Dear Life-Link, I am available to fill Victor Bowers Position!
A couple of days back, I posted a message to the Life-Link Message board, which is apparently monitored. My Post:
I read with dismay the article in the tampa tribune - http://news.tbo.com/news/MGB7NE0LB5E.html It is unfortunate that Medical Director Victor Bowers is denying a dialysis patient a life saving organ transplant. The fact is cadaveric donations can NEVER meet the demand for organs. Living related and living unrelated will have to make up the difference. Life-Link's website says that they are "dedicated to the recovery and transplantation of an increasing number of high quality organs" Living donors provide the highest quality (survival rate) versus deceased donors. Give the guy his operation.
For the record: I received a kidney transplant in September of 2000 from my mother.
Here is the reply:
Topic: transplant denied (2 of 2), Read 10 times New Conf: OTHER TOPICS From: Jennifer Krouse email@example.com Date: Friday, February 25, 2005 06:09 PM
Thank you for visiting the LifeLink Message Board. We understand and appreciate your concern. Please be assured that LifeLink HealthCare Institute remains committed to providing quality of life, and life-saving transplants, to as many patients as possible. In fact, we facilitated 375 life saving transplants in 2004 alone. Nearly 70 of those were kidney transplants from living donors.
Naturally, due to federal privacy regulations, we are unable to comment on the specific case to which you refer unless the patient in question chooses to allow us to do so. However, internet access, and having a web site is not a rule out for living donation.
Ruth Bell Public Relations
The Director of Life-Link had this to say in his rejection letter to Alex Crionas,"An American Society of Transplant Surgeons (ASTS) statement on solicitation of donor organs has also been distributed. The ASTS and our transplant program are strongly opposed to the solicitation of organs or organ donors by recipients or their agents through websites." And its clear that the PR Person called in to clean up the mess had this to say: "Having a website is not a rule out for living donation." My question is this, do we believe the guy setting policy or the woman spinning it? That giant whooshing sound you hear is Life-Link retreating.
There is an incredible amount of fear that takes over your life when you hear that your kidneys are failing and that you need a transplant or dialysis to stay alive. I believed there were things I wanted to do that would never be possible without my native kidneys. I worried about the expense of the operation. I worried about my mother's health after the transplant. I was afraid that kidney wouldn't last. How would you feel if your mother risked her life for an operation and then the kidney was rejected? Would she blame me? Would I blame me? Was I worth the trouble? You can't imagine all of the things there are to worry about when you have years to ponder the issue. I can only imagine how other people feel when they go from healthy to dialysis in days, or weeks; I can imagine all of that pain and anguish compressed and amplified.
I cannot imagine being told that I would be on dialysis for up to a year, but possibly more waiting for a kidney. There is no control in that situation. You might even get called as "backup" in case the primary transplant falls through. How depressing does that get? I've met patients who rely on their faith in God to see them through this period. "It's Gods will. When God is ready he will give me a kidney." I don't know if my faith would be strong enough to see me through years of dialysis. Imagine having to change the oil in your car every other day, but Jiffy Lube took 4 hours to do it. Would you accomplish your life's goals being stuck in the Jiffy Lube waiting room? Would you even have a life?
In Alex Crionas' shoes I would set up a web page. I would be on TV and radio begging for a kidney. I would be doing anything in my power to control my fear, to beat it into the ground, to show it who is in control. Victor Bowers, Life-Link, and the American Society of Transplant Surgeons want that power and control for themselves. They decide who lives or dies. They decide who gets a kidney from whom. When did transplant patients become so powerless and why in my next post.
The 11.5 mile loop had a short stretch of headwind, followed by a good tailwind on 98 to the junction at 17. I was suffering, but it was a good kind of suffering. I was able to knock down 8 laps before we switched over to the track. My goal had been 10 laps, but something was going on that I couldn’t quite put my finger on. I was using Perpetuem, so I was getting enough water, electrolytes, and fuel. I would scarf down a banana between laps to get a little extra potassium in, and I was eating a half of a powerbar now and then to give my stomach something substantial to play with. I wasn't bonking and I didn't feel dehydrated, but my performance was below what I thought it should be.
