Monday, April 30, 2007

The Sundance Kidney

I returned to work today, and it felt great.

#1 Most Common Question Asked: How are you feeling? (Answer: “Fantastic! You?”)

#2 Most Common Question Asked: When are you having that surgery again? (Answer: “Uh, 11 days ago…”)

I also started exercising. I ran about a mile this morning, and it felt pretty good. I’ll stick to moderate cardio fitness for the next month since I can’t lift anything substantial until I heal more. Every now and then, my torso screams with pain making me realize that it has been 16 hours since I last took Tylenol. This is a worthwhile reminder that I’m not Superman and need to take it easy.

I spoke to Brenda, who is doing well. Her new kidney is getting quite the workout since she is drinking a ton of water. It seems to be operating just great, so there is little risk of her returning it to me. Her abdominal incision was a lot more serious than mine, so it will take her a lot longer to recover.

Finally, Brenda’s family in Hawaii and the folks at MatchingDonors.com both sent me a ton of “get well soon” sweets which I have been eating like a pig in the fathouse. I’m convinced it is a conspiracy to give me Type 2 Diabetes, so I’ll need a kidney transplant myself.

My newfound morbidly obese life will become just like an O Henry story or an episode of Alfred Hitchcock Presents.

“Did you hear about that jackass who gave away his kidney only to find himself…”

Wednesday, April 25, 2007

Creatinine from the Black Lagoon

I met Brenda at the hospital today (six days post-transplant) for our post-operative check-ups. Brenda looks and feels great. We are both off of our narcotic (and delicious) painkillers in favor of (plain, boring) Tylenol. My wounds (three of them) from surgery are all healing well.

I was mostly interested in finding out our current creatinine levels.

Allow me to explain:

The functioning of your kidneys is best measured by testing the level of creatinine in your blood. A low level is good and indicates good kidney functioning. A high level is bad and indicates kidney failure and the need for dialysis and/or a transplant to save your life.

When kidney people talk about your “creatinine level,” it is generally expressed in a single number, such as “1.4.” What this is referring to (in the non-metric U.S.A.) is 1.4 milligrams per deciliter.

Normal levels of creatinine in the blood are approximately 0.6 to 1.2 milligrams per deciliter.

A person with only one kidney may have a normal level of about 1.8 or 1.9. Creatinine levels that reach 2.0 or more in babies and 10.0 or more in adults may indicate the need for dialysis to remove wastes from the blood.

Before my surgery, my creatinine level was 1.2. Six days after the surgery, it is 1.6. I’m told this is normal. This number will continue to decrerase as my remaining kidney swells (with pride) over the next several weeks, and increases its filtration rate.

The increased level of creatinine in people suffering kidney failure causes their brain function to diminish. They often feel “cloudy” in their thoughts.

Prior to surgery (and during her kidney failure), Brenda’s creatinine level was above 9.0. Immediately following receiving my kidney, her creatinine level has plunged to 1.0.

She says her mind is no longer cloudy.

I say my kidney has made her a genius.

She says I shouldn’t get carried away.

Monday, April 23, 2007

Kidney Donation Timeline

Many people have expressed surprise how quickly the whole kidney transplant transpired. Here is the comprehensive timeline detailing how the whole thing unfolded. I put it together using my Palm and email archives.

January 29, 2007 While my wife was out of town, I read an article on Reason Magazine’s “Hit and Run” blog about kidney donations, a topic I had been interested in for some time. It linked to an article called “Here’s Looking At You Kidney” by former Reason editor, Virginia Postrel, a kidney donor herself. Her article mentioned MatchingDonors.com. I contacted Ms. Postrel, via her husband, to establish who pays for the donor’s operation. She promptly responded that the recipient’s insurance pays for the donor’s medical costs. She also made herself available to answer my myriad of dumb questions. I began an exhaustive amount of web-based research into the nature of the surgery and learned two important things:

1. The surgery itself was a routine procedure with a quick recovery time.
2. Living with one kidney was exactly the same as living with two kidneys.

