From Today's Atlanta Journal

Online campaigns raise funds for transplants

By KAREN HILL
The Atlanta Journal-Constitution
Published on: 09/19/05

Chris Barr of Richmond Hill is an accountant who likes to play poker. He needs $100,000 for a new kidney. Jeffrey Evans, a Duluth chef who likes to hike, hopes to get $75,000 for a heart. Stanley Harris Jr., a 3-year-old from Decatur with large brown eyes and a shy smile, is looking for $55,000 for a kidney.

So it goes, as national charities turn to cyberspace to connect those needing transplants with people willing to help them pay for their surgery and care afterward.

RENEÉ HANNANS HENRY/Staff (ENLARGE)
Nancy Larson, who received a kidney transplant this spring after raising money for it on the Web, lives in Decatur with her daughter Sasha, 7.
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The money they seek is only what they need to get started. After-surgery care alone can sometimes cost more than $100,000 a year, and often, those expenses are not covered — or are only partially covered — by insurance.

It's common among the 247 transplant centers nationwide — including Emory University Hospital and Piedmont Hospital in Atlanta — to keep people off waiting lists for transplants until those people can devise a plan to pay for a lifetime supply of anti-rejection drugs.

The phenomenon sheds light on how medicine is outpacing insurance. Transplant patients are living longer, but it's expensive. Raising money online concerns one of the nation's leading bioethicists, who wonders whether the Web sites redirect resources from those who are sickest.

"Not everybody has a case to tell that's going to be publicly appealing," said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania.

"If I don't have three children, haven't got pets, am I less deserving of a shot at a kidney or a piece of a liver?" Caplan asked.

Transplant hopefuls say the sites, which are run by national charities, are saving their lives.

Nancy Larson, an architectural sales representative from Decatur, used one of the Web sites, operated by the National Transplant Assistance Fund, to help raise $33,000 before she received a new kidney this spring at Emory University Hospital. She also received help from the Georgia Transplant Foundation, which raises money online, but does not post pictures of people needing help.

"I was very uncomfortable to think I had to solicit money," said Larson, who is recovering well. Still, "Who doesn't want to keep living?"

Larson said the donations helped her through a dark period of daily, nearly daylong dialysis.

"It's such an affirmation of the kindness of humanity that people will reach out and help," Larson said.

Providing Web pages for individuals is a relatively new function for three nonprofits, the Memphis-based National Foundation for Transplants, www.transplants.org; the Philadelphia-based National Transplant Assistance Fund, www.transplantfund.org; and the Bloomington, Ind.-based Children's Organ Transplant Association, www.cota.org.

The nonprofits post information only about people whose need is hospital-certified. They pay bills directly to hospitals, doctors and pharmacies. Donations are tax-exempt for donors and recipients.

The National Foundation for Transplants and the National Transplant Assistance Fund keep a fraction — 4 percent or 5 percent — of what each person receives in donations. Charity Navigator, which rates charities for effectiveness, gives them good grades.

Visitors to these Web sites can scroll by state, alphabetical order or type of transplant.

The text accompanying each picture can be matter-of-fact and brief. Sometimes there are personal comments, or links to personal Web pages, that provide heart-wrenching glimpses of a fight for life.

There's this, from Leslie Courtney, a radiology student from McDonough who needs $25,000 for a lung transplant at the University of Alabama at Birmingham Hospital:

"I was her maid of honor, and because of this unexpected hospital trip I was unable to go to the wedding and be there by her side ... I was devastated."

Courtney's best friend and new husband left their wedding reception early to come to the hospital, where a chaplain performed the marriage ceremony again, with Leslie by their side, in her bridesmaid's gown.

Lisa Williams, a stay-at-home mom from Kennesaw, who needs $100,000 for a heart transplant, shared what happened just before she learned how sick she was:

"My attention was drawn away [by] the sudden chill that filled my body ... I had my first cardiac arrest and died. Ken [Williams' husband] vividly recalls how he walked in the room and found me lifeless. He started performing CPR ... turning between breaths to scream for help."

As moving as the stories are, the Web sites raise concerns for Caplan, the bioethicist.

He questions how closely the nonprofits check the biographical data posted and said a donor may be sending much-needed money to someone who has become too sick to survive a transplant.

Caplan saved his harshest criticism for the hospitals — including the one at his university — that start patients on this money marathon.

"The first test you [have to] pass is the 'wallet biopsy,'" Caplan said.

Dr. Tom Pearson, co-director of the kidney/pancreas transplant program at Emory, said patients must be realistic.

"There's no point in putting you through surgery and hospitalization," Pearson said, "if you don't have a plan for the meds."

Anti-rejection medicine can range from $10,000 to $25,000 a year. Adding doctor visits and lab work to those pharmacy bills means someone with a new kidney will pay, on average, $60,000 each year after surgery, said David Bakelman, executive director of the Georgia Transplant Foundation. Someone with a new heart will pay an average $120,000 a year, Bakelman said.

Pearson said no one has died because Emory wouldn't put him or her on an organ waiting list. The point, he said, is for a transplant hopeful to make a plan, not to actually raise cash.

John Monogue of Decatur said he and his wife, Jodi Monogue, a legal case manager, left a meeting with a hospital financial counselor with a different impression.

They were so convinced they needed to raise cash that it took them just one week to do so.

"We went nuts with a large e-mail campaign" that brought in pledges for $3,000 a month for postoperative medicine, John Monogue said. Jodi received a new liver this summer and is recovering at home.

Bakelman, of the Georgia Transplant Foundation, said Emory's policy reflects the hard fact that there aren't enough donated organs for everyone who needs one.

Caplan, the bioethicist, wasn't buying those arguments.

"I think that the [medical] centers want the money," he said, "and there are enough people who can pay that they can get away with policies that require up-front payment."

TO LEARN MORE

... about each charity, go to charitynavigator.org, an independent charity evaluator.

Charity Navigator gives the National Transplant Assistance Fund four stars, its highest rating. The National Foundation for Transplants gets three stars, the median rating for 260 health charities.

Charity Navigator hasn't rated Children's Organ Transplant Association because, until recently, it was too small.

Blog Updating

So I am not the best at keeping my blog up-to-date. I try to update it frequently but sometimes I am super busy and sometimes I have writers block. I can understand other people that dont keep their blogs up-to-date but it still saddens me when I go to one of the blogs I regularly read and see that it still has the same message from early August. No names mentioned, of course... But surely something has happened blogworthy in the last 6-7 weeks.

One blog I read gets updated several times a day. That is a little bit crazy if you ask me.

So with that said, here is my update for the day. We planted some vegetables in the spring. Tomato, squash and jalapenos. The tomato plants died back and were replaced. Ditto for the peppers. The squash started out strong, had some blooms and then died without producing the first baby squash. The tomatoes are doing well; too well. I dont like raw tomatoes so that makes it even more fun. I like to make and eat salsa and tomato sauce. We planted herbs but they are looking pitiful due to neglect. Soon we will have more peppers than we will know what to do with them. The plant has blooms and babies all over the place for the first time this year.

My parents raise a lot of fruits, berries, and vegetables. Dad grew up on a farm and likes to do that kind of thing. I like getting the fresh stuff when we go to visit or they stop by. You cant beat fresh fruits and vegetables.

Speaking of farms, I have a friend that has chickens. Not in a big chicken house or anything like that. His chickens are in the back yard of his urban house, clucking along and playing with his dogs. I find it hard to believe that his dogs and chickens get along but they do. He had talked about getting rid of the chicks. Maybe I should call him up and go see if they are still there.

Traveling?

I love to travel. Next week I am planning a trip to Savannah for business. The only problem is that it is a pain to take all of my dialysis supplies with me even for one night (as this trip will be). It is worse when traveling for longer periods of time. If I am staying somewhere for a longer period of time, then the company that delivers my supplies delivers them to where ever I am staying. Then you worry about did it get there, did the people at the hotel sign for it, and a hundred other things that pop into your mind that could go wrong. My main regret is that the wife cant go with me next week.

More on the Movie Premiere

Yesterday was the fourth anniversary of the attack on the World Trade Centers and the Pentagon. A friend of mine had a relative on Flight 93. You may remember that was the flight that was also hijacked but the passengers fought the terrorists and instead of the plane crashing through the Capitol in DC, it hit the ground in a field in Pennsylvania. Last week, the wife and I went to a premiere of a movie called "The Flight that Fought Back" with the friend with the relative on the plane. The movie was made for the Discovery channel and was aired there last night. At the premiere, it was only family and friends of the passengers and crew. I should have blogged about this earlier but have been kinda busy this week. I hope many of you were able to see the movie last night. I liked it a lot.

Idiot of the Day

Last week, the wife and I were coming home from a movie premiere. We were stopped at a light. When the light changed green an SUV heading in the opposite direction decided to swerve across two lanes, directly in front of a police car that had been stopped at the light, too. I guess the driver of the SUV wasnt paying attention but I am when those blue lights came on that got his attention.

Disappointed in Humanity

I have been upbeat about the human race when I see things like people donating organs to people they dont know but yesterday I witnessed something that really disgusts me.

