Posts Tagged ‘www.kidneyregistry.org’

Kidney Stuff

December 29, 2009

Just an update on the kidney stuff.  I’ve written all this before but you have to dig a little deep in the blog to find it so I’m going to repeat some of it.

My website www.mikeneedsakidney.com tells the story.  I have a genetic kidney disease, polycystic kidney disease, for which I’ll eventually need a transplant or dialysis.  Since transplants result in a better quality of life as well as a better success rate, that’s the direction I want to go.  Doctors say I’ll need one relatively soon.  I predict I’ll need one sometime in 2010.  You can track my progress on the graph on the site.  My symptoms aren’t that severe — just general tiredness so far.

A kidney from a living donor usually does better than one from a deceased one from the waiting list, though at some point you can’t be too choosy. Worst case scenario, if I don’t get one from a living donor, I’d simply go on dialysis for a while and then get one from the waiting list sometime between now and 2014.  There are some people that get by on dialysis ok and don’t find it that bad other than just feeling a little tired and sick, and they just continue on working at their normal jobs.  Others eventually go off dialysis and choose death instead because it’s so bad.  I don’t know how many people do that but some do.

All the stuff I’m doing — the website, the blogs, and the videos on YouTube (search on Mike Frandsen, coach mike, kidney transplant, dialysis, etc.), may seem a little over the top, but they’re designed to raise awareness for kidney donation.  In some cases some of the stuff is meant to be  funny.  My other site, www.coachmike.net, was also designed more to raise awareness — about methods of autism therapy than anything else. I believe in what I wrote on the site three years ago just like I believe in this.

I want to raise awareness not just for me but for others too.  I recognize that there are a lot of people worse off than me.  PKD isn’t as bad as some other problems that cause kidney failure.  There are more than 80,000 people waiting for kidneys and more than 11 of them die each day waiting.  I’m not on dialysis yet — dialysis can be extremely taxing and many people die on it.  So I usually say on the videos, blogs, and website, go to www.matchingdonors.com or www.kidneyregistry.org.  Already, over a thousand people have viewed my videos, blogs, and website.  Maybe a few of those people will eventually donate to people in the future when they know someone who needs a donation.

A lot of people aren’t aware of the basics of kidney donations and transplants so I suggest to people just going to Google and search on those terms and just spend five minutes reading up on it.  Search on “dialysis FAQs,” “kidney donation” or “kidney transplants.”

At the end of this process, I hope that people will know more about the need for and the process of kidney donation.  Donors only need one of their two kidneys as long as they’re in good health.  You can be out of the hospital in a day or two.  Of course, it does take a while longer to recover and get back to work.

Once the recipient gets a kidney, he or she has to take immuno-suppressant drugs forever to minimize the risk of the new kidney being rejected, but other than that, lives a normal life.  In fact, Sean Elliott and Alonzo Mourning both played in the NBA after having kidney transplants.

Dirtbags Perform “Get a Kidney” and “Put Russ Grimm in the Hall of Fame” outside FedEx Field before Redskins-Saints Game

December 8, 2009

The Dirtbags, the Official Rock ‘n’ Roll Band of the Redskins Appreciation Club (RAC), played in the parking lot of FedEx Field before the Redskins-Saints game Sunday.  They played their new song, “Get a Kidney” for organ donor awareness, along with old favorites like “We are the RAC” and “Navajo Rug.” 

The Dirtbags agreed to play the song in support of my search for a kidney donor for a transplant I’m expected to need in 2010 (see www.mikeneedsakidney.com).  Redskins fans stick together.  The Dirtbags are, from left to right, Lefty, Whiskey Sergeant Major, and the President. They let me sit in on drums. It was a great time.  The Skins lost to the undefeated Saints in overtime, 33-30 but put up a good fight.

I hope to get a kidney for myself and also raise awareness for kidney donations in general.  There are 80,000 people on the kidney waiting list  in the U.S. and more than 10 of them die every day waiting. Most of them are worse off than me and many of them are already on dialysis.  To donate to someone, check out www.matchingdonors.com or www.kidneyregistry.org.

The Dirtbags also played their classic “Put Art Monk in the Hall of Fame.” Now that Monk is in, the second half of the song was changed for Russ Grimm to get into the Hall.  Grimm is up for a vote in January 2010.  Here it is:

 See the website for the RAC and the Dirtbags at www.ontherac.com.

DirtBags to Perform Song for Kidney Donor Awareness at FedEx Field before Skins-Saints Game

December 2, 2009

FOR IMMEDIATE RELEASE

CONTACT: Thomas Warren

President, RAC

www.OntheRAC.com

www.mikeneedsakidney.com

Redskins’ Fan Club Bands Together to Raise Awareness for Organ Donations

Landover, MD – The DirtBags, the house rock’n'roll band of the Redskins’ Appreciation Club (RAC), will debut their new single Draft a New Art Monk (Get a Kidney Too) (see http://www.youtube.com/watch?v=7Xls6-uBZSA) at a live concert in the FedEx Field parking lot at 11am Sunday December 6th to raise awareness for organ donations.