January 30, 2007 I spoke with a friend who is a very talented surgical transplant nurse at Rush Hospital in Chicago. She put me in touch with the transplant coordinator for the hospital, who was a real moron. Eventually, I was able to get my point across to the pinhead on the phone that I wanted to donate my kidney to a stranger on Rush’s transplant list. She informed me that they didn’t do that at Rush, but she believed that Northwestern Hospital in Chicago had such a program. I made an appointment with Northwestern Hospital’s Transplant Department for an orientation session. Unlike Rush, Northwestern’s staff was friendly and helpful every step of the way.

January 31, 2007 I discuss the possibility of donating a kidney with my wife, Lisa. After being presented with the facts, she was receptive to the idea. We looked at the Matching Donors website and saw Brenda’s listing. We also watched a You Tube video featuring Brenda on a local newscast. The news story indicated that Brenda had found a donor from Texas who had stepped forward to donate a kidney. Lisa and I discussed at length the ethics of choosing someone from MatchingDonors.com vs. simply giving my kidney to the next person on the hospital’s waiting list.

February 2, 2007 I attended an orientation session at Northwestern Hospital in a room full of donors. I was the only donor there without a recipient. Dr. Talia Baker (who later removed my kidney) did a PowerPoint presentation answering all questions and addressing concerns. Following the presentation, I had blood drawn to establish my blood type for possible matching. I began the paperwork to become a “non-directed” donor, meaning that I would give to whomever Northwestern felt was most needy.

February 3, 2007 I sent an email to Brenda Lagrimas, the woman whose profile I had seen on MatchingDonors.com to see how she was doing. She didn’t respond immediately, so I moved forward with Northwestern’s Non-Directed Donor program. I made my second appointment with Northwestern for donor screening.

February 8, 2007 Brenda finally responds to my email, and I learned that her Texas donor had fallen through, and she was searching for a suitable donor who wasn’t going to jerk her around. We set up a phone conversation for the next day.

February 9, 2007 I spoke to Brenda on the phone and told her that if we were a match, I’d gladly give her my kidney. I contacted Northwestern Hospital to change my donation from non-directed to Brenda as my recipient.

February 15, 2007 I had my next appointment with Northwestern where I gave more blood for testing, and they performed a chest x-ray to establish that I do, in fact, have two kidneys. I passed this phase of screening.

March 4, 2007 I collected my pee in a jug for 24 hours for testing at Northwestern. This was utterly humiliating.

March 5, 2007 I turned in my jug of piss at the hospital. The hospital had me meet with a Transplant Social Worker to ensure that I’m sane enough to donate a kidney. I also met with a transplant surgeon who answered my new questions about the procedure. The hospital performed a CT Scan of my kidneys to ensure that the plumbing was appropriate for transplant. I passed every step of this phase.

March 20, 2007 Brenda and I heard that we were cleared for transplant. We chose April 19 as our transplant date.

April 2, 2007 Brenda and I met for the first time at Northwestern at our pre-operative doctor’s appointment. We were shown a video that answered nearly all of our questions about “k-day,” and we met with the fantastic Lori Gardner, Northwestern’s Transplant Coordinator, who answered the rest of our questions.

April 17, 2007 My co-workers threw a surprise party for me at lunch to wish me luck. Interviews with Fox News, The Chicago Sun Times and The Chicago Tribune took place.

April 18, 2007 My last day at work before the surgery. The press barrage hit the papers and television.

April 19, 2007 Surgery day. I was under the knife around 11:30 a.m., awake around 2:00 p.m. The surgery was successful and painless. Drugs regulated post-op pain. I was up and walking later that night.

April 20, 2007 Lots of walking around the hospital. Peeing on my own was very difficult that day, but after succeeding, I was sent home around 3:00 p.m.

April 21, 2007 Brenda was sent home. Her new kidney was functioning perfectly.

April 22, 2007 More recovery at home. Fox News aired a follow-up story celebrating Brenda’s return home.

April 23, 2007 I walked a mile with my son, returned to volunteering at the National Runaway Switchboard. This was my first day without painkillers other than Tylenol.

Friday, April 20, 2007

Mission Accomplished

Well, I’m home now following yesterday’s kidney donation.

The surgery itself was remarkably fast. I’m told that thanks to the technical proficiency of Dr. Talia Baker, my left kidney was removed in about an hour. Of course, for all I knew, it could have been a week as I was unconscious the whole time. Pain meds upon my awakening made the whole thing a non-event.