It all began with a story in the local paper yesterday talking about damage done to the pipelines that bring gas into this area. The story, if you read it, said that if the pipelines were to be completely destroyed that we would still have enough gas for at least two weeks of normal use, but this wasnt the case and everything is fine. By the end of the day, people were emailing each other, in a modern adaptation of the old telephone game, that we were out of gas and rationing was coming and stations would be closing early.

So consumers flocked to gas stations and gas station owners greedily decided to stick it to their customers and started raising the prices. I personally saw gas over $4 a gallon. The national news showed stations in the area pushing $6. One station owner on the news said it was his station and he would charge whatever he felt like charging. The sad part to all of this is that it was perfectly legal for them to do this. Luckily the Governor FINALLY acted and made it illegal to do this.

Meanwhile, hotels in Texas where hurricane refugees have fled to are suddenly learning that their hotel rates have doubled and tripled. I thought as Americans that we are supposed to be better than this but I guess I am wrong.

The following story ran in today's Macon Telegraph.

Gas price complaints investigated

By Liz Fabian TELEGRAPH STAFF WRITER

After paying more than $4 a gallon for gasoline Wednesday afternoon, irate customers returned to the Express Food Mart at 701 Eisenhower Parkway asking for some of their money back.

The lighted sign read $2.98 when one man demanded a partial refund with two receipts showing he paid $4.29 a gallon earlier in the day.

The customer, who declined to give his name, walked out with a refund of $44.54 and got into his Volvo station wagon that was loaded down with five new 5-gallon gas containers.

Macon police Lt. Marquette King said officers investigated reports the price was more than $4 a gallon, but the responding officer said that wasn't true when he arrived.

Even if officers had found the higher price, they could not have issued a citation because Georgia's price-gouging statute was not enacted until later in the day.

Kent, the co-owner of the convenience store, who would only give The Telegraph his first name, said his staff had a problem changing the computerized sign during the day.

"It was an accident and it won't happen again," he said.

But before the owner arrived, store worker Calvin Denmark blamed the high price on the Citgo gas company, which he said independently sets the price for the store.

"It's been as high as $4.69," Denmark said.

But the owner later said the price never rose above $4.29.

Customers told a different story.

Regina Montgomery of Thomaston said she was in line for gas when the price jumped from $3.59 to $4.99.

"I was like, 'Did you see that?' to the people in line and they said, 'How can they get away with it?' " Montgomery said.

It cost Montgomery more than $50 to fill up her Toyota Camry. A check of her receipt showed the price at $4.29, she said.

At the Eisenhower Parkway Dialysis Center next door, employees said they watched out the window as the price on the sign continued to rise.

Rosalind Hodges, who works at the center, said she saw the sign reach $4.99.

Jerome Villarreal, who said he was the gas station owner's nephew, said his uncle wasn't trying to cheat anyone.

"My uncle's a good, going-to-church man. He's not fixing to take anybody's money," Villarreal said. "It was an honest mistake and he's given people their money back."

Editors note... "Honest mistake"? You call ripping people off an honest mistake? Not "fixing to take anybody's money?" Isnt that exactly what he did? My advice is to remember which stations did this to people and dont go back there ever again.

Cellphones

I use my cellphone a lot. I mean really a lot. Working for myself, my phone is my office. There are a few things I will not do but I see people doing with their cells all of the time.

1) Bathroom talking. A few weeks ago I was at the mall and went in to the bathroom. I had just stepped up to the urinal when I here a voice say "Hey man, how you doing?" I look around and determine that the voice was coming from the stall. The guy kept talking but it was also very clear that he was doing some work in that stall if you know what I mean. Whoever he was talking had to know what he was doing while talking.

2) Taking calls in the middle of meetings. I have to have my phone on at all times in case the hospital calls with a kidney match. I have my phone set to vibrate and if it rings I pull it out, see who it is and send it to voice mail. If it were to be the Hospital, I would excuse myself from the meeting and go return the call.
Last week I was at a meeting. There was about a hundred people there to listen to 3 companies make presentations. One person in the audience kept receiving calls the entire time. Her phone was not on vibrate. She would answer the call and talk in a NORMAL voice to whomever was calling her. People around her had difficulties hearing the presentations when this would happen but yet she kept doing it. And the calls would be whole conversations not "hey I am being extremely rude to talk to you in such a public forum. Let me call you back at a more appropriate time..."
I hate when people talk on their phones during a movie, too.

3) Phone headsets. I have a bluetooth phone and am trying to use the headset when driving. I was at another meeting the other day and somebody was wearing an old headset throughout the entire meeting even though they werent using the phone. Think late 1980's Garth Brooks touring headset and you have an idea what she looked like. Like she was a cyborg or something. My point is that it is ok to use the headsets to talk on but do you really need to leave it on all day?

News Tonight

Was watching the local news tonight. They had a story I tried to find a link to the video but couldnt so I will just have to tell it.

A woman decided two years ago that she should give a kidney to someone but didnt know anybody that needed one (she didnt even know anyone that had EVER had kidney problems). She kept feeling strongly about this but didnt know what to do. Earlier this year, she interviewed a woman to work in her real estate company. She asked if the woman would be available on weekends (kinda important in the real estate industry) but the woman said no because she had to look after her sick husband. "What's wrong if you dont mind my asking?" She learned that the woman's husband had a heriditary kidney disease and needed a transplant. The woman met the man pretty soon and underwent the tests and found out she was a perfect match and 2 months ago the transplant occured. They both are doing well. The donor is even giving 10% of her commissions (I didnt hear for how long) to kidney disease research.

I am glad to know that there are people like this woman and people like my potential donors.


Editor's note... Just found the link here to the video of the story if you are interested

Look what I found

Sunday I went to look at Southern Living's model home. It has a lot of new things to help make the house more environmentally friendly and supposedly cheaper to live in. It is a beautiful craftsman style house with a spectacular view of Atlanta. What they dont readily tell you is that the other houses in this subdivision or running $400-$500k but the super-eco house would cost $1.2 million to build.

But the best part of the day is that I found a gas station that was selling gas for $2.35 a gallon while most stations near us were $2.60 or more. WOW!!!

All I needed to Learn...

One of the most inspirational people in my life was my fourth grade teacher. She was more of an adopted grandmother than a teacher. She taught us some arts and crafts as well as multiplication.

When I was around 12 or 13 she gave me my first job. It was cutting her yard. It was a pretty good size yard and took a couple of hours to do it. Usually she would make me a sandwich when I got through. Turkey with mayo. Sometimes she would make me two. I think about her just about every time I eat a turkey sandwich even to this day.

She is responsible for a couple of other things in my life, too. To go along with the turkey sandwich would be a Coke (usually from a small bottle because she said they were better) over shaved ice. She had this old contraption on her covered porch. "What's that?" I asked. "It's an ice crusher" and then she showed me how it works. You put ice in the top and then crank the handle to crush the ice. I always had to have crushed ice from that time on and even today, I prefer crushed ice to regular ice cubes.

Growing up my parents didnt use many spices. My adopted grandmother/former teacher turned me on to spicy foods via cheese straws. For her cheese straws, she added extra garlic and red pepper. I have never had any cheese straws that I like as much as I liked hers but I have looked. She would make me cheese straws at least once a year. She would give my family two batches, one for everybody else and one extra spicy for me. I wish I had gotten her recipe.

A few years ago she died. I was sorely disappointed with the funeral. The main pastor of her church decided he didnt do funerals so junior minister who had never met her lead the service. Instead of words of comfort and memories of her, we learned how the minister met his wife and what he did before becoming a minister. He spent almost an hour talking about himself like he was the one being honored.

Anyway, she had a great impact on my life and helped to mold me to whom I am. I think about her often.

What did he mean?

As I have posted before, the wife and I like poker. We like to watch it, read about it and play it. Several months ago while in Vegas I got my first autograph of a poker professional. Since then I have built up quite a collection including the living legend of Poker, Doyle Brunson. Yesterday I got an autograph in the mail of Atlanta poker pro (and winner of 2 World Series of Poker bracelets) Josh Arieh. It reads "since I moved away its your job to hold down the SWATS!!" I have spent yesterday and today trying to figure out what that means. 1) He hasnt moved away from where I live (we are probably 15 miles apart) and 2) What is a "SWAT"

Maybe I dont know enough poker lingo and it means Have a Nice Day. Or maybe he was doing multiple autographs and got mine confused somehow with someone else.

Speaking of puzzling writings.... When wifey and I got married 2 years ago, we had at our reception a couple of photo mats for people to sign. An old friend of wifey wrote my wife's name and DONALD and then crossed out Donald and wrote in my name. I keep kidding my wife about Donald. Anytime she says, "you remember the time we..." I always say, "No. That must have been Donald..."

Our dogs

Wifey and I have 2 dogs. Mine is a Australian Sheperd Mix with one blue eye and one brown. He is the most laid back, friendly dog.

Wifey has an Australian Cattle Dog/Terrier mixed. She is really high strung but still a sweety.

Both dogs are Herding Dogs. They are very protective of their herd (the wife and I) and are cautious about letting new people, especially men, into their territory. This is very true of the wife's dog.