After switching over to the track, the problems persisted. Its possible that the Prednisone I had just tapered off of messed with my system, its possible I just hadn’t acclimated to the heat and I was just mildly dehydrated. But whatever the reason, I was having a very difficult time just getting my heart rate into my aerobic zone and I couldn’t get above my aerobic zone at all. I switched over to plain water for an hour and that seemed to help. My lap times were about 15 minutes per lap and I was able to complete several laps at a time, but the effect was short-lived.
My lap times slowed to 25 minutes per lap. I was pedaling around in my granny gear and could barely get into the aero position. The temperatures dropped into the mid-40’s. SO, I eventually ended up completely bundled up against the cold. I had asked my parents to crew for me, because of their experience getting me out of bed in the morning for school. I knew they would be able to keep me on the bike. My dad did an excellent job. He timed my breaks and helped me back on the bike.
I was amazed at how tired I was between midnight and 3am. Anytime I sat down, my eyes would close; on the bike, I was afraid I would fall asleep while riding. I thought that exercise would keep me alert and awake, but it wasn’t happening. My dad let me take a 20 minute sleep break and as I sat down in the truck I remember thinking, “Maybe I should ask for a powerbar…” and I was asleep before I’d finished the word powerbar. And instantly, he was banging on the door to wake me up. Twenty minutes flew by, I begged for more time as he opened the door and mechanically I got out and got on the bike. He kept saying “10 more laps to 300 miles. You can’t leave here without hitting 300 miles. I didn’t drive all this way for you to quit before 300 miles.” So, in my mind I was thinking 10 laps to go. I would knock out 2 laps at a time (about 40 to 50 minutes) and then take a short break. After Lap ten, he told me to go around for another lap as “insurance.” After that, he just kept saying “you’ve got hours left, go around one more time.”
I ended up with 314.1 miles and got second place in my age group for the RAAM Qualifier which was non-drafting. Unfortunately, I didn’t hit the RAAM 425 mile qualifying mark. There were, however, 5 riders who did qualify for RAAM at this event including Ann Wooldridge, the first woman to qualify for RAAM at BikeSebring and the leader in my age group Christopher McDonald who logged an amazing 511 miles in 24 hours. That translates to an average speed of 21.3 mph for 24 hours.
We were on the road from 4:30 am to 9:30pm Thursday to get from Herndon, VA to Sebring, FL. Q heard us leave and being a two year old, thought everyone had left her and so she started screaming “MOMMY” loud enough to wake the dead. Then while we were on the road she was home pestering mommy with a chorus of “Meme Pepe Dat?” We stopped for lunch in Santee, SC looking for Jake’s BBQ (Pepe found them on the internet and he wanted to get a T-Shirt for Jake, my sister’s son). Apparently, Jake’s wasn’t there anymore, so we went to the Lone Star Barbecue and Mercantile: Very unique, one-of-a-kind restaurant and old-fashioned general store that is comprised of four historic buildings filled with antiques including the general store, restaurant, and a social hall. A wonderful down home, country buffet is served that includes pork barbecue, barbecue hash, and fried chicken, as well as delicious desserts such as banana pudding and strawberry shortcake. When they use the terms Unique and Antique, they weren’t kidding. I’m a really picky eater and the prospect of eating at a restaurant my father found on the Internet was a bit scary. The place was soon packed with locals and the food was pretty good.
Friday: I met a German rider who was praying for the airlines to find his bike. I met Larry Graham (recumbent) while talking with the Guth’s. Leslie Tierstein and Jeff Magnuson both from the DC area showed up in the afternoon. Mark Andrews. The race organizer, was the one who told me that about the article in the Tampa Tribune about the dialysis patient being denied a life-saving kidney transplant. My dad, quoting John Fogerty, said, “He ain’t no senator’s son.” Since it was Friday dinner, my parents didn’t eat meat, but apparently I was exempt. When I pressed my mom for where in the bible it says I could eat meat on Friday, my Dad replied, “The Book of Armstrong.” Note to self: when you start McChurch add athlete exemptions to “no meat on Friday” rules.