(Trivia: My entire Transplant Team was female – surgeon, anesthesiologist, physician’s assistant, nurse, and resident. “Ladies and gentlemen, The Kidnettes.”)

The best news of all was the fact that Brenda’s body accepted my kidney (or the kidney formerly known as my kidney), and it began making urine before she was even stitched back up. Her incision was much larger than mine, so her recovery time will be longer, and she will likely go home tomorrow. We were both up and walking shortly after surgery.

I was pretty groggy and anti-social last night, and I slept poorly due to the octopus of I.V. and catheter tubes. All of the tubing was removed around six this morning, and I shed my hospital gown in favor of street clothing. I cleared my head by walking around the hospital and entertaining guests at my hospital room after-party.

Before I was able to leave the hospital, I had to urinate on my own (just like my three year old son just learned to do). This was the topic of lots of complaining and whining on my part (“I can’t do it. I can’t go potty.”), but the nurse assured me that I could, in fact, make tinkle-tinkle, and then mission was accomplished.

I spoke, via phone, with the founder of MatchingDonors.com, and he assured me that any recipient who is unable to pay the fee for a listing could get listed for free. It was clear that he was a good-hearted man who cared a lot. He said he loses money on the site, but he believes in the cause. Brenda and I had the 42nd successful transplant brokered through the site. He also said that the media blitz surrounding our procedure resulted in 32 new people stepping forward to register as donors through the site.

Again, mission accomplished.

Finally, thanks to all of you who wrote or called me over the past few days. Corresponding with you took my mind off things and helped pass the time as I was waiting to pass urine. I owe you one.

Chicagoist

My favorite local blog, www.chicagoist.com, wrote a very nice entry on my donation:


We Want You(r Kidney)

Tom Simon does a lot of things right. He investigates white collar crimes for the FBI, volunteers for a youth crisis hotline, biked thousands of miles for AIDS charities, and donates his organs to perfect strangers … just because he can. But whatever you do, don't call him a hero.

According to Simon's blog, The Kidney Chronicles, his desire to "help others and alleviate suffering" led him to consider handing over one of his kidneys. He initially approached the transplant department at Northwestern Memorial Hospital to be a "non-directed" donor — meaning that he wouldn't have any say in who received his kidney. While this would be all well and good, he also discovered the option to pick the recipient through a website where hopeful recipients post profiles telling their story and need for organs. That's where he found Brenda Lagrimas.

For years, Lagrimas, 31, has been receiving dialysis three to four times a week. Kidney failure put her on the waiting list for a kidney, along with over 70,000 others. Simon chose Lagrimas because she is young, with the hopes of starting a family, and is a fellow in the law enforcement world.

Simon makes a point to say that he is not crazy or heroic. He is merely doing a public service. He stresses that this procedure poses very little risk to the donor with virtually no long-term side effects. The remaining kidney simply picks up the slack, and there you go! You're out there making urine just like all of the two-kidneyed folks.

Here at Chicagoist, we have family members who are alive today due to the generosity of organ donors (hey, Chris!), so we couldn't be more thrilled to hear about this. People making the decision to hand over their organs after death is fantastic, but live tissue donation? That's where it's at. While organs from cadavers greatly help the cause, live tissue donation offers a better chance of transplant success. And, frankly, not enough people allow for the use of their organs once they pass on.

Now, we don't expect everyone to run out and get their kidney sliced out. But, c'mon, at least sign those licenses and make sure to express your donation wishes to your family. You really can save a life.

Thursday, April 19, 2007

Nice Coverage

Can't sleep. Part nerves. Part "bowel preparation" (don't ask).

My surgery was pushed back two hours, so family waiting on the "he's okay" call shouldn't worry if there's no news until noon.

Chicago's Fox Affiliate did a nice story last night that is available online:

http://www.myfoxchicago.com/myfox/pages/News/Detail?contentId=2966287&version=1&locale=EN-US&layoutCode=VSTY&pageId=3.1.1

If that link is no good, simply go to www.myfoxchicago.com, click on "news" and do a search for "FBI" and "Kidney," and you should find it.