A truck goes up the street and the dogs will go crazy. Doorbell gets rung and the go nuts. When door to door sales people ring the bell you should see them react when they hear the dogs barking and growling. The best story is a couple of months after we got wifey's dog, a door to door salesman was at the door. When I opened the door the little dog ran out and then peed on the salesman's shoes. It was way too funny.

The other day, wifey's dog discovered the fireant bed in our back yard. They attacked her nose, cheeks, and back legs. We had to take her to the emergency vet in the middle of the night (wifey actually took her since I was hooked up to the dialysis machine). They gave her a couple of shots and she is all better now.

Oh well, I think I will go play with the dogs for a little while.

Wildlife

We live in an area that is just 15 minutes from a major city but we are in a quiet, wooded subdivision. When we first moved in we had a deer go running through the woods behind out house. He was a big buck.

We have had geese come to visit us, too.

Last week we had a hawk sitting on our fence. He was soooooo beautiful.

Big Update

I am getting closer to the transplant operation. About 5 weeks ago, 2 potential donors and I had blood drawn in the same day to have crossmatching tests ran. They both are matches (technically they both tested negative to antigens in the blood that would cause them to not be matches for me). I have talked with both but have never met either one of them. The next step will be for one of them to go throught the 2 day evaluation I did back in the first part of the year. More details as I know them and can share them.

Tickets Please

Friday, President Bush was in town for a town hall meeting. I was there. I think I have been to 15-20 presidential visits. No matter the person, the respect for the office makes it an enjoyable experience for me to go to. This was my first post 9-11 one to go to and I found the security a whole lot tighter than I remembered.

A couple of years ago, I took my parents down to Plains, GA on Fathers' Day. We went to Maranatha Baptist Church and had Jimmy Carter as our Sunday School teacher. Yes, that Jimmy Carter. That is probably my fondest memory of being somewhere with a President. My parents really enjoyed it, too.

A few weeks a go a friend I have kept up with since college called and asked what I was doing this weekend. Long story short, she had tickets for a show here (she lives out of state) and wanted to give them to me and wifey if we could use them. It was John Fogerty and John Mellencamp. Great show but really hot and I dont do well with heat or humidity. Average age was probably in the 50's. We enjoyed watching the people and listening to the music. We laughed as a roadie was walking the seating sections looking for someone to show the bands some southern hospitality. Did I mention the average age was in the 50's? Now think about the roadie again and laugh.

Snake heads and fish heads

This week wifey was out trimming the shrubbery and stopped when she thought she saw a lizard. It wasnt a lizard but a snake.

Yesterday I was cutting some of our grass which is kinda thick and tall after the overabundance of rain from the hurricane. Long story short, I killed a snake with the mower but didnt know I had until I pulled the mower back and saw it moving around (which they do even when dead). Never did find its head.

Last weekend wifey and I escaped into the mountains. Her mom was in town and watched the dogs for us. Sunday we had lunch at a nice restaurant on the way home. I ordered the pan fried trout. It came out and part of the fish was raised up off the plate. I thought it might be more fries or a lemon wedge that got underneath the fish. It was Mr. Trout's head that had been folded underneath. I have eaten whole fish before but wasnt expecting it this time.


In poker news... I am doing much better at the free site I have been playing at. I am getting a good hang of it I just need to work on the mathematical parts a little more as well as knowing how to play positions better.

You want me to what?

Two stories... real quick

The other day I received a letter from a headhunter. The headhunter was hired by this corporate guy that wants to get into the line of work that I am in (they sent me his resume, too). Anyway, they would like me to volunteer my time to help train this guy to essentially be a competitor. Dont think that I will be doing that.

Today I went to a market research thing on cars. I got to look at trucks and tell them which one I liked best and why. It was obviously paid for by Dodge and we got to preview a new Dodge full-size truck not on the market yet that has some pretty cool features. About all I can say on that subject. They paid $100 for my time (maybe an hour) and some soft drinks on the way out. I wished I could have taken a peek at the SUV's they were doing, too.

What do you mean you are open?

Had lunch today with a friend at one of my favorite restaurants, a little Cuban Restaurant in an out of the way area. A friend of mine had told me he had heard it was closed. We called ahead and then showed up after learning it was indeed open. After lunch we asked about the rumor. It seems that the local paper ran an article saying that the restaurant had closed after 18 years and if you wanted cuban food to try a place that just opened up. The careless reporter claims he received some emails saying the restaurant was closed so he ran the story. He never called to check if it was true or not just ran the story. The paper ran a retraction (probably buried somewhere hard to find) but business has been slower than normal since the story ran. Makes you wonder about the validity of what you read in this paper doesnt it?

Friends and the Fundraiser

Last night was the event I threw for the Kidney Foundation. It raised around $1300 so far (some folks are feeling guilty for saying they would be there and then not showing up so they are writing some checks). I wish it would have raised more money but overall it was a great time. Kevn Kinney was as superb as always. It threatened rain all night and since we were outside (but covered) we were a little nervous. It would not have been a good thing for the talent to get electrocuted...

Kevn really got intothe show as did the crowd and his second set was almost 2 hours instead of the scheduled 1 hour. He shared a lot of background info on a lot of his songs (where and why he wrote them) and mixed in a variety of songs in the middle of his songs (for example, my favorite was when parts of the Sugar Hill Gang's "Rapper's Delight" found its way into "Fly me Courageous").

Kevn and I talked a good bit. He remembered playing at my college alma mater in 1991 and said it was one of his favorite DNC shows. He was unaware that I was the reason he played there. He was gracious and signed autographs and took photographs and even played requests from the audience (including one that was rather obscure).

Thanks to everyone that helped make this a success, including Dennis, John and Gardner and ESPECIALLY MCP.

Randomness

Currently I am doing the waiting game. Nothing you can do to speed up time, especially while waiting for tests results to come back. [sigh]

Went to Home Depot Landscaping today. I was looking for some plants for our beds but they didnt have that many to choose from. A child was on the loose. He was about 4 maybe 5 and his parents just watched him turned over flats of plants, signs, displays, and whatever else he wanted to do. They didnt correct him, and dang sure didnt "fix" any of his mistakes. One of my pet peeves if you have to know...

Early May I decided to play around in the stock market. It wasn't a big purchase but I just wanted to see what I could do. I had read up in several business publications on some areas for probably a couple of months and finally made my decision on what to buy. Yesterday my stock closed up 33% from when I bought it maybe 7 or 8 weeks ago! A friend bought the same stock maybe a month earlier (after reading the same things that made me believe it was a good stock) but a few dollars more per share than when I did, so he is up maybe 25% but I would bet he put a lot more into his investment than I did... Still not bad for an "amature"

Yesterday I tried my hand at online poker. Free site that you dont put up any money to play. I did well for the first hour or so. I stupidly left my email running in the background and got distracted when some emails started coming in and quickly lost all I had won and a little more. Wifey does particularly well at this site. Maybe one day I will be good enough to play against her on the internet.... HAHAHAH (she'll be reading this soon).

Last weekend with it being the Fourth and all, a theme park near our house had a huge fireworks display. It seems it was only us and a couple next door out in the yard to enjoy it. I remember the last couple of years when it seems half the neighborhood was having firework viewing parties but not now. Dont know why.

I guess it is real now

Yesterday the overnight delivery guy showed up with a package rather early in the a.m. I had just finished unhooking from the peritonial dialysis machine and was trying to figure out what package was being delivered. Maybe wifey was getting something, I thought as I went down to open the door. Instead it was the package of stuff for the crossmatching tests for Tuesday.

What will happen is that I will have a lot of blood taken because not only do I have to get blood for these tests but it is also time for my monthly labs. And if I am really lucky it will also be time for my quarterly labs, too.

Anyway, the same day that this is happening to me (Tuesday) 2 potential donors will have considerably less blood drawn. We will all send the blood by courier to the labs that day. In about 2 weeks we will know which, if either, is the best match. After that is determined, that person, if they are willing, would schedule the two or 3 day evaluation I had to do early February or late January. They would be tested to make sure that they have no problems that would preclude them from giving a kidney. 3 weeks later they would get the results of those tests and if they are still willing, then the transplant would be scheduled.

Those of you keeping score at home, that means the earliest that I could have the surgery would be the end of August.


In other news, I received some positive information yesterday on "the big news" that I have hinted at in past posts but nothing can be announced for another couple of weeks. Sorry.

Satellite Radio

Yes I know this is the third posting in one day. Count yourself extremely lucky.

I love satellite radio and here are some of the reasons why.

Commerical free music Imagine whatever type of music you like or are in the mood for and being able to listen to it with little interference from a DJ and no interference because of commercials. Just music.

Variety Imagine a channel dedicated to just about everything. Classical music? Check. Reggae? Check. Music from 1940's only? Check. Former NPR great Bob Edwards? Check. Comedy? XM has 3 comedy channels. Country? Do you mean newer country, older country or really old country and western, as they have all of them. Movie Soundtracks? A whole channel for you. Traffic and Weather? They have individual channels for all of the major cities in the US. They also have channels that play unsigned bands, R&B, Rap, New Age, Jazz, and EVERY Major League Baseball Game. The variety is staggering.

