Posts Tagged ‘kidney transplant’

Washington Hospital Center and Georgetown Hospital to merge kidney transplant programs

December 20, 2010

Washington Hospital Center and Georgetown University Hospital will combine kidney transplant programs in 2011, according to an inside source.  This would leave only two transplant centers in the Washington, D.C. region, WHC-Georgetown, and Inova Fairfax Hospital.*  The move is expected to result in less choice for kidney transplant recipients, and possibly a reduction in quality.

In the Baltimore area, two hospitals perform kidney transplants, Johns Hopkins Medical Center and the University of Maryland Medical Center.  The Washington, D.C. metropolitan area (5.4 million people) has twice as many residents as the Baltimore metropolitan area.

WHC is known for excellent surgeons, but the admistrative structure and customer service have been heavily criticized.  WHC has also used inconsistent criteria for keeping patients on the kidney waiting list and is significantly behind other transplant centers in supporting electronic means to search for kidney donors.  The staff at WHC has also been accused of being unresponsive.

One patient called WHC’s patient advocate office more than 25 times with no resolution other than being referred back to the transplant office that was originally complained about.

The move is part of a recent trend in hospital consolidations.  Johns Hopkins recently merged with Suburban Hospital in Bethesda and Sibley Hospital in Washington.

*The Clinical Center at the National Institutes of Health in Bethesda, Maryland and Walter Reed Army Medical Center in Washington perform a small number of kidney transplants.

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.

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.

 

Disappointed in NBC’s coverage of the Olympics today

February 28, 2010

After a great Olympics, and excellent Olympic coverage, I’m disappointed in NBC’s coverage of the Olympics today.  Chris Klug, the only athlete ever to compete in the Olympics after getting an organ transplant, finished seventh in the men’s parallel giant slalom snowboarding event.  This story, about a liver transplant recipient competing in the Olympics, was tailor-made for NBC to do a feature, but they didn’t do anything on it.  The commentators barely mentioned it, and talked more about a competitor who was a blueberry farmer and another one who sold sausages to raise money. When they did mention it, it wasn’t even in prime time.

On the one hand, it’s not a big deal in the sense that Klug, like many transplant recipients, is now living a normal life.  But it’s a story that is interesting and that probably would have been told had it been any number of different illnesses.

I think that our American me-first culture, along with a lack of interest in education, or call it a lack of intellectual curiosity, and a low attention span are contributing factors to why we don’t hear more about stories like this. About 15 people die every day waiting for an organ transplant, and two-thirds of those are waiting for kidneys. Everybody has two but only needs one, and donors can be out of the hospital within a couple of days.  Risks are minimal for healthy donors.  But only about 6,000 Americans donate each year even though 84,000 people need kidneys in the U.S.

We have about 300 million people in America.  So you figure, take away those under 18 and over 60, and then take away those not healthy enough to donate, and there are still about 200 million people left eligible to donate kidneys.  So with 6,000 people donating each year, only about one out of every 33,333 eligible people donate.

Now take a look at health care reform.  A majority of Americans are against it.  Part of it is that they don’t understand it, but I think a lot of it is just that a majority of people – let’s say about two-thirds – do have good health care, so why should they care about those who either don’t have health care or have less than adequate health care? Some people get dropped from coverage for pre-existing conditions, but again, most people — well more than half — don’t have pre-existing conditions, so it’s no problem for them.

So, we’re just generally selfish, but we make fun of countries that invest in health care and education.

www.mikeneedsakidney.com.

As an aside, with snowboarding’s popularity, it was strange to put so little of this event on prime time.  When most people snowboard, they do it down a hill, not in a halfpipe.

Health Insurance Fiasco, Part Two

December 23, 2009

Below is an example of why having a health insurance plan such as the one federal employees and members of Congress have would simplify things for patients and make coverage more fair, rather than allowing people to have the quality of their health insurance based on what type of job they have or who their employer is.

A couple of months ago I called CareFirst Blue Cross/Blue Shield’s Maryland Health Insurance Plan to ask what they covered for kidney transplants.  I had previously talked to the Financial Coordinator at a hospital who said that MHIP/BCBS does cover transplants – that you don’t have to get Medicare.

First, the person on the line at MHIP/BCBS strongly emphasized that a kidney transplant would have to be pre-approved in order to be covered.  I guess there are a lot of people who get kidney transplants who don’t need them. Maybe she thought I was trying to get the benefits of a kidney transplant when it wasn’t really necessary.  She was also kind of mean, which seemed strange.  Customer service reps are supposed to be nice, or at least neutral.