Saturday I woke up with an air-conditioning induced headache, so I took another shower, which completely threw off my preparations, I forgot to stretch and didn’t get any kind of warm-up in. I paid for it about an hour into the race with a pulled muscle, I had to stand, sit upright, and generally avoid the aero position for a half an hour, and throughout the first 100 miles I had to repeat the exercise. The first 100 miles were the same as last year and it felt really great to be riding down there. I was slowly pulling in some of the 12 hour riders who had tagged onto the faster pacelines, mentally it feels good to see someone in the distance and gradually reel them in. The winds were really light, so I was riding a Zipp 404 in the front and the Zipp Disc in the rear. Although, just before we hit 98 South we had an unrelenting headwind and we were traveling into it for several miles. It was just a long straight road with no shelter from the wind. First 100 miles down in 5 hours 26 minutes. I took a break to apply sunscreen and grab supplies and headed out on the 11.5 mile loop, which I believe has about the same elevation gain as the 89 mile loop. I think I was starting to get dehydrated here, but it was very gradual.
So, I sent out some email in support of Alex Crionas of Orlando, Florida after reading the article in the Tampa Tribune and I received my first reply from a Pharmacotherapy Specialist. He says that the person Alex brought to the center was not a friend, which from the article sounds true, but that's not a reason to deny a transplant. He went on to say that Life-Link believed Alex found this donor through the internet, which Life-Link may beleive, but contradicts the facts in the article. He also said that Life-Link also believes that there is an understanding between Alex and the potential donor regarding financial compensation. Which again contradicts the facts of the story. Because Life-Link believes there will be money changing hands, they have a valid excuse to cancel the transplant because as we all know, paying for organs is illegal. This also sets a dangerous precedent for Life-Link, if they get away with this, they can cancel any transplant just by saying they think money is going to change hands. To take it to an extreme, the next patient might be a little too black, or might be a little too poor, or maybe just a bit to Jewish for their tastes. "Sorry Mr.Lieberman, we think you might be going to pay for that kidney, so you are out of luck. We have a fine blonde haired, blue eyed boy waiting instead."
"Transplant Denied" from the Tampa Tribune 2/18/05. Here's the short version. Alex Crionas is a dialysis patient in Orlando, Florida. He started a webpage to find a donor. He eventually found a donor, Patrick Garrity, through mutual friends and the transplant center - Life-Link abruptly stopped the tissue typing of the potential donor when they learned that Alex had set up a website.
In a brief letter dated Feb. 4 and signed by LifeLink medical director Victor Bowers, Crionas learned why. His case had been reviewed, the letter said. ``In addition, we have reviewed your personal Web site.'' The American Society of Transplant Surgeons and LifeLink are ``strongly opposed to the solicitation of organs or organ donors by recipients or their agents through Web sites,'' the letter continued. ``After careful deliberation, we will not consider any living donor for you.''
Life-Link's website says "LifeLink of Florida is an independent, non-profit organ and tissue recovery organization dedicated to serving patients in need of transplant therapy and their families." and "LifeLink Foundation is a non-profit community service organization dedicated to the recovery and transplantation of an increasing number of high quality organs and tissues for transplant therapy."
According to the UNOS website, there are 65,133 patients waiting for a kidney transplant. Cadaveric donations will never be able to meet the demand, living related and living unrelated will have to pick up the slack. Organs from living donors give patients the highest survival rates. From the article, it seems like Life-Link didn't even bother to interview the donor. Its standard procedure for a social worker to interview potential donors to determine motives, expectations, etc. The social worker should be making the call as to whether or not Patrick Garrity is an appropriate donor, not some backwards-thinking *expletive deleted* director.
Give the guy his life saving operation and if you're still queasy about web donations, develop a better screening process, don't just bury your head in the sand. The WWW is not going away. If you'd like to write to Director Bowers, here is his email: Bowers@lifelinkfound.org
I love to support my local bike shops. I bought my Softride from Bonzai Sports in 2001, I even worked at Bonzai for about a year, but I still buy stuff from Trinergy. Trinergy is a competing shop in Sterling, Virginia. I also buy stuff from Performance Bikes, a large chain. I mostly buy from Performance because they have great deals on Powerbars, they are the closest shop, and they have a killer loyalty program.
