American Poverty: Health Insurance
Posted: April 4, 2012 Filed under: American Poverty | Tags: chronic illness, Erie County, health care debate, health care reform, health insurance, Monroe County, New York, poverty and health care, real life stories, Social Services 1 Comment »I haven’t prepared my 2011 taxes quite yet, so I’m not exactly sure where I fall on the poverty scale, but if 2011 looks anything like my previous returns, I will still be categorized as “working poor.” I make too much money to qualify for “benefits,” but not enough to afford the cost of living.
Health insurance is my biggest and most pressing challenge. When New York State does the math, they figure I can afford to pay health insurance premiums… and they’d be right if insurance premiums were the ONLY thing I had to pay. Don’t get me wrong — there are options available that would ensure my coverage: Healthy New York (one of many state-sponsored programs) or Direct Pay (non-subsidized). But for a single, self-employed artist with a chronically ill adult child, they’re simply not affordable.
HEALTHY NEW YORK (State-sponsored, but the only option available right now is the high deductible plan. For a family, that’s $2,400 out of pocket before coverage kicks in.)
DIRECT PAY WITH BLUE CROSS/BLUE SHIELD OF WESTERN NEW YORK
When Jake is uninsured – as he is right now – we’re in “family emergency” mode. That is, every day requires a certain amount of patient, sustained effort in the form of phone calls, paperwork, old meetings and new meetings, social workers, hospital crisis personnel… The worst of it is trying to deal with the county Social Services Department (because in NYS, the state health insurance program is managed by the same people who deal food stamps). Over the last nine months, I have telephoned Monroe and Erie County 50 to 100 times. Not once have I ever gotten through to someone who can resolve the very simple issue of an address change, even after sending a certified letter to the county with copies forwarded to my congressional and senatorial representative. Jake does qualify for Medicaid, but the address thing has been an ongoing issue. It’s not as simple as moving insurance two counties over from Monroe to Erie. I don’t know why.
Last night I was trying to explain to Channy, my Significant Canadian, how this all works. He cannot fathom the fact that either of us – me or Jake – should have to manage this issue as often and as stridently as we do. Sad that we are but two individuals out of 50+ million in the U.S. facing this and all of the side effects that result.
This is just OUR story, and only a part of our story, at that! We also know what it’s like to bite the bullet, pay the full premium and try to manage financially. That struggle didn’t cause the end of my second marriage, but it contributed to it. During the years when Jake was on dialysis, my entire annual income (about $13,000 from part-time freelance writing) went toward the cost of insurance premiums, co-pays and other medical expenses. At that time, medical wasn’t tax deductible.
$13,000 worth of taxed wages MINUS $9,000 in direct pay insurance premiums MINUS $4,000+ in prescription and physician visit co-pays MINUS mileage, hospital parking, hospital meals, and so on and so on… EQUALS one chronically stressed family.
Add this to the insanity: Our family had direct pay health insurance (at that time $750/month) to cover myself, my other son Cory, my husband and Jake. But we were also required to pay for a Medicare policy for Jake. In the U.S., if you’re eligible for Medicare, you MUST have it or face penalties. Because of Jake’s need for dialysis and for a year after the transplant, we carried an additional $99/month Medicare premium, even though we had private health insurance.
This is and has been our primary life burden over the entire course of Jake’s life. The problem itself doesn’t make me angry. Life’s not fair… so be it.
What makes me angry and cynical is constantly hitting red tape walls defined by inefficiency and overuse, feeling like a caged animal between warring parties who can’t get their shit together to ACCOMPLISH something that makes sense for the users, and constantly worrying about how to balance and prioritize crises that originate from this singular problem. I’m angry about narrow opinions, media dissections and resections, and big talking heads who distort facts to protect the status quo.
I do not wish to be categorized as a partisan advocate for or against health care reform. I just want something that makes sense.
