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Author Topic: The Kidney and Goliath  (Read 5899 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: February 28, 2011, 11:47:46 AM »

Elissa Stein
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Posted: February 28, 2011 11:40 AM

The Kidney and Goliath

My brother called yesterday -- he was in the middle of a bad dialysis session. There were issues with his chest catheter, things like too much bleeding after days of discomfort, the usual five minute hookup took 45 instead. He knew it was going to be a long night.

A chest catheter is only a temporary measure -- his dialysis port failed last fall in spite of four operations trying to save it.

A kidney transplant could make all the difference. And I'm a match. Not only that, I've now gone through months of testing and re-testing. I've given 21 vials of blood, had two 24 hour urine tests, five urine analyses, a psychological evaluation and two cat scans of my abdomen, so surgeons could map out the best evacuation route. I'm healthy and have been cleared as his donor.

But, we have no surgery date. His insurance company seems to have recently decided that they won't cover a transplant at the hospital he's been going to. Even though they cover his doctor, have paid for various procedures he's had done there, along with all my compatibility testing, the transplant is now a no-go.

The surgeon has been asked to submit a formal appeal letter, pleading his case to do the surgery there instead of us starting over at a new hospital.

I have plenty of reasons he should include in his missive: how about that he's been treating my brother for over two years and my brother trusts him implicitly. Or the fact that with dialysis, mimicked kidney function raises him just above renal failure. That with no viable port, a chest catheter runs a far greater risk of infection, of which he's already had several. Then there's the fact that a donor is ready and waiting, that I've been through exhaustive, not to mention expensive testing and I've put my life on hold to be able to do this. And that should we need to start the process at another facility, there's no telling how soon my brother can get the organ he so desperately needs.

And here's one that doesn't seem to count anymore -- isn't this what insurance is for? For health care when you need it?

Someone, somewhere will be making decisions that while for them are mere paperwork, for us are life changing. Perhaps even life and death. This feels like a David and Goliath stand-off. Only his surgeon's appeal letter isn't a rock in a slingshot. It feels more like a used spitball that will languish in someone's inbox as my brother and I wait, without a say in what will happen next.

There are insurance stories far more heartbreaking than ours. People denied care or coverage. People who can't pay co-pays. People who live in pain or with illnesses that can be treated because they can't afford premiums. But, in this story it's my brother who's suffering. Whose life is compromised. Who's now grappling with case managers and coverage issues instead of planning for his transplant.

There's something wrong with a system in which corporations makes health decisions for people based on numbers, contracts or fees. Where patients are voiceless in their treatment. Where years of premiums don't guarantee you'll get the care you need. Where my brother will have to continue on dialysis in spite of the availability of a better option.

Health care reform is a necessity, not a conversation. And I'm hoping people continue to act on behalf of the millions who need, and deserve, to be treated better than this.

 
Follow Elissa Stein on Twitter: www.twitter.com/@elissastein

http://www.huffingtonpost.com/elissa-stein/the-kidney-and-goliath_b_826511.html
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #1 on: February 28, 2011, 01:20:10 PM »

This exact thing happened to my cousin.  Had a donor, all ready to go, then the ins co went into A$$ Mode.  My cousin had to endure an extra year of dialysis during which he survived an infection and a heart attack (costing his ins co extra money, by the way...this is the very definition of "shortsightedness") until he could change insurance companies.  Good ending, though..he got his transplant with a beautiful kidney (his donor was the husband of an old school friend...he and my cousin had never even met!).

This is truly an inhumane and unChristian situation.  I throw that in because in a country that shouts to the world that we are Christian and exceptional, we allow money to blind us from our Christian duty to help those in need.  Sometimes I think the US is the definition of "hypocrite", at least those in favour of retaining the status quo.

This kind of thing just makes me so mad.  If I've offended anyone, I am sorry.  Well, no, I don't think I am, actually.  Just telling it like it is.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
paul.karen
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« Reply #2 on: February 28, 2011, 01:33:37 PM »

MM

This has to do with large corporations nothing to do with Christianity?

And large corporations will be making ALL MEDICAL decisions under obamacare.  it will be suits and ties deciding who gets a cat scan and who doesn't.  Sadly it will be out of our own doctors hands.  Much like the bundling of dialysis. 

