues that doctors face when in that situation. But boy I hear it so often.

My cut was done and I was paying. I handed her my card and asked if I would be able to take her picture for my project. She was just as enthusiastic as when we first started to talk.

Of course, you can see the portrait of "S" on the flickr page here. She has incredible brown eyes and great lips. As we talked, she mentions that she changes her hair color often. I was able to see the brown with highlights. But she has done other colors like blue and red.

As always, I am grateful for the time people spend with me. She was fun to talk with and I can only assume she has many stories to tell, from a stylist point of view.

The payback

I was leaving work about 9:30 tonight wondering where or how I could get to talk to a person about organ donation. It's late, a winter storm watch is in effect. (It was downgraded from a warning). So I thought I should stop and top off the gas tank. You know, you should drive on the top half rather than the bottom half.

I pulled into the local corner gas station/convenience store and swiped my card. Selected the cheapest octane fuel to put into my beater. I can't really call it a car, but it is my current mode of transportation. The speakers were blaring out Abba and the Bee Gee's. I even looked at them in a bit of disbelief to hear the sounds of the 70's.

I gripped the cold metal handle and noticed it felt slippery. No, more like there was a film or substance on the lever. It was probably the salt spray from the various cars that pull in. Or it could have been the windshield washer fluid that they use to clean the windows. Either way, I squeezed as much life out of the hose to fill my steed.

While the fuel was flowing, I looked around. There was a white car across from me as I was facing. The guy had a leather jacket on, but was not interested in anything but his eventual destination. Next to me in the same lane was another car, but no occupants. They must be inside. They could be getting anything from donuts, to hoagies to motor oil. Beyond my neighbor was a yellow cab. The cabbie was dutilly cleaning the interior glass. I thought that was nice that he took the time to clean and squeegee the inside windows.

Ker clunk! My tank was full and I was pulled from my observations abruptly.

I too sought out a squeegee and took to my own windows in an attempt to rid the beast of it's salty film.

As I made it around the car and finished my own windows. Everyone else had filled and went their own ways. But the yellow cab was still there. Cleaning. Taking care. I started up the engine and looked for a spot to pull into so I could approach the cab and it's driver. As I was parking, a man walked out wearing a kilt. He would have been a great person to talk to. But I wasn't fast enough to get out. He was in his own car on on his way.

I grabbed a card and walked back to the fuel aisle to talk to the cabbie. He wasn't a big buy, but he was bigger than me. I noticed he was wearing green shirt and dark outer coat. But what I thought was the stand out was his short dreadlocks. Or at least what I identified as dreads.

I approached him as he was cleaning the passenger side, rear windows. He didn't even slow down. I passed my card and asked if he knew anything about organ donation. He didn't then I asked if he had some time to talk about organ donation.

I didn't hear his first response. The 70's were ringing in my ear. But I leaned in and he did say it was against his beliefs. I appreciated his candor and it piqued my curiosity. He went on to say that the body should depart whole. But he did add that he donated blood that was able to save his daughters life.

Blood is a renewable resource. It was therefore acceptable. I was really enjoying my conversation at this point. I again expressed his honesty and I reiterated that I was there to talk about donation and not change minds. Hopefully he can talk about it and his own reasons with his fares or his family. We walked around the cab. Cleaning then wiping up. Probably as much for him as for his fares. He wasn't so meticulous that it hurt to watch, but he wiped the excess off the black vinyl so it didn't look messy.

I tried to stay close, since I couldn't hear him too well. But still trying to stay out of his way. He went on to say he was an entertainer. He and his friends have done some musical creations for a few large companies in the area that I recognized. I could see that portion of his life brought him great joy. He smiled big when he spoke of his daughter and his music.

As we were each departing on our own directions, we reached out to shake hands. "J", it was a pleasure to talk to you.

Perhaps he will drop me a line for a portrait some day.

Quote of the day

"I see grade-school-age children say goodbye to their fathers who are dying because no donor hearts are available." - Brooks S. Edwards, M.D.

Some fears have realistic issues

I posted earlier that one of the most common fears people have when deciding on becoming an organ donor is if they are in an accident, that they will be allowed to die so that their organs can be harvested. Here is an article from the Cleveland Herald-Dispatch that sort of addresses that issue.

A few more numbers

I was on the CDC website and found these numbers on deaths from all causes (the link is a PDF file). I pulled out a few that most would recognize. These are TOTAL deaths as reported and gathered by the CDC.

The OPTN data (from UNOS) that I cite often on this blog is specifically based on organ donations and those that are on the transplant list. As you can see, with the 6,000 deaths OPTN data) I have reported in the past, there are actually over 26,000 (CDC data) that die just from liver disease. The 6,000 (estimated 17 every day) are those that are waiting for an organ.

Disease 2004 Deaths

Heart disease:	654,092
Cancer:	550,270
Diabetes:	72,815
Influenza/Pneumonia:	61,472
Motor vehicle accidents:	43,947
Liver disease:	26,549
Homicides:	16,611
HIV:	12,995

It is not humanly possible to save every life. Nor can every life be extended. I bring up the numbers more to aggregate the law of averages. Eventually, you will experience one of the above issues. Either in you, your family or a close friend.

Organ donation will not help many of the above health issues, but some of them it will directly affect. PLEASE, be an organ donor and talk to your family about your wishes.