Posts Tagged ‘donor’

White House sends form letter back about urgent health insurance issue

November 17, 2010

I wrote and called the White House several times with an urgent specific issue about health insurance and got a form letter back. I lost my health insurance with the only company that covers people in Maryland with pre-existing conditions, and I will need dialysis or a kidney transplant soon.  The numbers and websites below are no good for me because I’m not eligible for any of those programs. Medicaid has a $12,000 deductible in the first six months which is totally ridiculous.

By the way, a lot of people, including those at Health and Human Services (both national and local) are under the mistaken impression that the new health care law prohibits insurance companies from discriminating against people on the basis of pre-existing conditions, but that’s not true.  The provision is only good if you are under 19 or if it is after 2014. In fact, the way the underwriting codes are written, it is literally impossible for someone born with a pre-existing condition to get health insurance except through a federal pool but you have to have not had insurance for six months.  Some states like Maryland have their own plans, making people ineligible for the federal plan, and the Maryland Health Insurance Plan was the one that terminated me because I missed a payment.  They rejected my appeal. The second appeal is in progress but they say they are too busy to get to it now.

Yesterday I spent the whole day at the local HHS and at the end of the day they finally told me there would be a $12,000 deductible for Medicaid.  I wish they had told me that last week when I was there.

Imagine if you forgot to pay your phone bill once, they didn’t give you a warning or even notify you of the termination, and then your phone service was cut off with no chance of getting any other phone service (unless you paid $12,000 first).  Well, health insurance is a much more important issue.  Without it, my donor can’t get tested, I can’t get my kidney function tested, I can’t get a procedure done to get back on the waiting list, I can’t get surgery to prepare for dialysis, I can’t get medications, not to mention that there’s always the possibility of getting in an accident or getting sick.

Here’s the White House’s form letter back:

From: no-reply@correspondence.whitehouse.gov
Subject: Thank you for your message.
Date: Tue, 16 Nov 2010 18:45:04 -0500

Dear Friend:

Thank you for writing.  I have been moved and inspired by the stories of Americans struggling with health care, and I appreciate your perspective.  It is because of the many men and women facing frustration, hardship, and financial burden in addition to significant health problems that we worked so hard to get health reform done.

After a century of striving, after a year of debate, and after a historic vote, health care reform is no longer an unmet promise to the American people.  It is the law of the land.  While some reforms will be put in place later, a host of desperately needed reforms have already gone into effect.  To learn more about what health reform means for you, visit www.HealthCare.gov orwww.WhiteHouse.gov/HealthReform.

As we work together to improve the lives of all our citizens, please know the trials and triumphs of Americans like you motivate my Administration to work even harder to overcome the challenges before us.  I am confident we will emerge from these tough times stronger than before with a renewed promise of a better future for all.

For more information on resources that may be available to you, please visit http://go.usa.gov/aIv or http://go.usa.gov/aI7 or call 1-(800)-FED-INFO.  Those seeking assistance with health care can also call the Department of Health and Human Services at 1-(877)-696-6775.

Again, thank you for contacting me.  I wish you all the best.

Sincerely,

Barack Obama

 

More health insurance problems

November 11, 2010

I’m getting a little tired of writing about the fact that the only health insurance carrier in Maryland that offers insurance to people with pre-existing conditions dropped me Oct. 31. (You can scroll down to see the other entries). But here goes with some more.

Just to recap, I was born with kidney disease and pretty soon I’ll need dialysis or a transplant.  But I can’t do any of the work that needs to be done prior to that without insurance, I can’t continue on the waiting list, and most importantly, any donors that want to get tested can’t.  Even if I had someone now and my insurance was active, there might not be enough time to stave off dialysis but without insurance it makes it much less likely that I’ll get the transplant before having to dialyse (see www.mikeneedsakidney.com).  Then there’s just the notion that it’s good to have health insurance for non-kidney related reasons.

So yesterday, I found out that my appeal to get the insurance back was rejected.  Good news, though –  I could send in another appeal. The person from CareFirst (a.k.a. CareLast) said he emailed me the notification that I was rejected.  I didn’t get it so I spelled out my email address.  I still didn’t get it so I told him to email it to my other address.  I still didn’t get it so I emailed him and he said he’d email me the notification.

I asked about the instructions and he told me that he already emailed them to me yesterday.

I finally got them and sent in the second appeal and he said he’d get to it when he got a chance.

