Posts Tagged ‘transplant’

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.

150 dollar reward for information leading to how I can get health insurance right away

November 8, 2010

I will offer a $150 reward to the first person who gives me information that I can use that will lead to immediate health insurance coverage for me.  See the blog just below this one for background information.  Remember Obamacare, the health care law that was passed this year that prohibited insurance companies from refusing coverage to people with pre-existing conditions?  It turns out that that provision is only good for children under age 19.  If you’re older than that, you can be discriminated against because of a pre-existing condition up until January 1, 2014.

In Maryland, the Maryland Health Insurance Plan is the one plan that will accept people with pre-existing conditions, but MHIP is the plan that dropped me because I missed a payment.  They didn’t even inform me that they dropped me — luckily I found out so I can try to do something about it.  I’ve already wasted all of today on it.  Of course I called them immediately and asked if I could pay over the phone but that made way too much sense.

Today I applied for CareFirst BlueCross BlueShield “BluePreferred HSA” and got rejected.  Then when I called einsurance.com, they said that rejection goes for all the plans they have.

So tomorrow, I plan to apply to several health insurance companies and post the results here.  I’ll expose them for the frauds that they are.  There’s a misconception that it is now illegal to refuse medical coverage for pre-existing conditions but that’s not true. It’s perfectly legal to reject people if they were born with kidney disease like I was.

So, I can’t rely on doctors, nurses or hospitals to understand what options are out there.  I can’t rely on anyone at the National Institutes of Health, where I worked for eight years.  I can’t rely on the national or local Department of Health and Human Services.  I don’t think I can count on my congressman.  So I’m asking the American public to brainstorm and try to figure out a way for me to not only get insurance, but get it right away so I don’t have to wait two months.

Because I’ll need a medical procedure to get activated on the national kidney waiting list, I’ll soon likely need to get surgery to prepare for dialysis, and if I want a donor, he or she cannot get tested unless I have insurance coverage, which will create an even greater need for dialysis and the surgery to prepare for it.  This is all not to mention regular medication and labwork that needs to be done in order to measure my kidney function.  Since I don’t have many people who read my blog, I’m going to put an ad on craigslist.

If you have any ideas, please contact me at mikefrandsen@hotmail.com.

Also see:  Health Insurance Fiasco Part 1 and Part 2.

Health insurance lapsed

November 8, 2010

“Monday’s Funday, Charlie Brown?”  ”Nightmare on My Street?”  It doesn’t really matter what I call this blog entry.

Last night I went to pick up a prescription for the drug that reduces phosphorous in the blood.  I found out that my health insurance had been terminated because of non-payment.  I never received any extra notices saying it was late, no warnings, and I wouldn’t have even known that my health insurance was cancelled if I hadn’t gone to the pharmacy.

I can almost hear the critics, the righteous ones, now saying, “You should have paid, and you should have known that might happen.  It says it right there in the agreement…” There is no way to automatically pay each month.  I happened to forget.  If you forget to pay your phone or cable bill, you get a call reminding you.  Not so for health insurance.

I very urgently need the insurance for meds, services such as labwork, and for my a potential donor to get tested – I will soon need a transplant or dialysis (www.mikeneedsakidney.com).

CareFirst BCBS/Maryland Health Insurance Plan says I will have to appeal and won’t find out for 60 days. I swear, I could have told them, “I’m going to die at 5 p.m. today, but you can save my life by allowing me to pay the monthly premium and I’ll live,” and they would have probably replied, “I understand, but we can’t do anything.  It’s policy.”  So I FedExed the letter and it cost $25.

I had to cancel an appointment today at Georgetown Hospital for a kidney transplant evaluation and it takes two and a half months to get an appointment.

I called 311 -that’s when you have something that supposedly isn’t an emergency, and predictably, they treat it like it’s not that important.

I was told to go to the Montgomery County Department of Health and Human Services office and apply for insurance but it takes two months to get it.