When your hemoglobin gets down to 10.4 and they wont give you epo to boost your red blood cell count or iron to raise your hemoglobin until you reach 10 or lower this is craziness.  It might be ok for people who dont work.  But i was at 10.4 once i i couldn't keep my head of my desk.  Had no energy yet still had to work to survive.
Sorry i got off topic a bit but wanted to make a point.

Now i dint agree with panels deciding anything for anyone for the fact we are all different.

But why you brought Christianity up is beyond me.  This is bureaucracy which is going to get worse with time.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
cariad
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« Reply #3 on: February 28, 2011, 01:55:59 PM »

MM

This has to do with large corporations nothing to do with Christianity?

And large corporations will be making ALL MEDICAL decisions under obamacare.  it will be suits and ties deciding who gets a cat scan and who doesn't.  Sadly it will be out of our own doctors hands.  Much like the bundling of dialysis. 

When your hemoglobin gets down to 10.4 and they wont give you epo to boost your red blood cell count or iron to raise your hemoglobin until you reach 10 or lower this is craziness.  It might be ok for people who dont work.  But i was at 10.4 once i i couldn't keep my head of my desk.  Had no energy yet still had to work to survive.
Sorry i got off topic a bit but wanted to make a point.

Now i dint agree with panels deciding anything for anyone for the fact we are all different.

But why you brought Christianity up is beyond me.  This is bureaucracy which is going to get worse with time.

Once I again, I must ask - did you read the article?! The suits and ties deciding who gets a cat scan, or rather, a transplant is what this article is describing, under our current system that Obama is trying to reform.

Paul, I supposedly have had great insurance all my life. Pre-transplant I had to argue with them relentlessly for things like an orthotic device to correct malformations in my baby's skull and of course the ever popular we're not paying for Aranesp even though it works for you and is what your doctor prescribed, you should be happy with ProCrit. I have written appeal after appeal, and was charged some $5000 for appointments that I went to after my husband phoned our insurance, United Healthcare (which sucks and blows) and two different reps told us not to worry about it, and assured us that we were covered there. Then they started leading off with recorded messages saying that they are not responsible for what their reps say.  How the hell are you supposed to ensure that you are covered anywhere, or will get anything out of the policy if they do not stand behind their reps? What other company can you name that gets away with changing and reneging on contracts? I can think of only one, credit cards.

Then Obama got into office and I have to say those insurance companies have been brought to heel, as have credit cards to a certain extent. Credit cards now have to at least make it blazingly obvious when they are going to change something or pull some other trick. Insurance reps no longer have that arrogant and disinterested attitude, they know that we have someone looking out for us in the highest office in the land.

I agree with Ms. MooseMom. I don't have any comment on Christianity as I am an atheist, but I do not need a religion to tell me that these insurance companies, these suits and ties, are dishonest and unethical and need to be controlled. In fact, I've even had reps from the insurance companies tell me that they hate dealing with insurance, too. Wonder how long those reps lasted, since their employer records everything, rather like the secret police in East Germany back in the day....
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paul.karen
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« Reply #4 on: February 28, 2011, 02:39:02 PM »

Yes cariad i read the article.  ANd if you read my response you would see that you agree with me less the christianity angle.

Large corporations are bad and greedy.
Obamacare has LARGE PANELS making medical deciisions.  I quess you just didnt know that part?
Large panels decide how much and when a person gets this or that.
Your last paragraph says almost exactly what my first paragraph says?  IE: suits and ties making decisions.

I agree with MM.  Just didnt understand the christianity angle.

As for CC and banks ect.  Obama did great.  I never had a fee for either my checking nor my CC.  Now they both have fees as of April 1st.
 :2thumbsup; thx Obama.

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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
MooseMom
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« Reply #5 on: February 28, 2011, 03:03:42 PM »

Paul.karen, I have insurance through my husband's company; we are on an HMO because since I have a pre-existing condition, I have no other choice.  I can't see any doctor or have any test done or have any treatment or take any pill unless and until a health insurance company underwriter who doesn't know me from Eve and probably couldn't pronounce my name even if he knew it gives his approval.  HMOs are a legacy of Nixon.  Obama has nothing to do with it.

Jesus Christ told us that we should "do unto others as you would have them do unto you."  We are supposed to help those in need.  We are to look after the poor and the hungry and the sick.  Where does preserving a company's profit margin come into this philosophy?  Why would an insurance company refuse to pay for a transplant for my cousin approved by his team of physicians, when he had a donor all lined up and ready to go?  If there was a compelling reason other than money, then why would a different company agree to pay?  I bring up Christianity because it strikes me as unChristian to make a profit off of someone else's incurable disease, but since this is the mindset that America is mired in, I can only hope that along with profit-making, we also will make ethical choices guided by the tenets of our Christian faith if you are Christian, or simple human compassion if you are not or if you do not follow any particular organized religion.

