Posts Tagged ‘kidney’

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.

www.mikeneedsakidney.com (Mike needs a kidney): on loyalty, running away, and bumper stickers

October 21, 2010

“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.

Chris Klug Foundation for Organ Donor Awareness

December 20, 2009

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.

See a video of Klug training at http://www.youtube.com/watch?v=McuXm3peDV8.

My website is www.mikeneedsakidney.com.

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.

Asking for a Kidney in Different Languages

October 10, 2009

Why am I asking for a kidney in different languages?  I just thought it might increase the chances of getting one, but also, hopefully this stuff increases awareness about the problem.  Plus, it’s kind of interesting.

About 100,000 people in the U.S. are on waiting lists for organs, and about 70,000 of those are waiting for kidneys. Approximately seven people die each day waiting for organs.  For healthy people who donate, risks are minimal though there would be some pain for about a week.

I had other people translate these for me.  The only foreign languages I know are some French and a little bit of Danish.

People still have a weird idea about stuff like this.  Some of the people I initially asked to translate said yes then didn’t respond when they found out what the subject was.  I’m sure if I was selling something they’d do it, but for asking for a kidney they wouldn’t? Strange.

Health Care Reform: Obama, Autism, Mental Illness, and Kidney Disease

July 22, 2009

I thought President Obama made a good speech tonight on the case for national health care reform, stating that insurance companies have too much say over who and what is covered, nearly 50 million people don’t have health insurance, 14,000 people lose their health insurance each day, and insurance premiums have doubled in the last 10 years.  Everyone should be covered, he said, and people shouldn’t be disqualified for certain conditions.  Of course, Hillary Clinton tried to reform health care – 16 years ago when Obama was 30 years old.  Something tells me this time around it will be better accepted. I hope it gets passed, but I’m not holding my breath. Anyway, there are a lot of areas that are in need of health care reform.

Autism Speaks (www.autismspeaks.org) has launched a TV ad campaign to try to combat the health care discrimination against people with autism that currently exists.  Autism Speaks aims to ensure that autism is covered in any new national health care plan.  Currently, most states do not require health insurers to cover certain medically necessary autism therapies.  Therefore, parents of children with autism have a choice to spend money out of pocket for autism therapy, or go without.  Many don’t have the choice because they can’t afford it anyway.  Personally, I always feel a little bit guilty because the work that I do (www.coachmike.net) for kids with autism ends up being mainly for those whose parents are fairly affluent because they can afford it.

In addition to autism, mental illness should also be covered by any national health care plan.  Currently, insurance companies can discriminate against people with mental illness by calling it a pre-existing condition.  According to the Substance Abuse and Mental Health Services Administration, “As many as 700,000 Americans are homeless on any given night. An estimated 20 to 25 percent of these people have a serious mental illness.”  How can we afford to cover autism and mental illness?  How can we afford not to?  The savings in the long run will more than pay off the costs in the short run.

I have a stake in health insurance myself, as my kidney disease (see www.mikeneedsakidney.com) will eventually require a transplant from a donor.  My current insurance will cover most of it, but “most” isn’t ideal since the cost of the surgery and the medications in the first two years could approach $200,000.  Think of dealing with an insurance company on the phone, then think of doing it either just before or after you’ve had a transplant.  Also, coverage ends after three years for transplant recipients even though immunosuppressant drugs are needed for a lifetime.  Needless to say, people who have the same health insurance as Congress would have everything 100% covered.The moral of the story?  Don’t get sick.

Also, see “Fun with Health Insurance” on my blog – go to the links on the right side, click, “Kidney Disease,” and scroll down to the second item.  I cut and pasted a bunch of posts I read on a kidney disease site.

On another personal note, I can say anecdotally that there is still a lot of resistance to national health care.  On match.com, I’ll sometimes communicate with women who list that they are “middle of the road” politically.  I always say that there are a couple of issues that I feel strongly about.  The first issue is the environment.  I’m for a clean one.  I believe that a lot of diseases, disorders, and deaths occur because of pollution in the environment.  The second issue is health care.  I say that I believe that everyone should have a fair chance at affordable health care regardless of whether they are rich or poor, healthy or sick.  I don’t say much more or less than that.  A bunch of times I’ve gotten a response from women, even in relatively liberal Maryland, Washington DC, and Northern Virginia similar to this one:  “Wow.  Maybe we shouldn’t meet.”*** – see below

You wouldn’t say that only certain people should get schooling paid for, or that only specific areas should get libraries, or that roads and bridges should be built and maintained in some areas but not others.  But somehow, it’s ok to say that some people should get health insurance and others shouldn’t, or that some people should get their health insurance terminated for pre-existing conditions.

*** Update, 7/25:  This is an actual email exchange from today, word for word, nothing left out.  When I saw her response I thought I must have provoked it but here is exactly what I wrote, followed by exactly what she wrote.  If anything, my initial email was pretty boring and a little uninspired, but certainly not inflammatory in any way.  So maybe health care reform doesn’t have much of a chance.

What I wrote:

“Hi. I liked your pics and profile. I like MD too. Would you like to meet sometime? There’s one thing. With the health care stuff you do and the middle of the road politics, what do you think about everyone deserving a fair chance at good health care? If you agree with that then you agree with me. anyway, let meknow what you think.

mike”

What she wrote back:

“Definitely probably not a good match then. I do not feel like paying for peoples’ health insurance who are too lazy to work and usurping the welfare system. Living in Baltimore, I already see this and it will only get worse. Also, I have seen first hand in other countries who have universal health care… the length of time it takes to get a doctors appointment and hopefully get the doctor you want. I can lead to unsatisfactory health care. Obama said it will not come off of the backs of the middle class but I do not believe that for a second. You want to pay for everyone elses healthcare? Go for it! I guess some of my views are more Conservative, this is one that I do not want to ruin my happy little employed life. I do feel sorry for those who have lost their jobs and I do think that there could be a package of some sort to help those folks, but other than that, I do not feel like paying for worthless slackers and people who do not choose to make their lives better. I certainly do not want to start a political debate with you, so please let’s not go there, but I have strong views on this and I do not want to get screwed anymore than I already have been. I already pay a huge amount of taxes and they do not seem to care that I am a single women and just barely scraping by. I am sure you will send a wonderful email back, so instead of having to bare hearing I am just going to block you. Good luck in your search and there are plenty of women, perhaps lower class that will agree with you… or you may just want to stick to DC because Baltimore women (at least the ones I have talked to) are on the Conservative side of this topic. I wish you all the luck in your search!”

Maybe it was a Freudian slip when she said, “I can lead to unsatisfactory health care.”

On the bright side, she does seem a little fiery.  :)


Follow

Get every new post delivered to your Inbox.