My friend and, er, Kidney Mentor (?), Virginia Postrel, did an informative blog post mentioning my donation. It can be read at:

http://www.dynamist.com/weblog/archives/002512.html

She makes the point that I've been trying to convey throughout this press onslaught:

"...donating a kidney is not an especially risky procedure or unthinkable sacrifice. That doesn't mean everyone should run out and give someone a kidney--any more than everyone should take a job in law enforcement. But we need to start thinking of kidney donors as normal people taking reasonable risks for great benefits, not as crazy or heroic."

I'll plead guilty to crazy but not heroic.

Wednesday, April 18, 2007

Press Coverage

FBI agent a reluctant hero
(http://www.suntimes.com/lifestyles/health/346261,CST-NWS-kidney18.article)

April 18, 2007

BY NATASHA KORECKI Staff Reporter/nkorecki@suntimes.com

He's an FBI special agent, a father, a crisis hotline volunteer, and -- on Thursday -- he'll donate a kidney to someone he just met.

But Tom Simon doesn't want to be called a hero.

Simon, 37, says he wanted to make a difference in someone's life and show others that donating an organ isn't difficult to do.

He looked on a donor Web site, www.matchingdonors.com, and found Brenda Lagrimas' profile.
She was young, wanted to start a family and, like him, was in law enforcement. To Simon, she was the perfect match.

"I'd like to draw attention to the fact that this isn't a giant sacrifice in my life," Simon said. "Brenda is going to die if she doesn't get a kidney. I have one to spare. I'm not being a hero. This is social justice."

Simon started with the FBI 12 years ago and investigates major financial and white-collar crimes. He's married and has two children, ages 4 and 3. He made the decision after many long talks with his wife, he said.

Donating an organ isn't as daunting as most people think, Simon said. He'll undergo laparoscopic surgery and expects to be home within a day and, after a rest at home, back at work by May 1.

'I will finally be free'

Kidney donations are the most common type of organ donation. Experts say the risk to the donor is low because the remaining kidney will pick up the necessary work.

Lagrimas, 31, of Evanston, was diagnosed with kidney disease in 2003. She works as a victim witness specialist for the Cook County state's attorney's office. In 2004, she developed congestive heart failure. Her malfunctioning kidneys drain her energy. She gets dialysis three times a week for 3.5 to 4 hours each session.

She says she thinks transplant surgery at Northwestern Memorial Hospital on Thursday will change her life. "I will finally be free," she said.

Lagrimas also has her friends at work to thank for matching up with Simon. For her 30th birthday, colleagues collected more than $600 to buy a lifetime ad on matching donors.com.
Sites like matchingdonors.com are controversial because they reward recipients who put on the best marketing vs. those with the greatest medical need.

Simon initially walked into Northwestern and offered to be an anonymous donor. But he later changed his mind and started surfing the Web.

"I would have wanted the person to be exactly like Brenda," Simon said. "She was my dream recipient."

Coincidentally, Lagrimas was also on Northwestern's wait list.

Her time on the Web site was an emotional roller coaster, she said. People showed interest in helping, then faded. Others tried -- illegally -- to sell her their organs or asked that she help them into the country in return. One man from Texas corresponded with her for eight months, then disappeared.

When Simon e-mailed her, she didn't even respond right away, thinking it was just another false hope. She couldn't believe it when he turned out to be legit.

"He doesn't see it, he's practically saving my life," Lagrimas said. "He's a hero to me. He's my hero."

© Copyright 2007 Sun-Times News Group
--------------------------------------------------------------------------------

Going beyond the call: FBI agent to give kidney
Recipient is a woman who also has a link to law enforcement

By Jeff Coen

Tribune staff reporter

Published April 17, 2007, 9:15 PM CDT

During her job helping victims of domestic violence navigate the Cook County court system, Brenda Lagrimas could sometimes forget there were very good people in the world.

That is until she met Tom Simon.

A 12-year Chicago FBI agent, Simon will donate a kidney Thursday to Lagrimas, a woman he never met before going online to look for someone to give a kidney to earlier this year.

"He's just an awesome guy," Lagrimas said Tuesday. "I totally lucked out."

Lagrimas, 31, of Evanston suffers a type of nephritis that created scar tissue and left her kidneys unable to filter toxins normally, and she has been on dialysis for a few years. Simon, 37, had become interested in being a living donor, and the two found each other on a Web site that helps link those who need organs to those who want to give them.