So I spent all day at the local HHS and found out that they only offer medical assistance, not health insurance, and that even that takes two months.  But not before going to the wrong building.  They told me to go to a certain address, and after two hours of waiting I was told it was only for kids and pregnant women.  But there were a bunch of men there too and I asked the guy where the sign was indicating that it was for just pregnant women and kids and he said he didn’t know.  So he directed me to the right place.

Then I applied for BCBS through einsurance.com and got rejected because of kidney disease.  Their earliest start date was 12/1 anyway.

Then I called the US Uninsured Helpline/”Coverage For All” (or at least some) at 800-234-1317 and they directed me to the Maryland Health Insurance Plan (the ones that dropped me and won’t reinstate me for at least two months).  They said the only other option is the new federal health care program, but you aren’t eligible for that if you’ve had health insurance the last six months.

One other thing about MHIP is that when you ask to speak to a supervisor, they always say that one will get back to you within 24-48 hours, but it’s a lie — it never happens.

Then I called Medicare.  They said I’m only eligible for Medicare if I’m on dialysis or have a transplant.  Then I called Social Security.  Same thing.

They referred me to healthcare.gov but it turns out that they only mention Medicare, plans like MHIP, and Medicaid, which I found out from Social Security is the same as “medical assistance” and is health insurance, which would work, but I can’t wait that long.

I called and emailed Congressman Van Hollen, who is great at stumping on MSNBC for the Democrats, but so-so at best when responding to important requests from constituents, from what I’ve experienced.

I have a procedure scheduled next week, will need an access for dialysis put in in the next month, and if the hospital finds that my insurance has lapsed, they won’t run the tests on the donor, which would make the need for the dialysis access surgery even greater.

Then I called the “Coverage for All/We’re just kidding about our title” line again and they gave me a bunch of numbers for insurance brokers.  The only problem is that they were financial companies.

The bottom line is, how can I get health insurance effective immediately so that 1) any potential donor can get tested, 2) I can get the tests I need to get back on the waiting list, and 3) I can get the surgery for the access for dialysis, plus many other reasons?  It seems like there’s literally no way for me to get health insurance now.  If anyone knows of a way, if you are the first person to send me information leading to me getting health insurance right away, I will pay you a $100 reward.  Seriously.  Email me at mikefrandsen@hotmail.com.  And also remember that when people scoff at the notion that people can’t get health insurance, and claim that that problem really doesn’t exist, here’s proof.

Reward just went up to $150.

Also see:  Health Insurance Fiasco Part 1 and Part 2.

Update:  I also called the Maryland Insurance Information to make a complaint and they told me to fax it in and they would investigate it within two months.

I also called MHIP and they said no, you’re not eligible to get reinstated within two months, it will take 12 months.

I also called the White House but got put on hold.

Then I called the National Institute of Diabetes and Digestive and Kidney Diseases and left a message.

I called the Maryland Kidney Disease program but they are only a supplement for people who already have insurance.

Then I called “The Best Affordable Maryland Health Insurance Choices and Ethical Advice from the National Association of Socially Responsible Organizations (NASRO) for Non Profits, Businesses and Individuals/National Association for Socially Responsible Organizations” but the mailbox was full.

I also emailed Francis Collins, the head of the National Institutes of Health, and asked if he would put me in touch with someone at HHS but there was no reply.

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.

Kidney Transplant

June 1, 2010

I’m starting to feel the affects of kidney disease.

I’m not that concerned that people are hopelessly uneducated about kidney disease, that they don’t know even the basics about transplants.

I’m not even that concerned that people won’t spend a day and a half in the hospital to donate a kidney that they don’t need to save someone’s life.

What does bother me is the aversion that people have to basic math.  I put a graph up on my website, www.mikeneedsakidney.com, that shows the progression of the disease, and yet nobody will look at it. I don’t know any more than can be figured out from the numbers. Any fourth grader should be able to interpret the graph.  Take a ruler or even imagine where the line will go, and when it will reach the number when I’ll need transplant or dialysis.  That number is listed on the site.

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.

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.


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