What kind of person would WILLINGLY choose to deny a person a transplant.  In not paying for it, that's what this ins co was doing to my cousin.  They had happily accepted his premium payment for years, but when it came time to pay for a transplant, they WILLINGLY CHOSE to deny him.

There has been a lot of speculation about President Obama's religious faith with a substantial portion of certain political groups certain that he is not a Christian.  This seems to mean that being Christian is important to people in this country.  Honest question that begs an honest answer...do you think that anyone who is either non-Christian or atheist could ever be elected as President?  Do you remember the primary debate where the Republican contenders were asked how many of them believed in evolution, and few of them raised their hands?  Do you remember the "faith summit"?  It just seems to me that a lot of Americans bluster about being "Christian", but when it comes down to their every day lives, they are happy to have people in this country go hungry or go homeless or go without insurance and God help you (if you are Christian!) if you are sick or mentally ill or disabled! 

It just seems that our policies are not following our so-called faith.  I haven't been to church in years, mainly because of this hypocrisy.  I do not consider myself to be a religious person, but you know, maybe I am more religious that I realize because whenever I hear about people making such monumental decisions that benefit a corporation more than it benefits a person who is desperately ill, as trite as it may be (and this really does surprise me about myself), I really do find myself wondering how these people would look into the face of God and be judged worthy.

If you are a Christian, everything you do should be done according to the teachings of Jesus Christ INCLUDING the acts of corporations.  It shouldn't be a case of "I'll treat you as I'd like to be treated myself as long as it doesn't cut into my profit margin."  I'd bet the person who denied payment for my cousin's transplant wouldn't have liked it if some other corporation did the same to him.

(PS...that was a very insightful question...what does Christianity have to do with this?  I hope I've given a reasonable answer.  I do get quite wordy! :rofl;)

« Last Edit: February 28, 2011, 03:08:43 PM by MooseMom » Logged

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« Reply #6 on: February 28, 2011, 03:38:05 PM »

This may be of interest to those who want to make sure they can escape the new Affordable Health Care Act:

RICARDO ALONSO-ZALDIVAR   02/26/11 09:12 AM   

Read More: Christian Health, Christian Health Exemption, Christian Health Insurance, Christian Health Pass, Christian Medical Plans, Health Care, Health News
WASHINGTON — The brain tumor came back. An ugly mass growing in plain view threatened Karen Niles' remaining eye. She needed more surgery.

This time, however, her medical plan wouldn't pay.

It sounds like one of those insurance "horror stories" that President Barack Obama hammered home during the fierce debate to pass his health care overhaul. Except Niles' plan ended up as the beneficiary of a rare exemption to the new law – a waiver highlighted in the plan's promotional materials.

The plan didn't come from an insurer, but from a religious "health care sharing ministry." Consumer advocates call them a gamble.

These plans successfully lobbied Democratic lawmakers to free their members from the requirement that everyone in the country have health insurance.

"Christians are exempt from insurance mandates," Niles' old plan, Medi-Share, says on its website. Sharing ministries are "the only organized health care concept to receive a special exemption from the taxes, penalties and regulations" that the law imposes on insurers, the site says.

Medi-Share members affirm a statement of Christian beliefs and pledge to follow a code that includes no tobacco or illegal drugs, no sex outside of marriage, and no abuse of alcohol or legal medications. Every month, they pay a fixed "share" to cover the medical expenses of members in need. The cost usually is less than private insurance, but it's not tax deductible. Members use a network of medical providers.

If that seems close to regular health insurance, it's not, says Michael McRaith, the top insurance regulator in Illinois. "We have seen individuals who buy into a sharing program believing they are paying for a promise, and in fact that is not what they are receiving," McRaith said.

"There is no promise or certainty this sharing program will pay for health care expenses," he said.

Florida-based Medi-Share says it's faithfully helped members pay medical bills for more than 17 years, based on a Bible verse: "Carry each other's burdens, and in this way you will fulfill the law of Christ."

"It accomplishes some of the same purposes of health insurance," said Medi-Share's president, Robert Baldwin. "There are also a lot of contrasts ... first and foremost, the biblical basis: Members pray for one another and are prone to encouraging one another."