Transplant Recipient: The Right to Take One’s Health for Granted
Posted: July 17, 2011 Filed under: Commentary, Growing Up, Living Organ Donation | Tags: balance, gratitude, kidney transplant, organ donation, post-transplant Leave a comment »During the years my son, Jake, was on peritoneal dialysis, our lives–every minute–revolved around keeping him out of the hospital. I’ve written about that, so I won’t reiterate the wearisome checklist of a typical day-in-the-life of a dialysis patient. Besides, my point is that we were heroically, but humbly diligent. There were times when–exhausted, sick or defeated–we wondered if a transplant would ever happen for Jake. The reality, though, is that most folks awaiting a kidney transplant wait longer than four years. As a child recipient, Jake’s placement on the waiting list was higher than that of the adults who’d been there longer, and were perhaps sicker than he. But Jake did get a kidney at age 13. Now a reasonably healthy 21-year-old, we credit both luck and compliance with the fact he’s suffered no rejections.
As a health-conscious person and, more significantly, Jake’s mother, I’m dismayed when he misses a dose of medicine or doesn’t eat properly or drinks too little water (and too much pop) or spends too much time on the computer (rather than getting fresh air and exercise). Yesterday I laid into him for forgetting his medicine the night before, even though I’d placed it in plain sight! When I launched into what was to be an annoyed lecture about taking his health and transplanted kidney for granted, he stopped me dead in my tracks. “I don’t take my health for granted more than the average person,” he said in so many words. He informed me he wouldn’t listen to a lecture and politely closed the door in my face. (Owned! Maybe I should have tried spanking him since I’m an obvious failure as a Nag.)
The door-in-the-face made me stop and think for a moment about what Jake has done with the gift he received from his deceased donor. Every day that he lives his life and contributes something to the world, he is showing his gratitude. I had to remind myself that he has the right to be human, to be lax once in awhile. I had to stop and count my own blessings from which Jake has been the conduit. Jake makes a difference in my life every day. And he really doesn’t mistreat his body. He’s simply not a fanatic about taking care of himself. But few of us are. Why should I hold him to a standard I can’t achieve myself just because he has something nature should have given him to begin with. (Let’s not overthink this too much, Chris. There are all sorts of philosophical snake pits we could get into here.)
I took the easy way out as a living donor; since I couldn’t donate to Jake, I found someone I didn’t know and gave away my left kidney. Her name is Deborah. I’ve maintained an emotionally safe distance from Deb, even though I know who she is and could speak with her if I desired. It seems that the emotional stakes are higher in living donation… both for the recipient and the donor.
But the truth is, I don’t really need to know how my kidney is working for her. I merely wanted the satisfaction of giving someone the same opportunity my son had received. I would like to think that she, like Jake, has taken that gratitude and uses it the way the rest of us do: paying it forward. It would irk me to imagine a conversation between Deb and her family in which she’s “nagged” about occasional non-compliance. It would bother me to know that, at any time, she ever felt guilty about indulging in the sweet things out there in the world that aren’t necessarily healthy. Obviously I hope she doesn’t drink too much or engage in unhealthy habits. But there again, who doesn’t have a vice or two?
Imperfections do not imply lack of gratitude. They simply mean imperfection. Gratitude wears many costumes and window dressings. The next time I wonder why someone takes life for granted, I’ll have to remember to look at myself in the mirror and do some inventory in my own life.
Do transplant recipients have the right to take their bodies for granted, and therefore the gifts they’ve been given to improve their health? Do they have a moral obligation to cherish every moment of every day? Yes, we all have those rights, obligations and choices. Most of us take life for granted. Most of us have moments of immense gratitude. If we’re actively and frequently sharing our love, gifts and talents with the world, we have earned the right to relax our standards from time to time. Hopefully we are ultimately working toward remaining balanced in our perfections and imperfections.
