Rodney Roe's Blog

Still Trying to Make Sense of It All

Rodney Roe

Rodney Roe
Clayton, Georgia, USA
November 22
I currently place myself among the curmudgeons of the world. Always thinking about why things are, and how they may be better, I tend to rant at times, but mostly I just look for a reasoned discourse. I have previously worked as a cotton scout, grocery bag boy, cannery worker, and am a physician. I am married, have two daughters and four granddaughters. I retired due to vision loss in 2005 after a 30 year career as a hospital pathologist. Fortunate to have a wide range of interests, life following retirement has been good.

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APRIL 3, 2012 3:50PM

Obamacare and my Granddaughter's Kidney

Rate: 29 Flag

My Obamacare story does not involve me, directly.  It involves my granddaughter.  My daughter could tell this story so much better, but I will give it a try.  To protect our family's privacty our granddaughter's real name is not used.  I've decided to call her Daisy.

 Nearly 10 years ago our older daughter discovered that she was pregnant.  She was excited.  It would be her first child by her husband, and her older daughter would have a baby brother or sister, something she had always wanted.

Very careful about everything, the pregnancy was attended by a mid-wife and my daughter gave up caffeine, alcohol, ate “right” (she is a vegetarian) and waited for the big event.The delivery went without a hitch and we had a new granddaughter.  Daisy didn’t gain weight in the first few weeks and the mid-wife urged our daughter and son-in-law to see a Pediatrician.  She was examined, a careful history was taken, blood tests were drawn and everyone went home.

We got an hysterical phone call from our daughter.  Something about, “her kidneys aren’t working.”  Following a great deal of work-up it was determined that Daisy had hypoplastic/dysplastic kidneys.  The kidneys were not only small, the plumbing inside wasn’t hooked up right.The immediate post diagnosis period was one of shock, disbelief, and all of the stages of grief outlined by Elisabeth Kübler-Ross: Denial, Anger, Bargaining, Depression and Acceptance.  At times there is still anger and I don’t think depression has ever completely gone away.Genetic counselors advised them that they had done nothing wrong.  This was just a fluke. Perhaps, the baby had been exposed to a virus during a critical period in gestation.

For several months Daisy was maintained on a strict diet, had a gastric tube placed to feed her because the diet was not very palatable and people with renal failure don’t taste things normally.

At about 8 months Daisy was in the hospital and caught parainfluenza virus.  She ended up in I.C.U. on an airway, sedated and paralyzed for 3 weeks.  When she recovered what little kidney function she had had was gone.  She then went on peritoneal dialysis.  A tube went into her abdominal cavity and every night fluids washed into and out of her abdomen taking the toxins away.  The machine that did this was suitcase sized and the fluids came in large cartons that filled the bedroom. Going anywhere overnight was nearly impossible.  Our daughter became, essentially, a full time nurse.

Our daughter and her husband were massage therapists in a suburb of Seattle, Washington.  That is they were until Boeing moved its headquarters to Chicago, and much of its production facilities offshore.  The plant in their little town suddenly had thousands of unemployed machinists and food and shelter became more important than a massage to most clients.

So, our daughter and her husband went on public assistance when the baby came and her care was provided by Medicaid since they had no private insurance.

No one asked our son-in-law whether he had a daughter with a pre-existing condition when he applied for a job because he was looking for construction work and the rest of the people in the application line were unemployed machinists. The family left Washington and moved to Arizona in search of work. 

A little work was found but not enough to pay the bills at first.  At age three (she was actually in pediatric intensive care when she had her third birthday) Daisy received a kidney transplant from a 22 year old auto accident victim who had had the generosity and forethought to make herself an organ donor.  The post-operative period was stormy.  Not due to the surgery, but because a full out assault on our granddaughter’s immune system had to be launched in order to prevent her from rejecting the kidney.

Immunosuppression is a walk on a tightrope.  Too much suppression and a person falls victim to an overwhelming infection.  Not enough and the organ is rejected.

Our little granddaughter was in the hospital for seven weeks.  The transplantation was a success, immediate immunosuppression worked, and she was placed on long term (lifetime) immunosuppression.

Our son-in-law found a job working at a copper mine in Arizona.  The job came with health insurance.  And then the economy collapsed. The chief use of copper is to make electric wires and most of that was going into new home construction. He was let go, the mine closed, and it was back to Medicaid.  The bind then became one of staying impoverished so that the Medicaid funding was not stopped.  If that happened Daisy would be uninsurable because she would have a period without insurance at the same time that the family could not make enough money to afford private health insurance.  The economy, being what it is, did not afford jobs that provided full coverage health insurance.

