This is my blog. So far most of the entries are about sports. Please check out my autism site at www.coachmike.net and my photography site at www.mikefrandsen.net. Please also see my sports articles at http://www.examiner.com/sports-in-washington-dc/mike-frandsen and http://bleacherreport.com/users/583899-mike-frandsen, my autism articles at http://www.examiner.com/dc-in-national/mike-frandsen, and www.myredskinsblog.com. By Mike Frandsen.
There are more than 80,000 people in the U.S. on the national waiting list for a kidney, and more than 11 people die each day waiting. If you want to donate a kidney to someone, a couple of great sites are
http://www.matchingdonors.com and
http://www.kidneyregistry.org . You can also contact your local hospital.
I’m in need of a kidney too, but there are a lot of people worse off than me, who are waiting for kidneys and are already on dialysis, which results in an approximately 20 percent chance of death each year. (For me, the percentages of death from dialysis would likely be considerably lower, because I’m relatively young (40), otherwise healthy, and the problem that has resulted in my kidney failure is polycystic kidney disease (PKD), one of the “best” ailments to have among all the problems that cause kidney failure). I’m not on dialysis yet, but if I don’t get a donor very soon I’ll have to get the surgery to prepare an access in my arm for dialysis. I’ve been avoiding that because I don’t want to get that surgery unless it’s absolutely necessary, and of course I want to avoid dialysis, which can be a grueling experience.
There is a national waiting list, but there are two problems with it. 1) The average waiting time is five years (I’ve accrued 2.5 years of waiting time). 2) Kidneys from the waiting list come from deceased donors. These kidneys, while life saving for many people, on average last considerably shorter than those coming from live donors, and there’s also a slightly lower chance of the operation being successful.
Everyone has two kidneys and only needs one, and statistics show that people who donate kidneys live longer than those who don’t. This can partly be explained by the fact that people need to be healthy in the first place to donate. The process of getting tested usually involves filling out a questionnaire, getting lab work done locally, and ultimately traveling to the recipient’s hospital to get approved. Donors only spend two days in the hospital, though the recovery period may last a few weeks. All the expenses are covered by the recipient’s insurance. Most transplants are successful, with the recipient living a normal life other than taking lifelong medications to minimize the possibility of the body rejecting the organ. Quite honestly, my physical symptoms are not very severe, but the numbers don’t lie, and I have 6.7 percent of my kidney function left and it is falling, as you can see by the graphs at www.mikeneedsakidney.com. Many people get transplanted with much more kidney function remaining than I have left.
“Hi Mike, I just got off the phone with xxx from xxx, they are not going to let me donate. I am so upset. they said my GFR is too low, it was at xx and they said that a person of my age should be closer to xx. I dont know what to do. I am sorry. I am kind of in shock right now. but I wanted you to hear it from me. she will be contacting you as well to let you know, I dont know, I feel pretty numb right now. I am sorry.”
“Mr. Frandsen,
I was given permission by xxxx to let you know that she has been ruled out as a living kidney donor candidate due to the results of her kidney function tests. She was very disappointed as I am sure you are as well.
If you have other donors who would like to be tested please have them call our office.”
The first quote is from the person who was going to be my donor. The second is from the contact at the hospital.
My kidney function has fallen to 6.8 percent. The latest graph at www.mikeneedsakidney.com should reflect that when I get it updated in about a week.
Why am I so up front about all of this? First, of course, to get a kidney donor. Getting one from the list may take a few more years, and even if I get one from the list, they usually aren’t as good as ones from live donors. And I definitely want to avoid dialysis.
But another reason I do all this, including all the videos on www.mikeneedsakidney.com, is to try to create awareness. There are 80,000 people on the kidney waiting list in the U.S. and more than 10 people die each day waiting. Donating means going through a bunch of tests, then spending about a day and a half in the hospital to recover from the surgery, though the donor would be out of commission for a little while after that. And people who donate live longer than those who don’t. Of course, that’s partly because you have to meet a certain threshold of health to be eligible to donate.
Anyway, one of the things I’ve learned throughout this process is that you can tell a lot about people. I feel like Adam after he ate the apple. I’ve lost my innocence and I’ve gained knowledge, but I wish I didn’t have that knowledge. “Knowledge” meaning what people are really like. So how they are when times get tough becomes magnified in a situation like this. If someone is loyal, that becomes magnified. If someone runs, that becomes amplified.
I’m not suggesting that people need to donate, offer to donate or even consider it to be loyal. But some people refuse to even respond to an email when all it would take would be to say something as short as, “Good luck.” Others don’t even reply when you ask them to do something as simple as putting a www.mikeneedsakidney.com bumper sticker on their cars.
The worst is when you go out of your way to help someone for eight months and then they betray you. So that’s very discouraging and I can’t believe I’m getting more jaded at 40 and less optimistic about people than I was before. But I got over that, mostly, a long time ago.
On the other hand, it says a lot when someone does take 30 seconds to write in an email, “I hope it works out.” It’s very interesting and enlightening to see which people are loyal and honorable, and which ones would curl up in the fetal position and run away during a crisis.