I called one of the kidney transplant staff who said that without insurance she expects me to not survive the next year.  That’s not exactly correct because as soon as I go on dialysis I’m eligible for Medicare.  So one strategy would be to go on dialysis immediately, but the problems with that are: 1) how do I pay for the fistula surgery that is necessary to start dialysis? 2) Do I really want to start dialysis before it’s necessary? and 3) kidney transplants done on people who are already on dialysis are on average less successful than those done on people who haven’t had to go on dialysis.

Anyway, I called a bunch of places, mostly with poor results, and the congressman’s office says to wait a while, but I don’t think that’s right.

After writing all of this I realized it seemed a bit melodramatic.  Another person said it sounds like I’m panicking and that I should relax a little. But I think this is important, and there must be a lot of other people in similar situations who aren’t as articulate on paper or in writing, and who are not as persistent.  If anyone has a better approach to tackling the problem, I’m listening.

This might be the last blog on this for a while.  I went to see Yi vs.Yao last night so I’m going to write about that next.

The good news is the transplant really doesn’t seem like a big deal at all when compared with this insurance problem.

Day two of health insurance debacle

November 9, 2010

Just to sum up the situation, the Maryland Health Insurance Plan, the only plan in the state of Maryland that covers people who were born with pre-existing conditions, terminated my insurance because I forgot to pay a month.  They never gave me a warning, and never even notified me that I was dropped.  Now I have literally no health coverage, with my only option being Medicaid, but that can take up to two months to get, and it sounds like you can only make under a certain amount of money to be eligible, and it doesn’t cover as much as MHIP.

In the meantime, I need to get medication, have labwork done, have a procedure before getting reactivated on the kidney transplant waiting list, prepare for dialysis by getting surgery for a fistula if I don’t find a donor soon, and have a potential donor get tested, who can’t get tested without surgery.  Plus, it’s good to have insurance just in case something happens.

Why am I writing all of this?  1) To document the process, which might help me get insurance as soon as possible, 2) in the hope that someone might read this and have a suggestion, 3) to show people that it’s a myth that everyone can get health coverage.  In fact, it’s impossible for me to get it right now and I’m offering $150 to anyone who can get it for me, 4) It may sound corny, but I really believe in fighting for what is right and just, and 4) There are probably people out there who can’t advocate for themselves and won’t be as persistent as I am, so if I can’t get insurance as I pester congressmen, state delegates, and the White House, how can they?

Most of the responses I’ve gotten over the last couple of days have gone something like this:

  • “Oh, you’re in luck.  There is one plan that’s like a safety net in Maryland that will cover people with pre-existing conditions.  It’s called the Maryland Health Insurance Plan.”  Then I say that’s the plan that dropped me.  Then they say that’s bordering on criminal for the plan that is supposed to cover people to end the insurance and then refuse to reinstate it.
  • “Medicaid is your only option.”  But I need something now and I can’t get that now
  • “You’re really screwed.”
  • “We have rules and regulations.  It has to go through a process.  It takes 60 days…”  These people don’t really care that the situation is urgent.  It’s almost as if they take a perverse pleasure in explaining that they have to follow regulations.

So today, here are some of the things I did:

  • Called medhealthinsurance.com.  They rejected me and said they couldn’t offer me anything “today.”  I asked if they could offer anything any other day.  They hung up on me.
  • Called Health Plan One.  It took two hours on hold, but they let me know that they couldn’t cover me.
  • Called the Agency for Health Care Research and Quality.  They told me that Obamacare, the new law prohibits insurance companies from discriminating on the basis of pre-existing conditions.  I informed them they were wrong, that that only goes into effect on January 1, 2014 (it’s in effect now for children).
  • Called the National Kidney Foundation who said to call the local HHS office.
  • Made a complaint with the Maryland Insurance Administration who informed me that it would take a while.
  • Listed a comment on the HHS website requesting information about how to get health insurance.
  • Called the HHS “Office of Consumer Information and Insurance/Pre-existing Condition Insurance Plan,” who told me to try MHIP or Medicaid.
  • Contacted Congressman Van Hollen’s office, who said they would work really hard on it, but I knew I was at their mercy because there’s no other person who can represent me.
  • Heard back from someone who responded to my craiglist ad offering $150 for information that will lead to my getting health insurance ASAP. She hatches a plan that isn’t ideal but just might work.  Or not.  I agree to pay $50 now and the rest later if it works.
  • Emailed Seven on Your Side.
  • Contacted the social worker at one of the hospitals I’m working with.  She’s on vacation and has no backup.
  • Contacted the financial coordinator and left a message.
  • Contacted the financial coordinator at another hospital who had “no idea” what I could do.
  • Contacted the National Institute of Diabetes and Digestive and Kidney Diseases.  Surprisingly, they respond with links to many resources about kidney disease.  However, one of the links says, “People who do not have private insurance can work with a social worker, nurse, or doctor to locate and apply for other sources of financial aid,” which is laughable.
  • Contacted the Polycystic Kidney Disease (PKD) Foundation who suggested getting Medicaid.
  • Contacted the White House who told me to “flag hardship” in my email so it will be noticed.
  • Along the way, I also got suggestions to try Medicare, which does cover people who are on dialysis and have had transplant, but doesn’t cover those who are just a few months away from those.