Signal Strength Have you ever taken a long road trip somewhere and go through an area with no radio stations or only stations playing music you dont like? Last fall, I drove from Atlanta to Gatlinburg listening to the same station (static free) all of the way there.

Special Shows A few weeks ago I was able to listen to Bonaroo live. Bonaroo is a large music festival in the middle of Tennessee that lasts 3 or 4 days. People camp out and listen to the music all day long. XM broadcast live some of the bigger names playing there and then some of the small stages throughout the day. South by Southwest in Austin was on a few months back. This week they have Live 8 and Sunday they are broadcasting live and commercial free from Willie Nelson's annual July 4th BBQ.



I find it hard to listen to normal, terrestrial radio anymore.

New News

Next Tuesday, I will have blood drawn as will two potential donors. Tests will be done to crossmatch and see who (if either) is the best match.

The Times are a Changin

Just a short little rant. When I was growing up, Arby's was famous for their "Western Roast Beef" Sandwiches. I am not sure the difference between western and eastern roast beef but ok. They even had a cowboy hat on their sign. Now that cowboy hat has morphed into a potholder. I dont get it. Bring back the hat!

Also, Kentucky Fried Chicken changed their name to KFC because they thought it would have more appeal and be hipper. Now they are playing Lynard Skynard's "Sweet Home Alabama" in the background of their commercials. What does "SHA" have to do with fried chicken? Somebody please tell me. I am not complaining about listening to Skynard. I love Skynard but I just dont see the connection. The only Skynard song I could think of that mentions chickens was "The Ballad of Curtis Lowe" but that chicken is actually a rooster getting ready to crow.

Bang your head

Last night the wifey and I decided to go to "Metalsome Monday". So we went to Virginia Highlands to the 10 High Club located in the basement of the Dark Horse Tavern.

Imagine if you will, Karaoke with a live band so that you can live out your rock and roll fantasies. The band's list of 200 songs leans heavily towards big hair bands of the 80's with some punk and grunge thrown in (and.. how did the Go-Gos get on this list?). The band is very good. The singers are like watching Karaoke... some are good (like the chic that looked like Pat Benetar and sang "Heartbreaker") and some are really, really bad (like the girl that was on
her honeymoon and serenaded her new hubby with some Bon Jovi).

Part of the fun is seeing who shows up. In the past, Butch Walker formerly of the Marvelous 3 has shown up and a couple of months ago Mike Mills from REM was present. Members of Velvet Revolver and Skid Row have also made appearances when in town. Last night we had
the pleasure of seeing and hearing Alan Atkins, the original singer of Judas Priest sing Quiet Riot's metal anthem "Bang Your Head."

I knew better than to sing last night. Besides they make DVD's of your performance to sell so you can live out the glory days over and over....

Picture Book

When the family and I were in Charleston for a week, I blogged that we were thinking of doing a picture book. We used Snapfish to upload all of the pictures and then put them in order with captions and stuff. I did this Monday night. Today the books were delivered. I have to say that I am impressed. Hardcover book with around 20 pages of pictures we took. It looks great! Got a couple extras printed, too. One is for mom and dad (part of a Father's Day present) and the other is part of a belated birthday present for my sister.

I looked at some of the other free photo sites (Ofoto, etc.) and they provide the same thing but Snapfish had some options I liked better and cost a little less. I think all 3 books with shipping (I opted for 2 day shipping) came out to around $60. Not bad.

Now we have hard copies of all of those digital photos already arranged in an album. Cant beat it.

Another Delay

Another Delay to what I was hoping to discuss last week and then tomorrow. Aaargh! I am building this up way to much and most of you probably wont care about it when it happens. Oh well. Hopefully I can post about it the middle of July and discuss why this is getting delayed yet again.

In other news... I am helping put together a fundraiser for the National Kidney Foundation of Georgia on July 14 here in the Atlanta area. A friend of mine is donating a venue, another friend hooked me up with Kevn Kinney formerly of Drivin and Cryin and he was kind enough to agree to play, another friend is helping with the sound system, and another is helping with some publicity. Man I am pumped. I have been a DNC/Kevn Kinney fan for a long time. In the early 90's I helped organize a show at the University I graduated from and even got to intro the band in front of around 8500 people.

Congrats

Atlantan Josh Arieh won his second WSOP bracelet late last night in the $2000 Pot-Limit Omaha game last night. A lot of people dont like Josh (not as many as despise Phil Hellmuth) but I kinda like his aggressive, cocky style. Last year at the WSOP at the main event, ESPN did him really wrong by editing some comments together that helped create some conflict around him. If you watch the replays, notice how on one comment as he starts speaking he is shuffling chips at a table, they cut the camera to something else and come back with a shot of him to finish up whatever it is that they have him saying through the magic of tv editing. In the last shot, notice that he is nowhere near a table or near chips. Yet they way they have his comments, they want you to believe it was all said at one time.

Anyway, a big congrats to Josh for his win.

2nd Blog of the Day

And this one is about my kidneys. In the next week or two (not sure of the exact date yet), Me and two potential donors will have blood drawn within the same 24 hour period of time. Tests will be done to crossmatch between me and each potential donor to see if either is a match (or which one is the best match). This is the next big hurdle to getting a transplant. I'll let you know what happens.

Amatuer Hour on TV

If you happened to have seen someone this morning on an Atlanta tv station that looked like me talking on a cell phone, it was indeed yours truly. The place that I go to for haircuts had called and asked if I wanted to help them out. A morning tv show was going to be doing liveshots from there this a.m. and if I came I could get a free haircut. I needed a haircut and agreed.

I have blogged about how I love this place. It is a men only spa/salon/barbershop. It is barely more than the national discount hair cutting chains that are located in every other strip mall in America. For $25 you get a good haircut, a beverage, they wash your hair, massage your shoulders and neck, and wrap a hot towel around your face. They also have massages, manicures, straight edge razor shaves, and shoe shines available.

So they were open early today to have this free advertising as Father's Day gift ideas. They had hired a "PR Expert" to speak on their behalf and help drum up sales I guess. It would have went much better if they had used the owner instead of this idiot "Expert." One of the two longest live shots the roving reporter guy approches the "expert" who is sitting in a barber chair. She stupidly didnt know that they were at that very moment live on the air. He asked her what a woman was doing at a man's salon and she said that she was primping for his "stupid show" and had been waiting on him for an hour and a half to talk to her. He tried to laugh it off and asked if she knew that they were on live TV? She replied she didnt. Again he tried to assist her out by asking what kind of services they offer here as opposed to a neighborhood barbershop and she replied that wasnt the way the reporter was supposed to ask the question. They sent it back to the anchors in the studio who were laughing at this expert idiot. They gave her another chance later on but the damage was already done. The place received a few phone calls from viewers who said that they wouldnt come after that performance.

I hate it for them. To help them out, I'll post a link to their website later this evening. I really love this place and highly recommend it.

A good read

Saved by desire to help
Road to kidney transplant rerouted to save donor

By PAUL KAPLAN
The Atlanta Journal-Constitution
Published on: 06/11/05

Cindy Gough is a 48-year-old mother of three in Roswell, with 20 years as a flight attendant for Delta Air Lines. Her kidneys are shot and she needs a transplant.

Pat Cusack is a 54-year old divorcé in Marietta, a low-key deep thinker from New York who manages projects for IBM. He's crazy about kids but never had any of his own.

PHIL SKINNER / AJC (ENLARGE)
PHIL SKINNER / Staff Cindy Gough needs a kidney and Pat Cusack was set to help; testing revealed a heart defect that required emergency surgery.
EMAIL THIS PRINT THIS MOST POPULAR

Pat read about Cindy's problem a few years ago in The Georgia Bulletin, the newspaper of the Catholic Archdiocese of Atlanta, and he decided to be tested as an organ donor. The tests showed he was a match for Cindy — and that all four arteries to his heart were blocked. He had emergency open-heart surgery.

So, the woman who needs help to stay alive helped save a life. And the man who tried to save a life, did so, but it was his own.

Both of them were bitterly disappointed.

Cindy's best chance for a kidney had slipped away, and Pat felt terrible about the emotional roller-coaster she'd been put on.

Pat bounced back quickly. He is fit and trim, and that helped. By the first anniversary of his heart surgery, he was back to running 15 miles a week — and Cindy was on kidney dialysis to stay alive.

Pat wrote a letter in March 2004 to Cindy's surgeon, Dr. John Whelchel, the director of organ transplant services at Piedmont Hospital. It said he wanted to try again as a donor.

Whelchel was conflicted. He wanted to help Cindy, but he didn't want to hurt Pat, whose recent heart surgery was a red flag. "Your letter presents an interesting ethical dilemma and I am not sure there is a correct answer," Whelchel wrote back. He said he wanted to bring the matter before the hospital's ethics committee.

It never got that far. Last May, just before he received Whelchel's letter, Pat was training for the Peachtree Road Race. For the first time ever, he couldn't make it up Heartbreak Hill, near Piedmont Hospital.

He went for a checkup, and three of the four new arteries attached to his heart were clogged. That meant more open-heart surgery. He made it through again, but he was finished as an organ donor.

Pat's condition is genetic. No matter how many miles he runs or how healthfully he eats, his arteries will clog. And after two surgeries, his body has run out of arteries to harvest for his heart.