Still, I’d rather not know who is loyal and honorable and who isn’t. I’d rather just give everyone the benefit of the doubt. But it’s too late for that.
I’m starting to feel the affects of kidney disease.
I’m not that concerned that people are hopelessly uneducated about kidney disease, that they don’t know even the basics about transplants.
I’m not even that concerned that people won’t spend a day and a half in the hospital to donate a kidney that they don’t need to save someone’s life.
What does bother me is the aversion that people have to basic math. I put a graph up on my website, www.mikeneedsakidney.com, that shows the progression of the disease, and yet nobody will look at it. I don’t know any more than can be figured out from the numbers. Any fourth grader should be able to interpret the graph. Take a ruler or even imagine where the line will go, and when it will reach the number when I’ll need transplant or dialysis. That number is listed on the site.
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.
The Chris Klug Foundation (
http://www.chrisklugfoundation.org/ ) for organ donor awareness held its fourth annual Summit for Life event December 12. More than 350 people climbed 3,267 feet to the top of Aspen Mountain to raise awareness for organ donations.
Klug is a World Cup snowboarder who had a liver transplant nine years ago. Klug won a bronze medal in the 2002 Winter Olympics in Salt Lake City, becoming the only organ transplant recipient to compete in an Olympic Games. Klug is the author of To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder.
Klug also had a sixth place finish in the 1998 Winter Olympics in Nagano, Japan, four World Cup victories and five National titles. Klug still competes internationally and plans to be at the 2010 Winter Olympics in Vancouver, Canada.
Me with Chris Klug at the 2009 Johns Hopkins Transplant Conference
I had a chance to meet Klug at the Johns Hopkins Annual Transplant Conference last summer. I was also supposed to meet with a nurse after the conference to discuss details about paired donations, but I left early to get back to one of the kids I was supposed to work with. Next time, I think I’ll stay at the conference.
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.”
Kidney Song – Dirtbags and Coach Mike
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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:
Dirtbags – Monk – Grimm HOF
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See the website for the RAC and the Dirtbags at www.ontherac.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
) 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 Song. Art 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.
I’m looking for a donor for a kidney transplant that my doctors say I should have relatively soon. I have polycystic kidney disease. Please see www.mikeneedsakidney.com for more details.
Check out this song the Dirtbags did for me:
. The Dirtbags (
http://ontherac.com/dirtbags.htm ) are the official rock band of the Redskins Appreciation Club. They play in the parking lot of Fed Ex Field before every Redskins home game.
We included in the song a mention of the fact that 80,000 people are on the waiting list for a kidney in the U.S., and more than 10 of them die each day waiting, so the song isn’t just for me but to promote awareness about kidney donation in general.
A lot of those people waiting are much worse off than me because I’m not on dialysis yet. I’m hoping to go directly to transplant. That’s what the doctors recommend if possible.
If you want to donate to somebody, a couple of great sites are www.matchingdonors.com and www.kidneyregistry.org. Everybody has two kidneys and only needs one. After donating you can be out of the hospital in less than two days.
The songs says the Redskins need to draft a new Art Monk, and I need to get a kidney transplant. One of those things is unbelievably important, and it would be really great if it happened.
Of course, the other thing, getting a kidney, is important too.
That’s me in the back of the video on drums. The Dirtbags are also going to perform the song before the Redskins-Saints game December 6 in the parking lot at Fed Ex Field in the Green lot, A 60, two hours before kickoff. I’ll be in the back doing a little bit of drums, hoping I don’t mess up the music. These guys are good, with the President on guitar and vocals, Whiskey Sergeant Major on guitar, and Lefty on bass.
I first heard of the Dirtbags after they did a song about putting Art Monk in the Hall of Fame. See
. It was classic and it got more than 3,000 hits on You Tube. Funny, Peter King changed his tune after that one.
Anyway, just google “becoming a kidney donor” and read up on it for a few minutes. Maybe you’ll decide to donate to somebody, if not now, then maybe at some point in the future.
All this stuff like my website and the videos may seem a little bit unorthodox but the goal is to create more awareness.
Thanks for reading and thanks again to the Dirtbags. I appreciate it. HAIL!
In this one, I ask for a kidney donation for a transplant that I will need because of polycystic kidney disease. I mention www.mikeneedsakidney.com and how my kidney function is dropping pretty fast.
Just to do something different, I ask for a kidney in English, Danish, and French. Then I ask for one in an Australian accent. It’s not that I expect or want the donor to be Danish or French; it’s just that those are the only other languages I know a little bit. I had a lot of help with the translation. It may seem a little bit unorthodox, but I just thought it would be a different, interesting thing to do, and I hope that everything I do creates a little more awareness about kidney donation.
I think a lot of people aren’t very aware about kidney transplants and donation. Highly educated people ask me questions that show this.
People who are healthy can donate one of their two kidneys and get along fine, and even be out of the hospital in as little as a day after the surgery, which is done laparoscopically with a small incision. It does take a while to get back to work.