Anyway, I found out that MHIP/BCBS covers 80% of the allowed charges for in-network surgeons and 60% for out of network if you haven’t fulfilled the $1000 out of pocket maximum.  That’s different than the deductible.  If you have satisfied the out of pocket maximum, it would be covered at 100% of the allowable costs for in network doctors (I still don’t trust this).  They couldn’t tell me how much was allowable, though.  I asked a hypothetical question – what if I had fulfilled part of the out of pocket maximum – say $700 – then would they apply the first $300 of the costs of the transplant to the out of pocket maximum and then cover the rest?  She refused to answer that and just said that in order for it to be covered I had to have fulfilled the out of pocket maximum.  She said if I hadn’t fulfilled the out of pocket maximum, the benefits would be covered at 80% of the allowable charges.  I again asked what if I had fulfilled most of the out of pocket maximum – would the difference be taken out of the first few hundred dollars of the transplant costs, so that the rest of it would be covered?  For example, if the transplant costs $100,000 (it costs a lot more, but let’s say $100,000 for simplicity), and I had fulfilled $900 of the $1000 out of pocket maximum, would they apply the first $100 out of the transplant cost to the out of pocket maximum, so that the $99,900 remaining cost would be covered?  She and a second person refused to answer, though they implied that it would only be covered at 80% of the allowable charges if I hadn’t fulfilled the out of pocket maximum.  However, a third person did tell me that yes, the difference would be applied to the out of pocket maximum.  I had asked to speak to a supervisor, but I’ve probably asked about 15 times in the last year and a half and only once gotten to speak to a supervisor.

If you really think about it, an out of pocket maximum is just that – the amount that one has to pay out of pocket and no more – but I wanted to make sure.  I’ve had a lot of problems with this insurance company in the past.  (Just a couple of weeks ago I called to see if they received my medical claim.  The representative said it would be 30-45 days from the time I mailed it to the time that they could tell me whether or not they received it – not whether or not they accepted it or when I’d get the money.  So if they didn’t receive it, I could only find out that they hadn’t received it four to six weeks after I sent it).

I’m not even going to bring up the prescription medications.  This is confusing enough.

Then I found out that all the information above about what is covered for the transplant was irrelevant, because MHIP/BCBS requires you to use Medicare for transplants if you’re eligible.  MHIP/BCBS never told me this.

I called Medicare and got through after several failed attempts.  When I did get through, the person didn’t know if transplant recipients had to get Medicare.

Then I called another hospital’s Financial Coordinator and asked how much better would it be if I had a job with federal insurance.  She said she didn’t know because there are so many different federal plans.  But as far as I know – there are only two federal plans – Standard and Basic.  Each one covers virtually 100% of everything with just copays, and the process is transparent to the patient, without a lot of confusion and applying to different plans.  But she said she wasn’t familiar with them.  That was hard to believe because these hospitals do hundreds of transplants a year and I’m sure some of the patients are federal employees.

Then I called the social worker at the same hospital.  She said that the Financial Coordinator at the previous hospital was wrong that MHIP/BCBS covers kidney transplants, because MHIP/BCBS requires patients who are eligible for Medicare to take Medicare.  Medicare is automatically offered to anyone who gets a kidney transplant.

Medicare Parts A, B, and D seem to cover 80% of everything while a Medigap policy would cover most of the remaining costs.  I estimate that the total costs would be about $600 a month, about four times as much as the costs that it would be under federal insurance.  But it’s not the money that is the biggest issue – it’s more applying for different plans and dealing with people on the phone that could be stressful either right before or right after a transplant.

Medicare only lasts three years for transplant patients.  After that they consider that you are fine even though you need to take immuno-suppressant drugs for the rest of your life.

Luckily, I live in Maryland, which through MHIP/BCBS offers health insurance to people with pre-existing conditions.  But not all states have programs like this.

I believe the reasons that many people aren’t for the health care reform bill in Congress include the fact that even though tens of millions of people don’t have health care, a majority of people do have health care.  Also, while many people are discriminated against on the basis of pre-existing conditions, most people do not have pre-existing conditions.  Should people who have insurance care about those who don’t?  Should people without pre-exising conditions care about those who have them?  I believe so, but not everybody does.   In addition, the insurance companies are big businesses, so the people who work for them and invest in them want to see them continue to make big profits.  Finally, people don’t like change – they would almost rather be in a worse situation than a better one because their fear of change is so great.

In retrospect, maybe Obama and other Democrats should have had a more clear message, and listed about three major points, and used those points over and over in speeches, because the American people like slogans and soundbytes.  For example, they should have emphasized the following simple points (we need simple – let’s be honest, our attention spans aren’t that long):

1.  Many people don’t have health care.

2.  Insurance companies discriminate on the basis of health.

3.  If the money from the profits the insurance companies make were instead used for medical care and research, people would be healthier.

They should have also used real world examples of people affected.