So now Cindy and Pat are both in trouble. Luckily, they have each other.

"She probably looks at the kids each night and wonders if she's going to be around to see them complete high school, go to college, get married."

That's Pat explaining why he was ready to give a kidney to a stranger. He makes it sound like a simple decision, although of course it wasn't.

"He's so selfless," Cindy said. "He's like an angel."

Pat is slight and fair-skinned and he speaks in a monotone of gentleness.

The IBM guy inside him sees complex problems in simple terms: Cindy has a dedicated husband and three children who need her; he's had nobody since his divorce seven years ago. How could he not do the transplant?

"I really don't have anything else," Pat said.

At first, when Pat was set to donate his kidney, Cindy felt an overwhelming sense of appreciation. Now she's just worried about him. "He's in a dire situation, and there's nothing I can do, really. It's frustrating."

Pat is on a personal mission to help Cindy get a kidney. "I would feel totally completed," he said. Cindy, meanwhile, is keeping an eye out for the right woman for Pat. "He'd make a great husband," she said with a sly smile.

Cindy is strong — she was a tennis player before her kidneys gave out — but she's no match for the dialysis machine, which she's hooked up to three times a week.

Dialysis is a lifesaver, but it's a lifestyle killer for Cindy. It makes her nauseated and exhausted, and it gives her headaches.

She slogs through, day after day, by telling herself she's going to get a kidney and her life back.

"I feel like I'm getting closer," she said.

It won't be easy. The archdiocese article and the fliers posted at Delta have drawn a lot of potential donors — more than 100 were tested, according to Cheryl Manley, Piedmont's clinical transplant coordinator — but Cindy is a hard one to match.

She has cysts on her kidneys, like her mother had, and her mother's mother. After she had twins seven years ago, Cindy's blood pressure spiked and her kidneys deteriorated. She had a very high level of antibodies in her system, which the body produces to fight a foreign object, like a baby. Too many antibodies lowers her odds of finding a suitable donor.

"It's not impossible," Manley said, "but it's like looking for a needle in a haystack."

There have been several near misses, including one in March when she got a frantic 4 a.m. phone call about a cadaver kidney that looked good.

It was on a plane to Atlanta. She threw some things into a bag and raced to the hospital.

It wasn't a match.

One person who tested last year was a match, but backed out. That's not uncommon.

Until recently, kidney transplant surgery was a major ordeal for the donor. The incision often went from the middle of the back to the middle of the stomach. In many cases, the donor's recovery was longer and harder than the recipient's.

Today, the surgery on the donor is often done laparoscopically, which is much less invasive. The recovery takes about a week, instead of six weeks or more under the old procedure.

About 90,000 Americans are awaiting an organ transplant, and two-thirds of them need a kidney, like Cindy.

But she's got her family and Pat and several local churches and Delta in her corner, and that helps her stay positive, which is important.

"Once you have that new kidney in you, they say you feel reborn," Cindy said. "I can't wait."

Pat is on medication, trying to fight off his body's predisposition to clog his arteries.

After they became friends, Pat and Cindy found out they shared some history. Pat's been a member of St. Jude Catholic Church in Sandy Springs for 20 years, and Cindy grew up in that church. She and Jim were married there.

Their faith is important to both of them, especially now, and seems to give them strength. "I don't believe I won't get a kidney," Cindy said. "God will answer my prayers."

Mouths of Babes

I forgot to share this little gem. While doing the family vacation thing in Charleston, my wife asked my 3 year old nice if she had any boyfriends. She replied that she had at least three. We jokingly asked if she was going to get married soon and she said that you do that when you get older. We asked how old she thought she would be when she got married. She thought for a while and answered, " I think maybe by the time I am five." Not sure if she is registered yet or not...

Not Again

Remember a couple of months ago I bragged about getting off of some of my medicines, particularly a shot I was getting once a week? Well my blood counts have dropped a little (which could explain somethings) and now I have to get my lovely once a week shot again, at least for now. Not sure how long this will be. My arm is sore from the shot today. Running some tests to figure out why this happened.

Also, many of you may remember me discussing my friend with Lupus. She is like a second mother to me. Monday her doctor told her that she has even less time to live than she had been previously told. We've talked a couple of times this week. It is hard to find the right words for me to say and she doesnt want to go into the specifics of a timeline with me. Man I hate this.

Back from Vacation

Spent a week with the family just outside of Charleston, SC. It was me and wifey, my parents, and my sister, her husband, and my niece. No blood was shed, no fists were thrown, and all in all it was a good trip. The only real complaint was that someone kept dropping the AC down to 68. I get chilled easily (because of my kidneys) and my mother is cold-natured so we were not happy.

We had a 3 bedroom 3 bath condo on the beach. Of course it rained like every day. I think we ate seafood at least once a day. My brother-in-law said he had reached his limit on seafood. Wifey and I were just getting started. We did the aquarium (not that good), a harbour tour, a horse drawn carriage tour, and lots of walking. Wifey and I went out to Angel Oak one day on our own. It is the oldest living thing east of the Mississippi. They say it is around 1600 years old. Pretty impressive.

Mom wanted to do a family trip with some of her inheritance from my grandmother's death last year. So that is the main reason we went.

Wifey and I ate at some of the restaurants we found when we were there a few years ago for a wedding and one that she found when she was there for business. Mmmmm.

Saw a bunch of dolphins playing a couple of different times. Wanted to go deep sea fishing but the weather was too rough. Also wanted to go see a minor league baseball game (I love minor league games) but I think they were all rained out.

Will let you know how the photo books are when we get them printed.





In other news, the WSOP just started this weekend. Unfortunately it will not be shown on TV until starting in August. I will just have to keep up with the reports on the internet to see how it is going. The big event isnt for a few weeks. I have read accounts of people waiting 4+ hours in line to register for events. Some events are "selling out" which is hard to fathom.

The big announcement I was hoping to make this week has been postponed at least another week. It is probably not anything that most of you are thinking but keep your fingers crossed anyway.

Misc

Leaving Saturday for a family vacation so I wont be posting for about a week. I am sure that when I get back I will have some great posts about my little niece doing something cute (because that is what she does).

Was looking through Frommer's Budget Travel Magazine (one of my favorites) today. They have an article on some of the photo websites (Snapfish, Ofoto, etc). The sites will publish a hard covered book with your photos and captions for like $20 to $30. Each site is a little different but check it out if you are into that kind of thing. I'll probably do one when we get back and let you know how it goes.

Their could be a post here in about 2 weeks of some important news. Not going to jinx it but just stay tuned.

Also, some friends and I were talking the other day about the failure to find Osama. One friend reported that Osama is on dialysis and asked me some questions, seeing as I was the resident expert on dialysis. We googled it and found reports of Osama being on Peritonial Dialysis as I am. Every month I have a big truck come to my house to deliver several boxes (about 35 or so) of my dialysis supplies for the next month. Why cant they find the delivery source for Osama? I dont think a truck goes out to his cave once a month but he has to get the supplies from somewhere...

ZZZZZzzzzzz

We bought a new mattress over the weekend. It was delivered yesterday. It sleeps VERY good. It is thicker than our last mattress so it is higher up than our dogs are use to. My dog thinks it is very comfortable as he stretches out to his full extent. I think he would prefer it to be a King instead of a Queen... Wifey's dog is smaller and has problems jumping all the way to the top but I think she will have it mastered in a few days. I jokingly told wifey that I would buy her a ladder if she needs it to get in bed.

When I was growing up I had a twin size bed. I had it when I graduated college and moved out of the house. I remember when I finally got a bigger bed. I was about to purchase one when my parents got one that had been in storage that my paternal grandfather built. They cleaned it up and purchased me a mattress for my birthday maybe 6 years. We still have it in the guest bedroom and people brag about it when they stay at our house.

I used to travel a lot for a job I used to have and was able to easily sleep on a bed in a hotel that wasnt my own. Now it isnt that easy of a thing for me to do. I have gotten used to having my wife by my side and at least one dog at our feet (with the other dog being a monster under the bed). I miss them whenever I am not here or they arent here (especially wifey). I didnt sleep well in DC at all.

I used to be a stomach sleeper. Sometimes on my side but usually on my stomach. I havent been able to sleep on my stomach since October because of the port that was in my neck/chest. Now on PD I can only sleep on my right side or my back in order for the machine to properly drain and fill. Unfortunately this also means I cant cuddle when I sleep. I used to be the biggest cuddler (and still am when not hooked up to the PD machine).

DC Trip

Last week I was in DC for the launching of the National Kidney Foundation's "People Like Us" initiative. They had over 100 people from around the country with kidney disease, on dialysis (hemo or PD), or have had a transplant (or 2 or 3). They are trying to raise the political awareness of kidney patients inhopes of changing certain policies and laws.

I love DC. I love the restaurants. I love the monuments and all of the history there. I always have tons of fun in DC and look forward to going back.

I ran into a bunch of people I know from here that were there for various reasons. I was surprised at how many people I ran into.

One day while taking a cab from Capitol Hill to where the conference was at, I noticed that my driver was auditioning for the Nextel cup. He was doing 75-80+ mph through the streets of DC. I am serious about this.