Kidney disease gets less publicity than other diseases or disorders. Part of the reason is that it disproportionally affects poor people who often don’t check on their hypertension and diabetes until it’s too late. Part of the reason for that is because many indigent people lack adequate health insurance. Maybe it will get more attention in the future. Ten years ago there wasn’t much awareness about autism and now there is.
In the video I mention that I’m not just looking for a kidney for myself, but I’m also trying to raise awareness about the fact that there are 80,000 people in the U.S. waiting for kidneys and more than 10 of them die each day waiting.
That’s why I did my previous kidney video at
. I’m a terrible singer and rapper, so naturally I had to do a rap video.
And while I’m at it, I might as well give a plug for the one I did in the beginning of the year:
.
For the new video, it was hard to choose from the three takes that I did, because they were all equally bad. I almost fell asleep while watching the video.
***
Quick timeout for Coach Mike’s Mailbag:
Really? It looks more like you fell asleep during the video.
Ha ha. Very funny.
By the way, when are you going to make another movie? Last time I saw you was more than 20 years ago in “The Breakfast Club,” “Sixteen Candles,” and “Weird Science.”
Very funny. Everybody’s a comedian…
At one point you say you are going to “attempt the Danish now…” It’s not like this is a motorcycle jump or a magic trick.
True. Those would have been easier.
(Actual email:) I couldn’t watch your new video it was so boring. Now people won’t watch the good rap one cause they’ll first be bored by your new one and move on. You also are totally repetitive in your blog. You already explained all this. Couldn’t you have left the other one for awhile without adding a new crappy one. And why do you keep saying what a bad voice etc. you have. The whole point is that you need a kidney. Otherwise you could have gotten a professional rapper to do it. You’re really bugging me.
Sorry, Mom. Couldn’t you have called about this instead of emailing? (just kidding. the email was from one of my fans).
Shouldn’t people donate to, say, a single mother of three kids who is already on dialysis instead of an attention-seeking narcissist who refers to himself in the third person? I’ll hang up and listen to your answer.
Let me take the second part first. Coach Mike isn’t sure who you’re talking about. However, I agree that the idea to donate to someone who is more in need is a good one. Check out www.matchingdonors.com.
***
Anyway, my next video is due out at the end of the month and it will be original.
So back to the kidney issue. At some point I’ll have to get a transplant or go on dialysis. Dialysis is a long, tiring process that cleans the toxins from the blood. While it is life saving, it results in death for 20% of dialysis patients each year.
Transplants result in a better quality of life and a better outcome than dialysis. In fact, kidney transplants are one of the few surgeries in which you can go from being extremely sick to just about as good as new, as if you never had the problem.
The waiting list for my blood type (O) is about five years and so far I’ve accrued a year and a half of waiting time. Kidneys from the waiting list come from deceased donors. A kidney from a living donor usually lasts significantly longer than one from a deceased donor. Also, people who receive transplants without ever having to go on dialysis fare better on average than those who are transplanted after having been on dialysis.
In order to be compatible to donate to someone, you have to be the same blood type, though if you’re a different blood type, you can do a paired donation. That happens when you have two unmatched donor-recipient pairs in which the recipients match the other donors, and the hospital supervises the exchange, doing both operations simultaneously or one after the other.
A couple of good sites are www.matchingdonors.com and www.kidneyregistry.org. Matchingdonors has profiles of people looking for kidneys. The National Kidney Registry facilitates paired kidney donations, in which incompatible or poorly matched donor-recipient pairs try to find a compatible match or a more compatible match from a pool of donors.
Sometimes I ask myself if I would donate a kidney to somebody in need. It would be easy for me to say yes, but the truth is we’ll never really know. I feel like I would definitely donate to a wife or a child, (though I’m not married yet and don’t have kids), and I’d also donate to a parent or a sibling. Anyone else, I’m not so sure. So in other words, I’m asking for a kidney from a stranger (or a friend or acquaintance but that probably would have happened by now if it was going to happen). Meanwhile, I’m not sure I’d do it myself. I guess you could call that hypocritical, though it’s honest.
On the other hand, I’ve been working with or volunteering for kids and adults with autism and other disabilities for more than 10 years. I believe that many of the parents I’ve met, while they do an amazing job, wouldn’t necessarily be helping kids with autism if they didn’t have kids with autism themselves.
Whenever somebody helps somebody – saves a person through CPR or rescues someone from a burning building for example – the person says that he or she is not a hero, that anybody would have done the same thing. But that’s not true. A lot of people wouldn’t have done it.
This whole thing – asking for a kidney on a website, in videos, on a bumper sticker, does seem kind of strange. It’s pretty surreal. But do you have a better idea? My hope is to get one for myself, and through my website and my videos, create enough awareness so that maybe at least one other person decides to donate who otherwise wouldn’t. And maybe 5, 10, or 20 years down the road, the seed will have been planted for someone who would someday be ready to donate to someone. Or maybe more people will fill out organ donor cards, or it will become easier to donate like it is in Europe.