Then along came Arizona's conservative legislature and Governor Jan Brewer who launched a full out war on Medicaid recipients.  Patients waiting for organ transplants were basically told to go home and die.  The situation became so threatening that the family moved to Oregon, a state that grants Medicaid insurance to the needy and a graduated program for working from Medicaid to full private insurance as incomes increase.

This had barely been accomplished when Daisy had a full blown attempt to reject her kidney.  More hospitalization followed with intensive i.v. treatment of drugs and blood products and she is now home.  She is home, but still in danger of losing the kidney through chronic rejection.

Ironically, if Daisy went back onto dialysis she would be covered by Medicare due to a loop hole inserted during the initial institution of Medicare.  Her life, however, would be much diminished.  Because transplantation was not an option at the time that Medicare came into being it is not included in Medicare coverage.  This is unfortunate because, while it costs about $80,000 a year for dialysis, the cost of immunosuppression is only about $20,000.

There is still a 10% unemployment rate in Oregon.  Job applications warn not to apply if you don’t currently have a job.

The Affordable Health Care Act would have helped.  Our granddaughter could not be refused insurance due to a pre-existing condition. There are other provisions in the bill that would also have been helpful. 

Through all of this our daughter went back to school and has maintained a 4.00 average.  She should graduate at the end of the year.  Then it is on to graduate school provided that she is accepted.

The granddaughter will be 9 next month. Anger and depression have once again set in.  It is like the whole family is drowning and there is no way to the surface to get a breath.

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Oh my goodness, what a long and difficult road for all of you. Sending many, many prayers and best wishes for health and for financial stability to your granddaughter and her whole family. I hope somehow things will turn for the better very soon.

(Oregon's model of being able to transition from Medicaid to insurance with no lapse in coverage sounds like a good idea...)
Rodney, I am so terribly sorry to hear about this. I don't know what else to say except I wish you strength and send warm thoughts your way.
It is hard to read this and believe that we live in a developed country. I hope things look better soon.
For "Daisy's" and your family's sake I hope things work out but... However the legislation is written, without significant and expedient punitive fines, the health insurance industry will continue to play the game of dragging out claims with the full knowledge that those who die without expensive treatment are financially "good" for their bottom line. I've got no idea how the current legislation deals with the denial of claims, but without adequate and expedited recourse, they'll continue to cherry pick customers.
In the midst of your own anger and depression you've written a clear accounting from a personal point of view.There are so many stories like this.
I hope it turns out better eventually.
For any of you who read this when it was one long ungroken paragraph, I apologize. For some reason paragraph breaks aren't holding when I post from Word 2007 to OS. I have to preview and then go back and edit. I hit Publish just as a tremendous thunderstorm hit, shut down the computer and went to check the weather.
It should be much easier to read now.
jlsathri, the U.S. and South Africa are the only two developed countries which do not have universal health care. (The U.S. and New Zealand are the only two that allow direct to consumer advertizing.)
clay ball and Erica K. thanks for the good wishes.
jMac 1949, there is a lot wrong with Obamacare. What we need is a universal, single payer system with real bargaining power to all of the players; physicians, hospitals, PHARMA, durable medical suppliers and anyone else who supplies or aids in medical care.