Here comes the BUT: But, In preparation for Sebring, I needed to order a few things. I called my local Performance first to see if they had the lights in stock, but no dice. SO, I went online and ordered. When I went to check out, I tried to enter the Gift Certificates that my mother-in-law gave me for Christmas. No Dice. So I called and placed the order. The inside sales rep tried to enter the gift certificates into her computer and it wouldn't work, so she put me on hold to check it out and then hung up on me. I called back in and placed the order AGAIN. Again, the cift certificates wouldn't work, so they processed the order and passed me over to customer service.
Customer service worked with me to figure out what was wrong. Apparently, if you buy a gift certificate at the store, you cannot use it online or on a phone order. You can only use the gift certificate at a store. Here's where it gets fun. Customer service told me that if I wanted to use the gift certificates, I had to go to the store and place the order AGAIN over the "red phone". I couldn't just show up at the store and pay, I had to place the order again with the exact same people I was talking to, but I had to actually be calling from the store.
So I jumped on my bike, rode down to Performance and placed the order. I had placed my first call to the shop at 1:30 and the order was finally accepted and paid for by 5pm.
I wish that was the end of the story, but it isn't. I received the order and I had a set of $10 dollar lights in it. The batteries were dead in one of the lights, so I went to Radio Snack and picked up two new batteries for $4. I went to check the lights on Monday and the new batteries were dead again. I called Performance and they said they would send out a new set. I told them I was leaving for an important race and needed it by Wednesday. She said it wasn't a problem, she could overnight the lights and I would have them by Wednesday. I asked if she was sure and suggested that she send them to my hotel in Florida just to be safe and she said they would be here by Wednesday. It is Wednesday - No Lights.
Now, I've screwed up orders before and I generally have sympathy for other small businesses that screw up my orders, but Performance is a big company. The stores and website should be interchangeable, its basic, its fundamental, it should be core functionality.
104 miles, 6.5 hours, mostly successful ride. Good-fluid and nutrition lasted 6 hours. That will be exactly what I need for the grand day loop. Bad-the front derailleur bar end shifter slid out of the aerobar with 20 miles to go. Sebring, Here I come.
My local station NBC4 just ran a piece on fire safe cigarettes, currently only sold in New York City. They cite a Harvard study which found that the fire safe cigarettes are no more toxic than ordinary cigarettes, there is no difference in price, and they sell just as well as ordinary cigarettes.
I hate cigarettes, but I believe in the ideals of our founding fathers: "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." If lighting up makes you happy, you are free to do it, just don't expcect me to hang around while you do it. Banning cigarettes or taxing them out of existince is more up ole King George's route, but making them safer and marketing the hell out of them is the American way. Yes, Ralph Nader had to drag the car companies kicking and screaming into the safety realm, but now that they are here, you see crash test results in almost all of the ads. There's a commercial on TV showing a Truck hauling a trailer down a mountain and the whole point of the ad is the integrated breaking system that STOPS THE TRUCK (imagine that, a braking system that actually stops the truck). Safety Sells...Get with the program Philip Morris.
There is a PR flunkie, Jamie Drogin, for Philip Morris saying,
"We want all manufacturers to play by the same rules. Um, and we believe that the way to address all of those issues is through Federal Legislation that would establish a uniform policy."
I understand it will cost them money to switch over their product lines. I'm guessing that saving 800 lives per year just isn't worth opening themselves up to the flood of lawsuits which will happen when they make the switch. If you make a fire safe cigarette, then the old cigarettes are by definition fire hazards.
So Jamie, why is Federal Legislation needed for your company to create a better product? Imagine if we had to wait for the government to legislate faster computers. We would still be counting on our fingers right now. Don't you think that a safer cigarette should be a part of your kinder gentler brand image? Show your customers you care.