Simon, a married father of a young daughter and son, was already a regular blood and bone-marrow donor when he became interested in going further."

The thought of being able to save someone's life by donating a kidney has been an attractive option to me," Simon said.

It's a low-risk proposition for the donor, and obviously has a tremendous upside for the recipient, said Simon, who believes he has an ethical obligation to be a living donor."If you have the ability to help someone out with very little to ask of yourself, I feel you should do it," he said.
He said he was especially happy to find a recipient who is a younger person who wants a family someday, and he was pleased that Lagrimas has a connection to law enforcement. Lagrimas has spent eight years as a victim-witness specialist for the Cook County state's attorney's office.

She first learned of her condition in 2003, and it progressed until she learned she needed dialysis in May 2004. No one in her family was a suitable donor, so for her 30th birthday in 2005, her co-workers bought a lifetime placement for her profile on http://www.matchingdonors.com/. Simon e-mailed just as Lagrimas was dealing with the disappointment of not hearing back from someone in Texas who had been testing to see if he was a good donor.

After a few messages, they spoke on the phone. "He said he would try not to put me through the worst job interview ever," she said, remembering Simon asking her a few questions about her life and her past. "I felt pretty comfortable knowing he worked for the FBI."

The pair will have surgery at Northwestern Memorial Hospital, and Simon said he expects to be back at work May 1 investigating white-collar criminals.

jcoen@tribune.com
Copyright © 2007, Chicago Tribune

Monday, April 16, 2007

Meeting Brenda

I met Brenda and her mom at our doctor's appointment on April 2, 2007. As expected, Brenda was kind, charming, and appreciative. Her mom was a sweet lady who was very emotional and grateful beyond words. Meeting Brenda solidified my decision to help her.

I'm donating a kidney to a stranger on April 19

Entry Date: March 24, 2007

On April 19, 2007, I will be donating one of my kidneys to a stranger. Any questions?

What made you decide to donate a kidney?

There are currently about 70,000 people in the United States on the kidney transplant waiting list. However, there are only about 13,000 kidneys available for transplant each year. About half of these come from cadavers, and the other half come from "living donors" such as me.


Okay, that's very sad, but why you?

The quick answer is that I am donating because I have a spare kidney, and there are people out there who will die or, at the very least, suffer on dialysis unless they receive a transplant. I think that saving a life would be a very powerful experience.

Those who know me should not find this totally out of character. The reason I went into law enforcement, biked thousands of miles for AIDS Charities, stopped consuming animal products, and volunteer my time at a youth crisis hotline is because of my desire to help others and alleviate suffering. Donating one of my kidneys on April 19 is simply the next step in what I hope will be a long life of public service.

As many of you know, I am a religious, but deeply flawed, Catholic. I like to think that I come from the "social justice" wing of my faith as opposed to the "intolerant jerk" wing. This also informs my decision to donate a kidney.


What does your wife think?

Lisa has been very supportive. I would not be donating if she felt strongly that I shouldn't.


What does the surgery entail?

The donation of a kidney is laparoscopic surgery, meaning small incision and quicker recovery. I'll be out of the hospital on the next day, back at work in two weeks, and back to normal in a month. The surgery is no more dangerous than any procedure done under general anesthesia.


Are there long term negative effects of living with one kidney?


In short, no. There is no scientific evidence in 50 years of living kidney donations that there are any ill effects to living with one kidney. Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the "glomerular filtration rate") to match the power of two kidneys. In short, I'll have a single super-kidney instead of two simply adequate kidneys.

What if something happens to your remaining kidney?

My family has no history of kidney disease. When kidney disease occurs, it nearly always strikes both kidneys at the same time. It's not like one kidney fails and you find yourself knocking on wood, thankful that you've got a spare. If I should develop kidney disease, I will need treatment or a transplant – just like I'd need if I had two kidneys.

What if one of your kids needs a kidney?

This is the best argument I've heard against donating. That said, I can't justify not saving a life today because it might inhibit my ability to possibly save one in the future. My wife will have a spare kidney for them, and we both have loving families who may be willing to help if one of my kids is in need of a kidney.

Are you able to get paid for your donation?