France, which the WHO ranked best in the world (but who we can't emulate because they wouldn't join Bush, Rumsfeld, and Cheney in pursuing the invasion of a soverign nation on trumped up charges) would be a great place to start, or Denmark, or even Germany, but those are all socialist countries...
p.s. Rodney, I agree, "What we need is a universal, single payer system with real bargaining power to all of the players; physicians, hospitals, PHARMA, durable medical suppliers and anyone else who supplies or aids in medical care." And, yes, there are many other countries we can look to for ideas of what works. The transition will be a lot of work and planning, but what we are doing now is disastrous for far too many people.
I am beyond sorry. It is so hard to go through this, and having to worry about bills and insurance coverage makes it more stressful than it already is.
Mimetalker, I left all of that out. Not only did our daughter have to learn about electrolyte balance, antirejection drugs, their mechanism, when and how to administer them, and how to change hydrating solutions, she had to become an expert on insurance, healthcare law in each state, and which agencies could help. She has had to drive 2 hours each way, monthly for blood tests, meet with doctors, nurses and social workers, and at the same time try to keep her life, her husband's life, and the baby's life as normal as possible.
You have put a very human face on this issue. I am so sorry for your family. Here in Oregon, there have been some cut backs in medicaid, but our governor, a former emergency room doctor, has worked hard to make sure the children are given what they need. I feel we are among a few humane states in this country...and that is a shame. We need to catch up with the rest of the industrialized world and take care of those least able to take care of themselves--sounds kinda Christian, doesn't it--but I'm not a Christian and neither, I suspect, are many of those who claim that label since their actions do not reflect the words they bandy about.
I found myself wavering between anger and remorse as I read your story. The Affordable Care Act gives us something to build on. I have my fingers crossed. Something's gotta give.
I don't know what to say, other than thank you for sharing your story. My very best to your entire family. You all sound remarkable.
Geez, what an ordeal Rodney. So what happens if the Supremes strike down Obamacare?
I am speechless. This post hit me hard to know that you and your whole family are in so much pain. I wish you much more than luck./r
Thanks for sharing your story, Rodney. In addition to putting a human face on the issue, I think you really highlighted some of the inconsistencies and inefficiencies of our current health care system. I wish your granddaughter, and the rest of your family, the very best.
Heart wrenching story Rodney. As one who cares about other people and believes in being my brother's keeper I can't understand how any decent human being doesn't want health care for all. I can't understand how it's morally right to let others suffer and die.

"It's the greatest poverty to decide that a child must die so that you may live as you wish." - Mother Teresa
l'heure bleu, I have never seen that quote. I can't think of anything more apt.
So painful as to be hard for me to read. My heart goes out to all involved. This really puts a human face on the health care mess in America. It also shows how much exhaustive effort, hard work, and stress such a crisis demands of the family even with good health insurance and medical care. [r]
Hope things ease up for your daughter and her family. This is just heart-breaking.
What everyone else has said. Prayers and blessings from this atheist.
Perhaps one of the most offensive things I have run into is exhibited in the name of Arizona's Medicaid system. When you go to their website this is what greets you: "Welcome to Arizona Health Care Cost Containment System (AHCCCS)"
Think about it. This is not about providing care for indigent people. It is about saving the state money.
When I lived in Arizona in the 1970s they didn't have Medicaid because it was a Federal system being forced on the states. This is what they came up with.
What a heartbreaking story! And then add to it the illogical whims of our country's health un-care system ... why doesn't the U.S. care about its people in need?

I'm curious what field of student your daughter entered--I guessed medicine or politics.

I feel so sorry about all this pain.
"field of study" is what I meant to say above, of course
Bless her and you.

I got my sister's kidney 13 yrs ago.

I was able to give up the immunosuppressives 6 yrs ago.


ManhattanWhiteGirl, Speech Pathology or whatever it is now called. She should have been a physician. She is brilliant and would have been excellent. She just wasn't ready for that 20 years ago.

Jonathon Wolfman, That is wonderful. You must have been a match or very close match to your sister.
Thanks for bringing the point home in such an eloquent and personal way. Good luck to "daisy"
I wish your granddaughter good health and I know that this is not an isolated story. We desperately need reform in this country. We wrestle with the giant corporate greed, until one of us is slain, I pray it is them.
Dad, I love you. This makes me tear up from skull to belly.

I don't know that I'd consider myself "brilliant". But I've been smart enough to lose everything superfluous to retain what matters. I think l'Heure Bleue was absolutely spot on with the Mother Theresa quote: "It [IS] the greatest poverty to decide that a child must die so that you may live as you wish." Bearing that in mind, we are wealthy beyond our dreams.
Rowan, you're smarter than I am, ergo you must be brilliant ;)
this just sucks! The US health system is a joke. Millions spent on ED drugs while parents fight to keep their kids well. When I looked into Blue Cross single payer for myself, Ne england states were $1200 A MONTH, 178 A MONTH FOR FLORIDA, AND 98 FOR NEBRASKA. What's up with that?
Poppi, I was hoping that you would comment. I can't explain rates for coverage. The private insurance companies will tell you that they are based on their claims experience and your perceived risk to them.
The last figures for cost of healthcare by the WHO placed the U.S. at the top at over $4000.00/person/year, while ranking 37th in the world in outcomes.
There is no coherent system except the one the insurance agencies have to maintain profits.
Rodney, such a harrowing tale. It is tales such as this that makes Universal Health Care more important than ever.

Harrowing indeed. Best wishes to you and your family. R