One of the great things about this conference was the interaction with people that have been or are going through some of the things that I am going through. I learned some things about PD that I didnt know by talking to people that have been on PD for several years. A group of us went out to celebrate Cinco de Mayo (also the last night of the conference). One woman had just been diagnosed with kidney disease and not yet on any type of dialysis was full of questions and I hope that we were of some help to her.

I met one family that their son was diagnosed with kidney disease about a year ago. His mom organized a "walk-a-thon" and raised over $40,000 for the kidney foundation or kidney research or something like that. I met a transplant recipient in California that started a prom for transplant recipient teenagers. She has some ties in the entertainment community and is able to get A-list Hollywood stars to show up. Lots of great stories of people like this, people like me.




On a side-note... if you know me you know I adore my neice. She is 3 years old and thinks her Uncle is the coolest guy in the world (even if she doesnt see me that often because of the distance we live apart) and who I am to disagree? She and her mom were down about a month ago. She told me that she and her mom had been in a "big walk" the weekend before coming down to help people like me get well.

friend update

Just got an email from my friend... it is not breast cancer. She is very relieved.

Blogging Delay

I was going to talk about my week in DC last week but I am putting that off for a while as I just dont feel like talking about it right now.

Last year, a friend of mine was diagnosed with Lupus. Lupus is usually not terminal if they catch it in time. Unfortunately it wasnt diagnosed in time. Yesterday my friend's Doctor told her that she doesnt have much time left. This has hit me pretty hard.

Today I received an email from another friend that finds out today if she has breast cancer or not. She is in her late 30's and just got married last fall.

Thanks for being understanding if you are reading this. I'll try to update on the DC trip later.

I'm Getting Old

Sunday, the wife and I went to see the Black Crowes at the Tabernacle in Atlanta. It was pretty loud but not as loud as the Faith No More show with Helmet I saw in the early 90's. We ended up leaving a little early but it was still a good show. Since the Robinson brothers are from Atlanta (as are most of the band) and since it was Mother's Day, Mama Crowe was in the audience. Didnt see Chris's wife though... This got me thinking about all of the concerts I have seen over the years and I have decided to list some of my favorites in no particular order...

Flickerstick at the Roxy in Atlanta This was the third time to see the winners of VH1's show Bands on the Run. It is at least partially responsible for my wife and I marrying. We had dated for about a year but had quit dating. Flickerstick reawakened the feelings I had for wifey and we soon started dating again.

U2 at Legion Field, Birmingham AL 1990ish I love outdoor shows. This was the third show of the Zooropa tour that I had the chance to see. Sat around 12th row center. Opening acts were Big Audio Dynamite and Public Enemy. The irony of PE doing a song in Alabama that talked about racism and had people dressed as Klansmen on the stage, ending with the lynching of a Klansmen helped to make this show. U2 was great, too.

Willie Nelson The first time I saw Willie live was on a lark the day after the above U2 show (somehow I ended up with FREE tickets). I am usually not a big country fan but WOW. I have seen him a couple of times since.

The Wailers, early 90's Bob Marley's old band still tours. I had the chance to hang out with them before this show for several hours and then see them live. I need to see them again.

The Funky Meters, mid 90's Tippitinna's in New Orleans Art Neville's band. The night I saw them, all of the Neville Brothers dropped by to make cameo appearances. The night ended with a big Neville Brothers encore. Tippitinna's (the original one) is a great concert venue.

George Clinton 2003 Atlanta Another outdoor show. The wife and I were backstage with some friends for the entire show. Opening acts were some of my favorites, Drivin N Cryin and North Mississippi Allstars. We ate supper with everybody and got some photos and autographs.

REM 2002 Athens GA at the famed 40 Watt Club. I had just went to a local bar to hang out with some friends when I got a call from a friend in Athens. He asked what I was doing and told me to come to the 40 Watt for a fundraiser for a state legislator friend. I said it was too far. He then said that I would want to see the last band. He wasnt sure of the name they were using but that it was Mike Stipe, Mike Mills and Bill Berry (Peter Buck had missed a plane somewhere). I called the wife (we were dating then) and picked her up and drove to Athens. We stood about 15 feet from the stage. Bill Berry's first show since he had his brain problem.

John Mayer The first time I saw Mayer was at a Borders Books in the coffee shop. There was maybe 20 people there, most were trying to find a quiet place to study. Have seen him numerous times since then.

Rolling Stones, Legion Field, AL 1989 Another FREE ticket and I was there mainly to see Living Color open up for them but seeing the Stones live made them one of my favorite bands. Definitely one of the best shows I have ever seen.

Lenny Kravitz, Auburn AL 1990 ish Yet another FREE ticket. I was there to see the Cult. I was a huge Cult fan, until I saw them live (nothing like a singer too drunk to remember his own words to make you lose interest). Kravitz was the opening act and was incredible. Been hooked since.

Al Green Atlanta 2004 The wife and I enjoyed Rev Al sooooo much. Surprise Guest Isaac Hayes was good to see too.

Pink Floyd 1994 The last show to be played at Grant Field in Atlanta. Floyd is music, sound effects, lights, and movies. Sensory overload.

Lynnard Skynnard 1993 Fox Theatre Atlanta I won tickets off of the radio for front row center. Didnt like my date for the evening. They had Charlie Daniels, Travis Tritt, Zakk Wylde (formerly played with Ozzy), Brett Michaels (former front man of Poison now doing a solo country thing) and a bunch of other folks doing acoustic covers of their favorite Skynnard songs before the show started. The show was shown live on Pay Per View.

Jimmy Buffet I have seen Buffet more times than I can remember. His shows are some of the greatest times as are the parking lots pre-show. I even saw him in 1998 at the Gov's inaguration of Don Siegelman in Alabama. He sang "Stars Fell On Alabama"

Tuba Fats Funeral 2004 New Orleans Not what most people would call a concert but if you have ever seen a funeral procession in New Orleans you might be tempted to reconsider. Tuba played with tons of people (Dirty Dozen Brass Band, etc) and his procession had hundreds upon hundreds of people marching down Bourbon Street and playing instruments and singing and dancing. The procession was probably about 90 minutes long.

This list is getting long so let me just list a few together: Bob Dylan, Bonnie Raiit, Tom Petty, B B King, Buddy Guy, Dr. John and Mothers Finest.

Will probably post later today a more kidney oriented blog. And yes I know I didnt give you any links to the above bands but you can use Google to find them. Check out Pollstar to find out when they are playing in your neck of the woods.

Random Ramblings

Near our house is a park with a little pond. This time of year we have to be careful driving by the pond on our way back from the store as there are lots of baby ducks and goslings being paraded about. Some of the goslings look a little different like maybe Mother Goose was doing things beside reading nursery rhymes... like maybe she met a turkey... Anyway, lots of honks and quacks to warn you that they are crossing the road. Honk! Honk! Quack!Quack!Quack!


I think I am addicted to blogs. Not just writing them but also reading them. There are a few celebrities I read their blogs like one of my favorite musicians David Ryan Harris has a blog that he infrequently updates as do poker superstars, Josh Arieh (and native Atlantan) and Daniel Negreanu. I read their sites a lot as well as a couple of friends. Whenever I have some time to kill, I will click on the "next blog" button on the top right of this screen and go searching through the blog universe. I have to warn you to be careful doing this as some are not family friendly, but overall it is intersting.


We have screened 5 possible donors so far and none are compatible. 4 more to go. Of those 4, 2 I have never met and one I have only met 4 or 5 times. I am overwhelmed by their selflessness and generosity.

I love to cook, as does my wife. Last night we colaberated on a BBQ pork. Wifey did the Boston Butt, I did the dry rub and sauce. I have to say, it was one of my better sauces. She is trying to get me enter a national recipe contest with a low sodium gumbo I came up with when I was on my renal diet. Nice prizes. I guess I will try to get my recipe ready to enter this week.

What I have learned in 7.5 months

A little over 7 and a half months ago I learned about my kidney failure and started all of this process. Here are a few things I have learned.

My wife is a strong person. She has surprised me at times at her ability to handle all of the things that we have had to go through. She has been the one to help keep me focused on the good things. I am a lucky man.

I have a lot of good friends. Whenever I needed some positive thoughts and energy, there has always been someone to call or drop an email or come see me personally. They didnt know I needed them and usually the call or email would start with "hey I was just thinking about you..." They have been there to celebrate each small success I have had as well as helping me out of some funk. And then there are all of the folks, some I dont even know or know well, that have volunteered to be tested to see if they are a match. Words cant adequately describe how grateful I am to these people. More on that in a later post.

Not all Doctors are bad and not all are good. Obviously I am finding it hard to trust doctors what with the Doctor that created this problem and with my first Nephrologist that was full of bad advice (I am being polite here). I find my self second-guessing everything they do or say. I look up every drug that I am prescribed (often in the Doctor's office) before I will take it. However, I have met some incredible Doctors that I do trust and am grateful to have working on me.

The human body is an amazing machine. Most people take their bodies for granted and abuse them. I know I did. To think that the body can use fluids in the abdominal cavity as a replacement kidney leaves me speechless. Ditto for knowing that if it only has one kidney, the kidney grows some to work more efficiently. I was told in October by a couple of Doctors that they were surprised I was alive or not in a coma with the test results they got back on my kidney. My body kept working and adapting to keep me alive.