No, that would be illegal. The only incentive I am permitted to receive is the warm feeling from helping another. Well, that is not exactly true. If a kidney donor needs a transplant, they go straight to the front of the line on the kidney transplant list, which seems like a very fair deal to me.

As a public policy matter, I have no problem with donors selling their spare organs to needy recipients. I wouldn't do it, but I think anything we as a society can do to increase to donor pool is a good thing.

Why not just sign your driver's license?

Living donors have better kidneys than dead ones. The likelihood of a successful donation is increased greatly by a living donation. That said, anyone who signs their drivers license is okay with me.

Who is your kidney recipient?

I walked into the kidney transplant department of Northwestern University Hospital a short while ago and told them I wanted to be a "non-directed" kidney donor. This means that I was prepared to allow the hospital to choose my recipient from their transplant waiting list.

I immediately began to have misgivings about this approach. What if my kidney wound up inside a real jerk? Or a registered sex offender? The lion's share of people on the kidney donation lists suffer from diabetes, and many of them have Type 2 diabetes that arose from obesity and a sedentary lifestyle. Furthermore, I felt strongly that, all things being equal, I'd like to see my kidney go to a young person who may be able to enjoy it for a long time before their natural death.

Non-directed donors have no control or input into who gets their organs. The donor is not permitted to know the identity of the recipient until several weeks after the surgery – and then only if both sides consent to the disclosure. A committee inside the hospital makes the decision about who on the list gets to be the recipient, and a confidential source I have inside the transplant department of another hospital told me that the panel is fraught with its own biases.

I read an article by Virginia Postrel, a libertarian writer who I respect greatly, who donated a kidney to her friend-in-need. The article was cleverly titled, "Here's Looking at You, Kidney," and here is the link:
http://www.dynamist.com/articles-speeches/opeds/kidney.html

In the body of her excellent article about the process, Virginia mentions a website called http://www.matchingdonors.com/ where people in need of organs (kidneys mostly) post their profile and story in hopes of finding a donor.

It's a bit creepy since the site resembles Match.com or other dating sites. Yet unlike Match.com, in a successful Matching Donors hook-up, you don't get lucky on your "date" and you wake up missing a piece of yourself, which, come to think of it, recalls my single dating life more than I care to remember.

In the world of Bioethics, sites such as Matching Donors are very controversial because they tend to reward people with the best self-marketing skills rather than with the greatest medical need. A lifetime ad on the site soliciting donors costs the recipient about $600. On the other hand, non-directed donorship strips the donor of any input whatsoever into the 'who gets my guts" decision, and that strikes me as quite unfair.

I spent some time searching the Matching Donors site until I found the posting of a Chicago woman named Brenda. Here is the link to her posting (although I expect this link to disappear soon):

http://www.matchingdonors.com/life/Donor/search.cfm?page=position-description&JobID=%24%22%2DDL10%20%20%0A&CFID=20518&CFTOKEN=74342971

I also found a You Tube video about Brenda that I'll post below:

The direct link is:
http://www.youtube.com/watch?v=YjP4gSBvGHs

I felt a great deal of empathy for Brenda. She is young, non-diabetic, and works in law enforcement as a domestic violence court victim advocate for our local prosecutor's office. She's also experiencing severe kidney failure combined with complications arising from dialysis.

I continued to struggle with the dilemma of non-directed donorship vs. finding my own recipient on the web. My wife and I discussed the morality of "playing God" and deciding who lives and who dies. Finally, I decided to go with Brenda for the following reason: if I had let the hospital pick my recipient, I would've hoped that the recipient's personal story be just like Brenda's story. Given that reality, the final decision was easy.

I reached out for Brenda via email and began a dialog with her and found her to be a delightful girl. We spoke on the phone, and I informed her that if our blood types matched, I'd be proud to give my kidney to her. I did everything in my power to put her mind at ease, so she wouldn't feel like she was sitting through the most important job interview of her life. In any case, she passed. I continued through the clinical screening, and we appear to be a kidney match.

We have not met in person. We have a joint doctor's appointment on April 2 when we will meet for the first time.


What if Brenda's body rejects your kidney?

Then I will feel a real sadness but no regret about my decision. All I can do is all I can do. The rest is up to the doctors, God, and Brenda's body.

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