Posts Tagged ‘waiting list’

The Grinches who stole my kidney transplant

November 28, 2010

About a month ago, I lost my health insurance.  Within three weeks, I had gotten it back.  Just a few days after I notified Washington Hospital Center that my insurance was gone, they took me off the kidney waiting list.

They claimed I was kicked off the list not just because of a lack of insurance but also because of non-compliance – that I should already be on dialysis.  But it seems a little suspicious that I was on the waiting list for two and a half years (see www.mikeneedsakidney.com) and then a few days after I notified them that I’d lost my health insurance, they took me off the list and wouldn’t put me back on even after I told them my insurance was reinstated.

After spending three weeks getting my health insurance back, I’ve now spent another week trying to get back on the WHC waiting list.  It seems I’d have a better chance getting one from the Wizard of Oz (on TBS right now).  (That reminds me, one of the great signs was put up years ago on a beltway overpass before the Mormon Temple.  The sign said, “Surrender Dorothy!” since the temple looks like the Emerald City).  At least there’s a better chance of getting a kidney there that than going back to the Wicked Witch of the West (WHC).  Though I just saw the scene where they go to the Wizard and his assistant says, “Go away!”

Then there are the lyrics from the song “Tin Man” by America:  ”Oz never did give nothing to the Tin Man, That he didn’t, didn’t already have.”  Luckily, I’m still on another list, and if I get a donor, the list will be irrelevant, though there is a scenario in which being kicked off the list would cost me my life.  

Hospital drops transplant patient from kidney waiting list because of loss of insurance

November 18, 2010

So the health insurance saga continues.  It has been almost three weeks since I haven’t had insurance.  I’ve contacted the White House, the governor, my congressman, the Maryland Attorney General’s Office, the Maryland Insurance Administration and the Joint Commission on Health Care Organizations, plus many more organizations that I don’t have time to mention.

So the hospital dropped me from the waiting list for a kidney transplant because I don’t have insurance.  It’s like an episode of Curb Your Enthusiasm only not that funny.  Whatever can go wrong will.

I even faxed a bunch of documents today and the fax said it went through and the recipient says they didn’t get it.  Same with scanned and emailed PDF documents.

As for the “Medical non-compliance” part, they claim that I should be on dialysis by now, though I can’t get on it without insurance.  It’s just a way to drop me once my insurance terminated.

One thing is clear — the Obama health care plan didn’t go far enough.  The law made it illegal for insurance companies to discriminate against people with pre-existing conditions…starting in 2014.

In Maryland, there is a new law that states that you can’t talk on the phone while driving.  What if they said, “Here’s the new law…but it doesn’t go into effect until 2014.”  At some point a law was also put in place that required people in cars to wear seat belts.  What if they said the law doesn’t go into effect for another four years?

I’ve spent the last two weeks working on this and there’s no end in sight.

It’s just typical how people will kick you when you’re down.  It’s not, “What can I do to help you get health insurance back?” it’s, “Oh, you lost your insurance?  We have to let you go.”  It’s amazing how fast they cut me loose.  It’s like an athlete having an injury, so he’s temporarily no longer any good to the team, so he gets cut.

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.

Asking for a Kidney on YouTube in English, Danish, French, and…Australian?

November 11, 2009

I have a new kidney video up at http://www.youtube.com/watch?v=-1u-rPIP6sw.

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 http://www.youtube.com/watch?v=-QU7TPvIQMI.  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: http://www.youtube.com/watch?v=bDbIw1d8XLM&feature=related.

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.

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.

www.mikeneedsakidney.com

March 24, 2009

One of my websites is www.mikeneedsakidney.com.  It’s pretty much self-explanatory.  I have kidney disease, I’ll need a transplant within the year, and I need a donor.   All the information is on the site.  

Anyway, a couple of points about the website:  It may seem unusual to create a site like this.  In fact, I’m only aware right now of a couple of other similar sites. Here they are – an 11-year old girl needs a kidney: http://nadianeedsakidney.weebly.com/, and a man is looking for a kidney:  http://www.ineedakidneynow.com/.   I’m sure there are a bunch of other sites I haven’t come across.

I think in the future, though, people will use the web a lot more to ask for kidneys and other organs.   They’re already using You Tube (see some examples below).  Anyway, the alternative if you need a donor and don’t have one is not getting one, or waiting to get one from a deceased donor from the waiting list, and that could take more than five years.  During that time, some people survive on dialysis, while others don’t make it. 

While I try to use a bit of humor on the site, it’s not intended to make light of the subject.  I just think it can be funny to have the contrast of something really serious and then something unexpected.  Same deal with the video I’m going to put up on www.mikeneedsakidney.com soon. 