I work for and with some great people. OK, obviously this doesnt apply to everyone like a certain unnamed group that is extremely late in paying thousands of dollars for services I did for them over 6 months ago, but they are the exception to this rule. Last fall I had clients volunteering to take me to the Doctor or pick up prescriptions for me. They worked around my hemodialysis schedule (back when i was going to the clinic 3 times a week for 4 hours each time). They covered meetings and events for me. I even had vendors that would drive 40+ miles to my house to pick up things on days I didnt feel like leaving the house, even taking things to some of their competitors for me.

There are a lot of people that have kidney problems and lots of people with transplants. Even though I had done some work in the past for the kidney foundation, I never really grasped this fact. It seems almost everybody I know knows somebody or is related to somebody that has gone through this. There was even a King of the Hill episode on giving a kidney (also a South Park episode but I couldnt bring myself to watch that one). CNN did a story Wednesday night on kidney donations. Cojo was on Oprah yesterday to talk about his transplant. All of this helps reassure me that everything is going to be all right.

Music Music Music

This posting has nothing to do with my kidneys or dialysis. Thought you might want to know.

I love music. I mean I really love it. Almost all types of it, too. I listen to a lot of it and am thankful that I have XM satelite radio so I can listen commercial free to anything I am in the mood for. I decided to give you some of my favorites that you may not be aware of in hopes that you may enjoy some of them.

I was thinking about this tonight as I was sitting next to the wife and watching VH1's Save the Music while she was grading papers. Rob Thomas (formerly of Matchbox 20) did a cover of Voodoo Chile with Robert Randolph. I have been into Robert for 3 or 4 years now. He is an amazing guitarist (pedal steel guitar) and his own music is kind of a blend of funk and rock mixed with a healthy dose of uptempo spirituals (since he plays every Sunday at his church). As far as I know he only has one studio album and one live album out. Robert Randolph can be checked out at this link.

One of the great things about satellite radio is that you can press a button and see the title and artist of a song. I was coming home one night from a trip a few hours south of here right after I got my truck and XM. I was listening to Bluesville as I often do and heard a sound that just blew me away. I found out the title and artist and called home and asked my wife to write it down for me (couldnt find a pen while driving). The band was Hillstomp. They play a punk style of blues and there is only 2 people in the group. After checking Hillstomp out at their website, I ordered their album and it stays loaded in my 6 disc changer.

Lastly, is a guy that I was just talking about at dinner last Friday night, David Ryan Harris. I have been following him since 1988 or 89 when he was the front man for Follow for Now (of whom Rolling Stone magazine raved about). He is the musical director for John Mayer when he tours. David is the most talented musician I think I have ever heard and we played one of his songs at our wedding reception. Please check out David at his official website or at his fansite. After doing so, buy his albums and then check him out on tour.

Just doing my civic duty of introducing good music to all who may stumble upon my blog...

Waiting and waiting and waiting...

Tuesday I went to see my doctor to get a referral for a non-kidney related health item. It was the first time back to the doctor since he told me that my kidneys werent working and put me in the hospital. I was flooded with a lot of unpleasant memories but at least they didnt put me in the same examination room as last time.

They made an appointment with the specialist I needed to see today at 9:30 a.m. I arrived at 9 to fill out the volumes of paperwork required of new patients. Around 10 I was told that they had yet to receive the written referral from my doctor's office and that they couldnt see me until they got it. They called the Doctor's office and was told that it was on its way. Another 30 minutes go by and they call again.

Another 30 minutes with it not being there, I drove to the doctors office to get a copy of the referral and waited around there. I was told that they had just gotten a call about the paperwork maybe 5 minutes ago and had faxed it as soon as they got it. I informed them that they had gotten two calls over about 2 hours of time and that I still wanted a copy of it before I would leave. Hurriedly they got me a copy and I left.

I arrive back at the specialist's office and told the receptionist that supposedly they faxed it. I was told that they had not received it so I laughed and provided them with the copy I had gotten.

Then I had to wait for them to fit me in. Left the office around 1:30. Nice way to waste half of a day, huh?

Maybe I should send a bill to my primary care physician for "pickup and delivery of referral" and maybe an exasperation fee.

Got Ink?

In 1993 I was at an art museum showing of Warner Brothers Cartoons. I am a big cartoon fan. Long story short, while looking at the original cells, I decided that Marvin the Martian would be a great tattoo. After looking at several artists and studios, I got Marvin inked into my left ankle.

A few years go by and I got a band around my right ankle. A few more years, and I decided that Marvin was lonely so I got his dog K-9 tattooed bedside him, with plans of getting more cartoon charcters on me left ankle, basically making a cartoon band. If you were to see me in a suit and tie, you would never guess that I had any tattoos. None at all.

After all of the healthcare drama I had last year, I started thinking I needed another tat. What should I get and where should I get it? And could I even get another because of my health situation?

I started purusing the net looking for suggestions. I thought of a butterfly because of the rebirth symbolism which would go along with me almost dying last year and with the thanks of a new kidney being given a new chance on life. I couldnt find any "masculine" butterflies that I would want for the rest of my life. I even thought of having "John Doe was here" with an arrow pointing to my kidney and using the name of whomever gave me a kidney instead of John Doe but then I thought that was cheesy (original but cheesy).

Finally I called my transplant coordinator. Transplant coordinators are like a second mother. They work out the details for the testing and the surgery. They have to know where you are and how to reach you at any given time. They help answer questions, offer advice, and give you a shoulder to cry on. I told her what I wanted to do and asked if it would impact negatively getting a transplant. She admitted this was the first time she had been asked that but we worked out the pros and cons and a cut-off date of when I had to have it by.

I kept looking at designs, and finally came across the idea of a phoenix. It holds the same symbolism as the butterfly but a lot more manly. I decided to do it as a cover up on the band on my right ankle (which has lost its meaning to me over time).

Last Thursday, after we got back from Vegas, I did a manual dialysis exchange (obviously couldnt do it on the plane at night when I sleep like I do now) and took a 4 hour nap. I awoke, showered and headed to the tattoo studio. I had already went and met with the artist and he worked on the drawing. A couple of hours later, I emerged more colorful (and a little sorer) with a Phoenix coming out of some flames that go all the way around my ankle. The last tattoo, I can ever get.

A few less drugs

Forgot to share the news... I am on a few less drugs.

When you are on hemodialysis, you lose blood. Some is left in the tubing and the filter after each use. Your body has a hard time replacing the lost blood cells naturally (especially with weakened kidneys) so you are given Epogen each time you are on dialysis by putting it into the lines used to drain and fill your blood. When I switched to PD, they gave me the Epogen as a shot (actually two) once a week. The 2 shots equaled what they normally would give me in a week. Usually about an hour or so after the shots my arms would be stiff and sore. A couple of weeks ago they took me down to 1 shot a week and last week when I got back from vegas I was told my red blood cell count was high enough that I didnt have to take no more Epogen. Matter of fact, red blood cell count is in the normal range (ie working kidneys range).

Also, I am off of my blood pressure medicine I was taking 3 x a week, 4 tablets each time. I have never had blood pressure problems until I went on PD but now back to normal.

So I am now down to 6 prescription pills a day and no shots. I am pretty happy. Also means I only have to go see my dialysis nurse once a month to have my blood work drawn up and to see the Nephrologist instead of the weekly visit for a shot.

No this does not mean my kidneys are working any more than they were. That cant happen.

More Vegas

Yes, I know I am blogging alot...

I need to look up who invited the cycler and send them a thank you card if they are still around. Without a dialysis machine like the cycler, I couldnt have done Vegas (at least not easily). I had to send ahead my supplies and carry my machine through the airport. I even had a note from my doctor saying that the device in the bag was not a bomb....

We stayed at the Venetian because 1) it is nice and 2) they had a special on the internet. The rooms are huge with a sunken living room and a canopy over the bed. When we checked in, was told that the supplies I sent ahead would be up in about 30 minutes. Took 2 hours which cut into our gambling time. Had a dealer not happy that we were newcomers to craps so we left and only played at the Venetian when we were coming in or going out. The last night we were killing time before our trip out and had an obnoxious craps supervisor or pit boss or whatever he was. We decided to leave a little early because of this guy and checked to see if our car we had reserved from the hotel the night before could leave early. They had lost our reservation so we just took a cab. Dont think we will stay (or play) at the Venetian next time.

We didnt see any shows. Most of the ones we wanted to check out were "black" on Mondays and Tuesdays. Keep that in mind if you are planning to go to Vegas. Watched a couple of minutes of a Dean Martin impersonator. Had our picture taken with a showgirl. Most of our photos should be up tonight on our Ofoto account. Email me if you need the link.

One interesting thing I found out... some of the cheaper, no name casinos on the strip had nicer toilet paper. Bellagio uses sand paper.

Events Last Week

So last week I had a couple of events that I forgot to blog about... sorry just kinda busy with work and then getting ready to go to Vegas.