The #1 Redskins fan club in the Washington/Metro area, the RAC was enlisted by “Coach” Mike Frandsen to record the song to help him find a kidney donor.  Frandsen has polycystic kidney disease and will be in need of a kidney transplant in 2010.

“The world needs to know that Redskins’ fans stand by their team, and their team’s fans,” said Thomas Warren, RAC President. “There is too much negativity these days.  But we’re not down.  We’re united in two things:  Rooting for the ‘Skins and helping Mike get a kidney.  That’s all we care about.”

The concert will feature The DirtBags, with “Coach Mike” on the drums.  The DirtBags play a fun blend of country/rock’n'roll and feature classics such as Art Monk for the Hall of Fame, Rocky Ain’t Real, and the RAC Fight SongArt Monk for the Hall of Fame is currently ranked sixth on YouTube for Art Monk with over 3,100 hits.

“Coach Mike provides one-on-one support to children with autism.  His is dedicated towards helping others,” said Warren.  “Mike is in need of help.  Please see www.Mikeneedsakidney.com to see how you can help.  He does so much for others.  This is the least we can do.”

Coach Mike wants to remind everyone that there are 80,000 people in the U.S. waiting for a kidney transplant and many of them are worse off than him.  He recommends that people who are interested in donating a kidney to someone visit www.matchingdonors.com or www.kidneyregistry.org.

The concert will be held at A61 in honor of Casey Rabach, the team’s center.  A61 is located in the A section of the Green Parking lot.

For more information: www.mikeneedsakidney.com or www.OntheRAC.com or

Contact: Thomas Warren

Phone: 703-984-9015

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It Really Would Be Nice If We Never Had to Dialyze…

November 3, 2009

Here’s my new video asking for a kidney donation: http://www.youtube.com/watch?v=-QU7TPvIQMI. It’s based on Coolio’s song “Gangster’s Paradise.”  (Do a youtube search on that to see the original video, which is great).  I’m looking for a kidney donor for a transplant that I’ll need in 2010 but the purpose of the video is also to raise awareness for kidney donation for others in need of a kidney.  I’m probably the least likely person around to do a rap and to sing, but I did my best (which wasn’t that great) and it was a lot of fun.  Special thanks to Martine Marshall who also appeared in my first kidney video (http://www.youtube.com/watch?v=bDbIw1d8XLM). Thanks too to Liz Riker for producing.

(Wow.  I just looked at the video.  I look pretty serious.  I was originally planning to do one that was more upbeat but I thought this song fit best for now.  Any future ones will be more fun.)

As of October 26, 2009, my kidneys are functioning at 9.1% and getting worse.  I have a genetic disease called polycystic kidney disease.  See www.mikeneedsakidney.com for updates.  Although I’m not on dialysis, my doctors are urging me to get ready for it now.  I’m hoping to go directly to transplant because the outcomes of transplants are much better when the recipient hasn’t yet been on dialysis.

I admit that the idea of asking for a kidney in a video or on a website seems unusual, but 15 years ago the idea of meeting someone to date from the internet seemed strange, and now some people get married by meeting that way.

So in the video I mention that in the U.S. there are 80,000 people waiting for kidneys and ten people die each day waiting for a kidney.  The average time on the waiting list is three years but it’s five years if your blood type is O.  Also, kidney transplants from the waiting list are statistically less successful than those from living donors.

If you want to donate to someone, here are a few websites to check out:

Here are a couple of sites on organ donation:

Or just google “donating kidneys” and see what comes up.

For healthy people, the risks are minimal to donate.  Everybody has two kidneys and only needs one.  The operation results in some pain, but the donor is out of the hospital in one or two days.  All the medical expenses are paid for by the recipient’s insurance.

Again, this isn’t just for myself.  I hope to raise awareness for the problem.  It’s like for my other website, www.coachmike.net.  The main goal never was to get business for myself – I’ve turned down way many more clients than the number who I’ve actually worked for – and I’m very unlikely to add anyone else.  Part of the goal of coachmike.net was to raise awareness about autism and my philosophies of what works best.

Anyway, if I can get a donor, that moves everyone else on the list behind me up one spot.  If a couple of others ultimately decide to donate because of a website, a video, a blog, or a bumper sticker, then that moves another couple of people up the list.  And if a couple of people get the seed planted in their heads and donate five, 10, or 20 years down the line, then that helps as well.  So think about that if this seems at all unorthodox or even distasteful to you.

I write like I speak — candidly, honestly, and directly.  Some people don’t like it because it’s not always diplomatic or politically correct.  But just remember that your friends are the ones who will be honest with you rather than just telling you what you want to hear.

I must have met a bunch of people in the last few years who are really into dog rescue programs, which is great.  I just wish people treated people equally as well as they treat dogs.  Not necessarily better, just equally as well.  We also place a higher importance on recycling tin cans than donating organs.

Besides the music, I borrowed a lot of the lyrics for the video from Coolio.  I also snuck in a couple of lines that were tributes to two of the best, earliest and most influential rap songs of all time — “Rapper’s Delight” by the Sugar Hill Gang and “The Message” by Grandmaster Flash and the Furious Five.  I even got a reference to Len Bias in there.


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