Karen Niles' husband wouldn't recommend it to anybody. "They have done their damage on me and my wife," said Robert Niles, a leader and teacher in his small-town Oklahoma church. Medi-Share's Baldwin blames state regulators for the Niles' misfortune.

Robert Niles said he found out about Medi-Share from a brochure a relative picked up on a church retreat. He had changed jobs and needed insurance. "Everything they said sounded good, so I filled out an application," said Niles, now 67 and retired from a career in sales. They joined in 2003. Their monthly shares, or premiums, ranged from $450 to $500.

It's unclear how many people belong to sharing plans, maybe about 100,000. Medi-Share is one of three main ones, with about 40,000 individual members. Members tend to have modest incomes; many are self-employed.

Each plan has its own rules and track record. Although they have procedures for dealing with coverage disputes, they're largely unregulated by state insurance departments that oversee private carriers.

At first, the plans feared Obama's health care overhaul could put them out of business. Pressing toward a goal of coverage for all, Congress was considering a requirement that everyone in the U.S. carry health insurance. Medical bill sharing is not insurance.

The plans formed the Alliance of Health Care Sharing Ministries, hired lobbyists and approached the Senate Finance Committee and the Senate Health, Education, Labor and Pensions Committee, which were writing much of the legislation. Finance Committee spokeswoman Erin Shields said lawmakers granted the exemption out of respect for religious freedom.

"We wanted our members to at least be able to keep participating in the programs," said Medi-Share's Baldwin. "Down the road, I believe that it would increase membership, depending on what happens to insurance costs."

Illinois insurance regulator McRaith says Congress should attach more safeguards to the exemption, such as requiring sharing programs to have capital reserves deep enough to handle unusually expensive cases.

If Medi-Share is an insurance alternative, its guidelines carry an eye-catching disclaimer:

"The payment of your medical bills through Medi-Share or otherwise is not guaranteed in any fashion." Members remain solely responsible for payment.

Sobering language in these days of runaway costs, but several plan members said they had no major problems getting coverage to treat costly life-threatening conditions.

Meredith Crumb of Lafayette, Colo., reckons that Medi-Share paid hundreds of thousands of dollars to treat her leukemia, now in remission.

"I found it by word of mouth in the Christian community," said Crumb, 50. "I had top-notch care."

She worries what would have happened to her if she had to rely on government-regulated coverage. "I know with my medical conditions, if I lived in Canada or Europe, I'd be dead," she said.

David Dacy of Austin, Texas, said Medi-Share paid tens of thousands of dollars for his wife's cancer treatment and for surgery to correct their daughter's deviated septum. He was skeptical when he first heard about Medi-Share, but signed up partly out of frustration with private insurance.

Through the years, Dacy said his family had difficulty with the plan just once, over his daughter's care. But Medi-Share paid. "It wasn't really a battle, but more effort than I thought was necessary," said Dacy, 55, an actor and private investor.

Others have had problems. Nevada pastor Michael Rowden sued Medi-Share over its refusal to pay for treatment of a heart condition. He eventually reached a settlement. "I was actually embarrassed to be associated with them," he said.

Before Karen Niles became incapacitated, she was a homemaker and a church volunteer in Blackwell, Okla. Medi-Share initially paid for treatment of her brain tumor, but in 2008 told the couple it could no longer continue to do so. The reason given was that Oklahoma state regulators had ruled Medi-Share was an insurance company operating outside the law, and ordered it to stop operations.

"None of us wanted anything to happen to Karen Niles," said Medi-Share president Baldwin, adding, "if a state tells us we can't operate in a particular state, we can't operate." Medi-Share had already paid more than $450,000 for Niles' care.

The Nileses sued, alleging the real problem was that Medi-Share did not have the money to pay for Karen's treatment. Medi-Share denies the charge.

The Oklahoma insurance department said Medi-Share could still pay claims, notwithstanding its order. "There is nothing currently prohibiting Medi-Share from paying medical expenses at this time, other than their business decision not to pay them," the department said in a 2009 statement.

The Nileses and Medi-Share agreed to binding arbitration to settle the suit. Arbitrators ruled last year in favor of Medi-Share, in a 2-1 decision.

"We may agree to disagree on the moral question, but the legal question was decided in our favor," Baldwin said. Karen Niles was able to get emergency surgery by joining Oklahoma's high risk health insurance pool, coverage of last resort for the medically uninsurable. The premiums, however, were about three times higher than what the couple paid Medi-Share.