My wife is a teacher. At the school she teaches, they hold a male pageant. Talent, evening wear, casual wear and the usual questioning and answering stuff. The proceeds this year went to a student that had a heart transplant last year and also to help me with some of the medical expenses. Students gave us a standing ovation. Real nice event.

The other event of the week was a black tie event for the National Kidney Foundation. We sat at Coke's table (the biggest sponsor of the event) since they had some extra seats. Great food. Good band. The event honoroed Griffin Bell, former US Attorney General, who had a kidney transplant a few years ago. The wife looked simply ravishing.... Met some really nice people at our table. Told them about my need for a kidney (thus the reason we were at the event) and one guy wanted to buy us tickets for Celine Deon in Vegas.... Was trying to say no gracefully (I mean maybe it would have been different if he had offered Elton John.... hahaha) when his girlfriend saw how uncomfortable it was making us and she talked him out of it.Everybody at the table filled out organ donor cards.

Viva Las Vegas

Just flew in from Vegas and boy are my arms tired {rimshot}... and my legs and my...


Wifey and I spent three days in Vegas and flew in on the red eye this a.m. It was my first trip and her second. I learned to play Craps and did fairly well. Broke even on Let it Ride (which I also just learned) and maybe made $50 total on Blackjack (which used to be my favorite by looks like it is now being replaced with Craps).

We walked... an awful lot. We took a cab to the old Vegas mainly to see Binion's Horseshoe Casino. Binion's is the place that put poker on the map. It started the World Series of Poker in the 70's and hosted it until this year. The World Series has gotten so big that it no longer can fit inside Binion's so this year it will be played at the Rio, just off the strip. The wife and I love the sport of poker. She even plays in a monthly girls only game of which I am usually a dealer.

Wednesday we walked over to the Bellagio after lunch. The Bellagio was hosting a stop on the World Poker Tour tournament. We watched for a while and kept hoping to see of the poker superstars that we love to watch on the telly. Finally we went to the second room being used in the tournament. We hit the jackpot there. Sittting at various tables were several big names in poker. There was Amir Vahidi chewing on his cigar. A few others were recognized including Scotty Nguyen. Scotty has won more in poker tournaments than almost anybody else. We sat about 6 feet from him and listened as he and another real pro sitting next to him discussed the playing styles of everybody at the table (mostly amatures wasting cash). What other sport can you sit 6 feet from the biggest stars of the sport and listen to them discuss strategy? Or for that matter if you have the balls to put up several thousand you could actually have the opportunity to play against the big names. Scotty is a nicotene junky and since smoking is not allowed in the Poker room he had to get up to go puff on a cigarrette in the main part of the casino. I followed him out and got him to sign the back of one of my business cards. We talked for a while and he seems to be a really nice guy. I told him that one day I hope to have the balls to be sitting at a table with him and what an honor that would be. He said he would look forward to it, asked me my name, and shook my hand. Class act.

One interesting note, Wednesday night we ate at the Mirage. On my way to the bathroom I just happened to see the Poker Room. I looked in and saw the dreaded Phil Hellmuth. I love watching him lose! The good news for me, is obviously he didnt make it too far at the WPT tourney at the Bellagio and was forced to go take money from amatures away from the bright lights of the television cameras.

Another Update

Wednesday night I started on the cycler. With the cycler you are doing peritoneal dialysis but instead of doing it manually 4 times a day, you hook up to a machine when you go to sleep and the machine does everything while you sleep. You wake up and everything is done for the day (sometimes you have to a manual exchange during the day but I dont for now). I love the freedom.

Thanks

Thanks to Beth for helping me out with some of the changes that I wanted to do to my blog and now have been done.

Changes

I felt like making some structural changes to my blogs so here it is. What do you think?

I'm trying to figure out how to do a few things like add what I am reading and listening to (like any of you really care about that kind of stuff). A few blogs I have been to have a chat room that you can go to off of their blog. Really nerdy stuff....

I have made a few modifications in the past but none were too visible. The biggest change before this one was making it so that you didnt have to register with blogger to leave a message.

Anyway, drop me a note and let me know if you like the changes or if you know how to add some of the stuff I am looking to do. Thanks.

Next time I may tell you about the new tattoo I am thinking about...

How good it feels

So last Saturday I took my first shower in over 6 months. You have no idea how good it feels nor how much you miss taking a shower.

Last Friday I got my hair cut. I have been going to this place that only cuts guys' hair. Sports and news on the flat screens. They can also shine shoes, give pedicures and manicures, and massages. Great place with no screaming kids and something to read besides old Ladies Home Journals. I got my first straight edge shave while I was there. Man was that nice.

Next week I will be on the type of peritonial dialysis that you do at night while you sleep. I am anxious to start.

The following week the wife and I will be in Vegas for a few days. I have never been and can hardly wait.

Thud

So Wednesday I went to the Doctor to have the perma-catheter removed from my chest. It was used for Hemodialysis. The procedure was done in the Doctor's office. First they gave me a shot to deaden the area around the port, which was the worst part of the whole ordeal.

This week, the Doctor had a young lady that is studying to be a medical assistant in his office. He had her come in to watch the procedure. Young african american girl. She turned whiter than me about the time he took the catheter out and she hit the floor. The nurse had to quit helping the Doctor and work on the student MA instead. I tried not to laugh too hard. When it was just the nurse and me, I asked if someone should really consider the medical proffession if they are a little squeamish at the sight of blood.....

The good news is that I can take a shower tomorrow. About time, as I am starting to reak....hahahaha.


Another potential donor had their blood typed this week. She is also A+ so that rules her out for me.

Yesterday I had my monthly visit with the nephrologist. I haven't mentioned him in my blogs but I like him SOOOOO much better than the nephrologist I used to have from his practice. My body is doing well with PD and I should be on the one you use when you go to sleep by the end of the month. The doctor asked if there was anything else I needed and so I asked what his blood type is and if he had ever thought of giving somebody a kidney. I think it was the first time anybody had ever asked him that. I laughed and offered to put him in touch with my transplant coordinator (especially after he told me his blood type is a match).

Several years ago, a friend of mine in the state legislature proposed to execute prisoners by beheading them. He reasoned that the inmates' organs could then be used by people that needed them. Just something to make you go hmmmmmmmmm.

Meaning of Life

No, not the Monty Python movie... Obviously I have had a lot to think and reflect on over the last several months. Yesterday I was given something else to think of.

By now everybody knows of the manhunt here in Georgia for the accused rapist that shot a couple of Deputies, a court reporter and a Judge. This all happened yesterday around 9 a.m. Normally I would have been at the intersection at 9 a.m. where the first car was carjacked and the second Deputy was shot. Yesterday I didnt go to work due to a slight fever and sore throat after being exposed to my neice last weekend who had just gotten over strep throat.

Several years ago I was in DC. I dated a girl there for over a year and was up to see her. We had done some touristy things and walked up the mall, past the back entrance of the Capitol, and over to Union Station to ride the subway. About the time we got to Union Station tons of police cars went racing past us with lights flashing and sirens blaring. A guy had shot his way into the back entrance of the Capitol and into an office. We missed it by maybe two or three minutes.

It is things like yesterday or the DC trip or suddenly having your kidneys shut down that really makes you stop and think about life and what is really important. Family and friends take on more importance and other things just dont seem to matter anymore.

Thank you for being a part of my life.

Changing Lives

So 2 more people ruled out of being a donor. One went to his doctor to get his blood type sent to my transplant folks. He found out he is hypertensive. Another went to her doctor and found out she is diabetic.

There are people that have quit taking the medicine I was on that caused all of this. Others are more skeptical when given a prescription and now want to know everything they can about the drugs they are given. Glad I could help.

In other news, my cousin that wanted to be tested but found out he is wrong blood type is now thinking about giving a kidney to anyone that needs it. He feels pretty strongly about this. I'll be honest and tell you that I tear up when I think about his selflessness.

I have been nominated to some national committee of dialysis patients to advocate for changes in laws and public policy. Also nominated to be on the Executive Board. Maybe this is why this happened to me....

An old roomie is going to be the next to be tested as soon as his doctor can prove his blood type, even though he is located quite some distance away. Will keep you up to date on this.

March 30 will switch to the cycler. Still peritoneal dialysis but this one you hook up to at night when you go to sleep instead of doing it 4 times a day as I do now. Next week I get the perma-cath taken out of my next that was used for hemodialysis. Cant wait to take a shower.

Lotta updating

When you are on peritonial dialysis you have to be careful and not get infections. Monday I had a fiber in my line (happens when you first start this type of dialysis) and it was hard for fluids to drain. Somehow in the rush of trying to do something about the fiber I must have touched an area that you arent to touch and got an infection. Had to call the nurse and go get some drugs. When you get an infection, you have more fibers floating around. They couldnt get the fluids out Monday afternoon so they forced more fluids in (on top of what I already had) . This cleared the lines but they couldnt drain any because the fluids they put in had medicine in it and if they had drained any, the medicine may not have stayed in to work. Let's just say walking around with 4 liters of fluid in your belly is hard on your back and is very uncomfortable. I think I know what it feels like to be pregnant....I hope I dont ever have to go through this again...

Got a call from my cousin today. He is not type O blood. Now we look at some of the other people that have expressed an interest in being tested.