One strategy is just to make sure my kidney function doesn’t go down.  One way of doing that?

Less stress.

 

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.

Kidney Disease: “You call this a storm?”

March 10, 2010

Sometimes people ask me how I’m doing in relation to my kidney disease and need for a transplant.

My kidney function is now between 8 and 9% (remaining).  See www.mikeneedsakidney.com.  I’m expected to need the transplant later in the year.

Honestly, I’m not that worried about it.  I’m confident that a donor will come through and I expect the transplant to be successful and to be back working less than two months after the operation.

Now I may change my tune a week before the transplant.  I got pretty nervous before my tonsillectomy, so I can’t predict what will happen with this one.

But right now, I’m really not concerned with it.  At all.  Maybe I’m procrastinating.  I think part of it is that I’ve been pretty busy.   And so cynical after I was backstabbed last October.  It makes the thought of the transplant seem minor in comparison.

I’m not being brave or exaggerating – I just don’t really care about it at all right now.  I’m not afraid of it at all.

I think my attitude is typified in the scene in “Forrest Gump” – number 18 on my list of 100 Best Movies by the way –mikefrandsen.org/2009/04/12/100-best-movies/ — when Lieutenant Dan was on top of the shrimping boat.

(By the way, “Hastings” from “24” is the same guy who played “Bubba” from “Forrest Gump.”)

Anyway, Lt. Dan had told Forrest that if he ever became a Shrimping Boat Captain, he would become his first mate.

So he shows up in Bayou La Batre, Louisiana to keep his word.  So a huge storm develops that would ultimately knock out all the boats except for the “Jenny.”  The wind, rain and thunder comes furiously and relentlessly but Lt. Dan stays up at the top of the boat, shouting:

“You’ll never sink this boat!

Come on!

You call this a storm?

It’s time for a SHOWDOWN!

(maniacal laughter)

You and me.

I’m right here.

Come and get me!

(More laughter)

You’ll never sink this boat!”

So like Forrest would say, “That’s all I’ve got to say about that.”

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 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!

Danish: Jeg soger en Donor til en Nyretransplantation

October 17, 2009

Mit navn er Michael.

Jeg soger en donor til en nyretransplantation, som jeg nodvendigvis skal have engang i 2010.

Jeg lider af en polycystic nyresygdom. Paa min hjemmeside www.mikeneedsakidney.com fremgaar det tydeligt, hvornaar jeg behover transplantationen.

Det er min mening at faa transplantationen i Washington eller Baltimore. En donors medicinalomkostninger vil blive fuldstaendig daekket af min forsikring.

Jeg arbejder stadig paa nedsat tid, men bliver hurtigt traet, og mine symptomer er blevet forvaerret. De sidste 5 aar har jeg undervist studerende. Mine elever her lider af autisme. Jeg har undervist de samme born i sport de sidste 10 aar. Se mere herom paa www.coachmike.net.

Det sidste aar har jeg vaeret paa en venteliste for at modtage en nyretransplantation. Normalt er ventetiden 5 aar. De bedste transplantationsresultater opnaas dog ved hjaelp af levende organer. Alternativet er dialyse, men det kan vaere fatalt.

En transplantation vil forhaabentlig fungere resten af mit liv. Chancen for succes er meget stor. Jeg ville blive saa god som ny, og skulle blot tage medicin. Det er min onske at blive gift en dag, faa born og senere borneborn.

Saa en nyretransplantation kan til syvende og sidst blive forskellen paa at do eller leve et langt, normalt og sundt liv.

En donor ville faa enkelte, mindre smerter i en uges tid, og ville saa ikke maerke mere til det.

Donorens blodtype skal vaere ’O’. Der er dog stadig en mulighed for at donore ved at tilfoje en anden blodtype.

Jeg ved, det er meget at bede om. Men for mig ville det vaere en fantastisk gave at modtage.

Tak.

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.

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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