DirtBags to Perform Song for Kidney Donor Awareness at FedEx Field before Skins-Saints Game

December 2, 2009

FOR IMMEDIATE RELEASE

CONTACT: Thomas Warren

President, RAC

www.OntheRAC.com

www.mikeneedsakidney.com

Redskins’ Fan Club Bands Together to Raise Awareness for Organ Donations

Landover, MD – The DirtBags, the house rock’n'roll band of the Redskins’ Appreciation Club (RAC), will debut their new single Draft a New Art Monk (Get a Kidney Too) (see http://www.youtube.com/watch?v=7Xls6-uBZSA) at a live concert in the FedEx Field parking lot at 11am Sunday December 6th to raise awareness for organ donations.

The #1 Redskins fan club in the Washington/Metro area, the RAC was enlisted by “Coach” Mike Frandsen to record the song to help him find a kidney donor.  Frandsen has polycystic kidney disease and will be in need of a kidney transplant in 2010.

“The world needs to know that Redskins’ fans stand by their team, and their team’s fans,” said Thomas Warren, RAC President. “There is too much negativity these days.  But we’re not down.  We’re united in two things:  Rooting for the ‘Skins and helping Mike get a kidney.  That’s all we care about.”

The concert will feature The DirtBags, with “Coach Mike” on the drums.  The DirtBags play a fun blend of country/rock’n'roll and feature classics such as Art Monk for the Hall of Fame, Rocky Ain’t Real, and the RAC Fight SongArt Monk for the Hall of Fame is currently ranked sixth on YouTube for Art Monk with over 3,100 hits.

“Coach Mike provides one-on-one support to children with autism.  His is dedicated towards helping others,” said Warren.  “Mike is in need of help.  Please see www.Mikeneedsakidney.com to see how you can help.  He does so much for others.  This is the least we can do.”

Coach Mike wants to remind everyone that there are 80,000 people in the U.S. waiting for a kidney transplant and many of them are worse off than him.  He recommends that people who are interested in donating a kidney to someone visit www.matchingdonors.com or www.kidneyregistry.org.

The concert will be held at A61 in honor of Casey Rabach, the team’s center.  A61 is located in the A section of the Green Parking lot.

For more information: www.mikeneedsakidney.com or www.OntheRAC.com or

Contact: Thomas Warren

Phone: 703-984-9015

###

Draft a New Art Monk (Get a Kidney Too)

December 2, 2009

Draft a New Art Monk (Get a Kidney Too)

Lyrics by Mike Frandsen and Thomas Warren.  Music by Thomas Warren.

Performed by the DirtBags (http://www.ontherac.com).  See the YouTube video at http://www.youtube.com/watch?v=7Xls6-uBZSA

They finally put Ark Monk in the Hall of Fame

After all my years of complaining

Now there’s just a couple things to do,

Draft a new Art Monk and get a kidney too

Draft a new Art Monk and get a kidney too

Coach Mike teaches kids who are autistic

But he’s got a disease called polycystic

He wants to still work but he’s feeling sick,

It’s hard cause his kidneys just don’t click

It’s hard cause his kidneys just don’t click

He hates to ask but will you grant

His wish for a brand new kidney transplant

It doesn’t take a lot of analysis

To see it’s best to avoid dialysis

Mike’s been a Skins fan since the days of Allen

But kidney disease is a much bigger challenge

And now his kidneys are taking a tumble

But like Art Monk he stays humble

But like Art Monk he stays humble

He hates to ask but will you grant

His wish for a brand new kidney transplant

It doesn’t take a lot of analysis

To see it’s best to avoid dialysis

Coach Mike teaches kids to be their best

But now Coach Mike’s in a really big mess

He was hoping that the numbers were wrong

But even he can see his kidneys are gone

Even he can see his kidneys are gone

Spoken:

There are 80,000 people in the United States alone waiting on a kidney transplant

Become an organ donor

Mikeneedsakidney.com



We hate to ask but will you grant

Our wish for a brand new kidney transplant

It doesn’t take a lot of analysis

To see it’s best to avoid dialysis

Mikeneedsakidney.com

On Loyalty

December 2, 2009

What is loyalty?  The DirtBags, the Redskins Appreciation Club band (www.ontherac.com) performed a song for me (http://www.youtube.com/watch?v=7Xls6-uBZSA) to help me find a kidney donor and raise awareness for organ donation.

“The world needs to know that Redskins’ fans stand by their team, and their team’s fans,” said Thomas Warren, RAC President in the RAC’s press release.

That’s all you need to know.  Skins fans stick together.  It’s like a fraternity.  Two years ago, I wrote 10,000 words in support of Art Monk, the greatest receiver currently in the Hall of Fame, to get into the Hall (http://www.coachmike.net/artmonk.php).  My article didn’t even scratch the surface of what other fans did over an eight-year period.  The DirtBags did this now classic song: http://www.youtube.com/watch?v=CNCSHC1fsoo.

But the point is, what goes around comes around.

The Dirtbags will be performing the song in the parking lot of Fed Ex Field December 6 before the Redskins-Saints game.  They’re even letting me sit in on drums.  It should be a lot of fun.  See the press release for more information.

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!


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