Besides trying to get a donor, hopefully another result of the site will be to increase awareness of organ donation.  The site will have been worth it if even one person who sees it decides to donate to someone who otherwise wouldn’t have received an organ. 

The need for organs is much greater than the number available for transplantation.  More than 100,000 people are currently waiting for organs, including 76,000 waiting for kidneys.  About 7,000 people die each year waiting for some kind of transplant.  Another 2,000 are cut off from the list because they are too sick.  

See Death’s Waiting List, an editorial written by Sally Satel in the New York Times from May 15, 2006.  She says that people should be allowed to have incentives to donate, such as health insurance or funding for education.  I agree.

One site that donors can search to find people who need organs is www.matchingdonors.com.   You can also check out the National Kidney Foundation’s site at www.kidney.org for information on donating.  The site for the PKD Foundation is http://www.pkdcure.org.

As for me, I will need a transplant relatively soon but there are a lot of people worse off who are already on dialysis (which leads to death in about 20% of people per year).  This is what I wrote to someone on matchingdonors.com who had been considering donating. 

“Your decision to possibly donate is obviously really amazing.  Of course, as I say in my profile, I’ll need a transplant in less than a year.  There’s no exact science on when to do the transplant.  I had a transplant evaluation last spring (2008) and a surgeon said if I had a donor I could do it then. 

On the other hand, my nephrologist says I could wait until my GFR (approximate percentage of kidney function remaining) is as low as 8, which might not happen until late in the year.  Plus, how you feel is also a barometer and right now my symptoms aren’t too extreme.  The doctors I saw most recently at a transplant clinic said I should do it when my GFR is at about 10 – which may be pretty soon.  These are all estimates, of course.  Right now it’s at 11.  See my chart at http://www.mikeneedsakidney.com/graph.php.

If I wait too long, I may be too sick and the chance of success could be smaller.  On the other hand, I don’t necessarily want to rush into it because post-transplant I’ll have to take immuno-suppressant drugs for the rest of my life which have side effects, though those risks are obviously much better than having kidney failure. 

At least one medical person advised me to have the transplant as soon as I have a donor; another says get as much out of your current kidneys as you can before doing it.  Another factor is that I’m trying to get a federal government job which would give me better health insurance than I have now that would cover 100% – as of right now my insurance covers 80% - and it usually takes a while to get these jobs.  (Either way the donor’s medical expenses are 100% covered by my insurance). 

Anyway, the point is that you may choose to donate for someone who is desperate now (already on dialysis).  But for such a big decision, you should also do it for someone who you really want to do it for.”

Here are some news stories or videos about people in need of kidneys:

·      A 7-year old girl with PKD asks Santa for a kidney:  http://www.11alive.com/rss/rss_story.aspx?storyid=125026; her mother’s blog:  http://www.kidneysandeyes.com/

·      A 38-year old woman in Israel asks for a kidney:   http://www.youtube.com/watch?v=sWGGmOJHoW8

·      A musician seeks a kidney: http://davidrosam.co.uk/2009/01/23/david-s-ware-is-ill-seeking-a-kidney/

·      People pass out flyers at convenience stores to try to get a kidney for a friend: http://www.youtube.com/watch?v=7eup4MY9yWI&feature=related

·      A man with diabetes asks for a kidney: http://www.youtube.com/watch?v=uISjKPRUKJc&feature=related

·      A 36-year old man asks for a kidney: http://www.youtube.com/watch?v=8cYokW6QMIw&feature=related

·      A video asks for funds for a little girl’s kidney transplant in the Philippines:  http://www.youtube.com/watch?v=ThI_Ki5kYAA

Stories about donation

·      A mother donates a kidney to her baby daughter: http://www.youtube.com/watch?v=R3Td0zocTG4&feature=related

·      A baby gets a kidney transplant:  http://www.youtube.com/watch?v=0ZoARC1_mwA&feature=related

·      A video about a successful transplant with “So Far Away” by Staind (one of my all-time favorite songs) playing in the background http://www.youtube.com/watch?v=KUcAfVfM7ok&feature=related

·      A daughter donates a kidney to her mother: http://www.youtube.com/watch?v=lGz0Bg-Zw9o

·      Wife of pro basketball star Alonzo Mourning does a Public Service Announcement (Mourning had a successful transplant): http://www.youtube.com/watch?v=ibCh1i_T2Pk

·      A woman describes what it was like to donate: http://www.youtube.com/watch?v=oynBMHhlG98.


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