Posts Tagged ‘polycystic kidney disease’

www.mikeneedsakidney.com: New summary about donating a kidney

November 7, 2010

I’ve rewritten the first part of my website, www.mikeneedsakidney.com:

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.

Dirtbags Jam to Help Coach Mike: “It Doesn’t Take a Lot of Analysis to See that it’s Best to Avoid Dialysis”

November 23, 2009

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:  http://www.youtube.com/watch?v=7Xls6-uBZSA.  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 http://www.youtube.com/watch?v=CNCSHC1fsoo.  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!

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.

mikeneedsakidney.com

October 5, 2009

By Mike Frandsen

Here is a draft for a video I’m planning to do later this month.

My name’s Mike.  I’m looking for a donor for a kidney transplant that I’ll need at some point, most likely in 2010.  I have polycystic kidney disease.  If you go to mikeneedsakidney.com you can project approximately when I’ll need it.

I plan to have the transplant in Washington or Baltimore.  All the medical expenses of the donor will be covered by my insurance.

I still work on a limited basis – I have no problem working for three hours at a time – but after that I get tired easily, and my symptoms are getting worse.  For the past 5 years, I have been teaching academics to kids who have autism, and I first started teaching sports to them more than 10 years ago.  See coachmike.net.

I’ve been on the waiting list for a year but the average wait is 5 years.  Outcomes are better with living donors anyway.  The alternative would be dialysis but there’s a slight chance of death on dialysis during the first year, and on average it gets worse during each subsequent year.  Meanwhile a transplant would hopefully last the rest of my life.

The chance of success for a transplant is expected to be very high.  I would be as good as new and just have to take medication.  I plan to get married and have kids someday, and have grandkids as well.  Alonzo Mourning and Sean Elliott played in the NBA after having kidney transplants.

So a kidney donation could ultimately be the difference between dialysis, which could potentially lead to death, and having a long, normal, healthy life.

Everybody has two kidneys but only needs one.  The donor might have a good deal of pain afterwards but it should go away within a week and you should be able to get back to work within two weeks.

You can Google information about the transplant process and probably learn a lot within 10 minutes.

You should be blood type O, although if you are not, there is still the possibility of a paired donation.

I know this is a lot to ask but it would be an amazing gift.

Thanks a lot.

—-

So that’s my draft script for the video.   A couple of other points – people are always asking me when I’ll need the transplant.  As it says on my site, I’ll probably need it when the function dips to about eight percent.  As for when that will be, you can take a look at the graphs.  The line isn’t likely to change much from what it has been in the past.  Past performance isn’t necessarily an indicator of future results in the stock market, but in kidney disease, it usually is.  However, I still hope to wait as long as possible before having a transplant.  Maybe I’ll get lucky and things will stabilize for a while.

Click here for a graph that shows my kidney function over the last several years. Just below it is a graph showing 2008-2009.  It is remarkable how resilient the kidneys are, but at some point the toxins become too much for the body to handle.

One thing I don’t understand is that people think that the deterioration of the kidneys should always happen at the exact same rate, so they are surprised at any changes in the slopes of the graphs.  There are fluctuations in the graphs that show a few small peaks and valleys but the general trend remains the same.   Anyway, if you can read this blog you should be able to read and interpret the graphs.

Nothing has changed – the rate of decrease is about the same as it has been for the past several years.

I’m open to suggestions about the wording above or the process in general if anyone wants to give me any.

I know it seems awfully serious, but I’ve tried to lighten the mood a little bit with the first kidney video:  Mike Needs a Kidney.

On a lighter note, the Redskins won yesterday (though it was an ugly game), my fantasy team lost, and the Broncos beat the Cowboys on a great play near the end of the game, so two out of three’s not bad.  Sundays are the best.


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