Karen has since turned 65 and joined Medicare, and is under hospice care.

"I'm not saying this wouldn't have happened if she had that surgery," said husband Robert. "I couldn't prove that. But I think by waiting so long, it really did some damage."

___

Online:

Medi-Share: http://mychristiancare.org/medi-share/

Government health insurance site: http://www.healthcare.gov/

Alliance of Health Care Sharing Ministries: http://healthcaresharing.org/

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cariad
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« Reply #7 on: February 28, 2011, 06:28:53 PM »

Yes cariad i read the article.  ANd if you read my response you would see that you agree with me less the christianity angle.

Large corporations are bad and greedy.
Obamacare has LARGE PANELS making medical deciisions.  I quess you just didnt know that part?
Large panels decide how much and when a person gets this or that.
Your last paragraph says almost exactly what my first paragraph says?  IE: suits and ties making decisions.

I agree with MM.  Just didnt understand the christianity angle.

As for CC and banks ect.  Obama did great.  I never had a fee for either my checking nor my CC.  Now they both have fees as of April 1st.
 :2thumbsup; thx Obama.

I would never say that ALL large corporations are bad. However, I would say that all insurance companies with which I have dealt are perfectly content to sit and watch a person die if it will save them a few of their precious dollars.

I know that the only changes I have seen in my medical coverage so far have been for the better (far fewer arguments since Obama took office). I think it helped that I also got onto Medicare - I thought no one would accept it, but it seems nearly everyone does. No large panels have been making medical decisions for me, unless you count the transplant committees, and they have never tried to deny me anything. What large panels have been making your medical decisions, just out of curiosity? I honestly do not know what you are talking about.

Sorry, but if you are paying fees to your bank or credit card, how is that Obama's fault and not your own? Gwyn and I both have no fee credit cards, and the minute Citibank tried to institute a monthly fee without a minimum balance, we dropped them on their bloated :sir ken; and switched to our local credit union, which is what everyone within sight of this message should do RIGHT NOW. Fire your big bank!

Credit cards - the only annual fees I pay are for AmEx, and that is the same amount it has been since I started with this card. My husband's AmEx has no fee with a membership to a certain organization. Our Visas are no-fee. If your credit is good (Gwyn is a foreigner, so he suffered from lack of credit history, but he has built it up by now) and they institute an annual fee, just call them and threaten to cancel. I've done this numerous times in my life and they will waive the fee. No one is forcing you to stay with a credit card or bank. I thought you were all about choice?

I like the choice that Obama's plan will give us. It will be the first time in my life we can reasonably discuss picking an insurance company other than the one that my husband's company picks for him. If the company one is the best choice, we'll just stay with that. I have no attachment to my current GP, but if I did, I could just keep seeing him. I have seen no evidence that large panels will decide anything for me medically. Could you please point me to the section of the bill that states that? (Not some far-right ranting blog that has broadly and disingenuously interpreted a paragraph for their readers.)

Perhaps we do agree, from what you've written I cannot tell.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #8 on: February 28, 2011, 07:15:43 PM »

Oh my, MM, that Medishare described in the article, that is the exact type of coverage Gwyn's former employer offered the employees, and it left an engineer's wife dying painfully of cancer and bankrupted her husband, and it also left everyone who was suddenly dropped with no recourse under HIPPA laws because for that you must be covered under group or individual insurance, not one of these private pay systems. I would not touch one of these 'medical ponzi schemes' for anything in the world.

Wow, I am sick of people who do not know what they are talking about saying "if I lived in Europe or Canada I'd be dead".  What a patently ludicrous statement.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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« Reply #9 on: February 28, 2011, 08:54:23 PM »

Agreed, cariad.  My point was that even a "Christian" plan can be crooked. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #10 on: March 01, 2011, 12:16:47 PM »

Update: I contacted the donor who wrote this story and she said the insurance has been worked out, so 3 weeks until the surgery!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #11 on: March 01, 2011, 02:22:40 PM »

Update: I contacted the donor who wrote this story and she said the insurance has been worked out, so 3 weeks until the surgery!

She is very fortunate on so many levels.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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« Reply #12 on: March 01, 2011, 04:32:15 PM »

 :thumbup; Here's Elissa's blog if you want to follow along on her kidney donation adventure http://kidneyadventures.blogspot.com/
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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