SATURDAY, FEBRUARY 5, 2005
"UNMARKED AND UNCHAINED," starting from Clarke County High School, Berryville, Virginia. MEETING TIME 7:45am. Yet another reincarnation of this ride into West Virginia's eastern panhandle! It now bears almost no resemblance to the original ride. The new route features much improved scenery, and most of the roads are now signed, but there are still plenty of unchained West Virginia dogs. We'll climb up to Apple Pie Ridge in the morning and visit with "Daisy the Country Dog" at the White Hall store. The route to lunch through Berkeley County's fruit orchards is particularly scenic. After lunch in Hedgesville the terrain mellows out quite a bit as we head into Jefferson County. We'll have a rest stop at Charlie Brown's store late in the ride. 101 miles with a few shorter options. Rolling terrain--shouldn't be much more than 5,000 feet.
With Sebring not far off, I decided to pedal to the ride start. The W&OD trail was mostly passable to Leesburg. However, I fell twice and squished the bananas I had brought along. With poor conditions on the trail, I jumped onto Dry Mill Rd in Leesburg and then onto Business Rte 7 through Hamilton, Purcellville, and Round Hill. Then there was an 11 mile stretch on Rte 7, with a eye-watering descent down to the Shenandoah River. Finally, back onto Business Rte 7 in Berryville. I had left home at 4:45am, but I was now a half hour late for the ride. It was actually pleasant riding, it was peaceful and the traffic was light. The ride was a perfect tune-up for Sebring. There were some minor climbs, but overall, it was flat. I eventually caught up to the group at the lunch stop. The last 50 miles went fast as Chris and Chuck pushed the pace with their tandem. The eye watering descent down to the Shenandoah turned into a gut wrenching ascent on the way back.
Over 16 hours on the road, 180 miles, somewhere between 6000 and 8000 feet of climbing (in contrast, Crista's centuries uusually have 6000 - 8000 feet of climbing) and I had nailed my food and drink. My weight at the end of the ride was the same as the beginning, which tells me I was drinking just the right amount of water. I was still riding strong and hadn't bonked, so my food intake was just right. This was the showstopper last year at Sebring, so I think I've got one less thing to worry about.
Hammer Nutrition has a lot of good tips on its site regarding fueling and hydration for endurance sports. The link above is to their guidebook, but if you go to www.hammernutrition.com and click on "Knowledge", they have more info.
Even with the guides, it takes a lot of trial and error to get a combination that works for a person. Everybody is different and there can be hundreds of variables in a ride. Heat, Humidity, degree of acclimation to local weather conditions, clothing, effort level, food eaten in the days leading up to the event, wind, etc. can all make changes that can tip the balance. Doing these types of events on a "pre-owned" kidney with some heavy duty medications thrown into the mix makes it a bit more difficult.
I've been using these weekend century rides to dial in my nutrition. Fueling and hydrating is a delicate balance, a half of a gallon of water in either direction can end a ride with painful, possibly emergency room conditions.
During the 24 Hour Bike Sebring event last year, I got a bit dehydrated in the first 100 miles and then I reacted by over hydrating in the second 100 miles. At the 200 mile mark, my belly was bloated and painful, and I was still thirsty. I didn't recognize it at the time, but I was probably hyponatremic. I crawled into my truck and slept, with frequent trips to the bathroom. I also had some gastro-intenstinal distress, which I think may have been too much simple sugar from Gatorade.
So, this weekend, I went out with plain Water in my camelback (which was under my Jacket) and two bottles of Perpetuem on my bike. Perpetuem has an electrolyte profile, so I am hoping that will replace gatorade. Unfortunately, the bottles froze up before I had gotten halfway through the first. And when I say Froze up, I mean solid. I was able to defrost them in the Microwave at the High's Convenience store at the 25 mile mark.
The problem came up at the end of the ride, when I ran out of cash and gatorade, and was left with drinking plain water. After the ride, I hydrated with water, and AGAIN, got myself into a hyponatremic condition. I spent the night, nauseaus and vomiting. I only have two weekends left to get this right before the event.
I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.