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Kidney Transplant: Change in recipient’s life post-transplant
Posted: June 26, 2011 Filed under: Living Organ Donation | Tags: chronically ill children, dialysis, kidney transplant, life after transplant, living organ donation Leave a comment »Today on the Living Donors Online Message board, Shelley asked living donors to post thoughts on life for their recipients pre- and post-transplant. I wrote the following reply that I’d like to copy here. The changes in Jake’s life (my son) were so astounding from a deceased donor kidney, I was inspired to donate to “pay it forward” and become a living donor to someone else in 2007. Here is what I wrote earlier about Jake’s before & after…
My son received a deceased donor kidney in 2004 when he was 13, which is one reason I became a donor in 2007. Jake was a just a boy during the time he was on dialysis (9-years to 13-years old) and the routine limited him and us in so many ways. The changes in his life after the transplant were unprecedented:
Before:
~ Jake had been on peritoneal dialysis for 4+ years. Where peritoneal offers the convenience of home treatment, it has to be done daily and the treatments take hours and hours. Therefore, Jake was hooked up to the machine every evening before bedtime, then dialyzed all through the night.
~ Neither he nor I slept through the night during that period. He was 9-years old when he started and 13 when he received his new kidney. Kids tend to move around a lot when they sleep, and sometimes several times a night, Jake would kink the tubing, which caused the dialyzer alarm to sound. There were nights when I was up to deal with the alarm 6-8 times. For four years, neither of us knew the meaning of a good night’s sleep.
~ Every morning before getting ready for school, he had to be weighed, BP checked, “flow charted”, etc. His catheter site dressing (bandage) had to be changed.
~ He had to receive a daily Epogen injection (growth hormone) and weekly Procrit injections. After a time, he learned to give himself these injections.
~ He had to have blood work every two weeks (and sometimes every week). Like the injections, after a time he stopped screaming every time he went through this.
~ We were constantly changing his meds to accommodate the changes in BP. The so-called “rescue” meds he took when his BP got too high made him feel like sh!t.
~ He only had one friend whose Mom was willing to deal with the dialysis hassle overnight, so he missed 99% of the sleepovers and camping trips.
~ Traveling was a nightmare. We’re in NY, but my family is down south. If we went on any kind of vacation, it was total stress. We had to plan and order supplies for delivery to our destination, and hope that we had everything we needed for the overnight stop while we were en route. Inevitably, we would leave something crucial behind… a clamp, a piece of tubing or connector… and Jake would miss a dialysis treatment. This wasn’t life threatening, but it meant that was the first order of business as soon as we arrived to wherever we were going. We didn’t do much visiting during that time.
~ He had no energy. No childish play-till-you-collapse except on rare occasions. Jake’s childish activities were quiet ones.
~ He was depressed, a depressed 9-year old. Sometimes he was angry. Sometimes I was angry.
Life after the transplant?
~ None of the above.
Author’s Note: I have written a number of posts about my experience with organ donation. I have lived it from the perspective of recipient’s parent, donor’s significant other, and living donor. Additionally, my youngest son has recently informed me that he would like to be a living, altruistic donor, a decision I do not support at his young age (18), and would like to think would not be supported by any U.S. or Canadian transplant facility.
Please feel free to contact me at bsidechris@yahoo.com.
Has kidney donation affected my mental health?
Posted: March 6, 2011 Filed under: Commentary, Depression, Living Organ Donation, mental health | Tags: Christine Robinson, depression, health, kidney donation, mental health, perspective, prozac Leave a comment »In December 2007 I donated my left kidney to a lady I’d never met. I was motivated to do so by faith and gratitude: My son Jake had received a deceased donor kidney three years earlier, a gift that dramatically improved our quality of life. And as a practicing Catholic committed to living my faith, I felt called to share with someone the blessing we had received.
It’s difficult to admit this, but I believe that if I’d fully understood the mental health risks of living kidney donation, I would not have gone through with it. On the other hand, I’d read that many a living kidney donor has dealt with the blues following surgery, but I couldn’t have anticipated the depth or duration of my own depressive experience. I don’t believe the act of or the physiological changes caused my depression; low phases have been a part of life since my teens. What’s different (wrong) now is that I have yet to fully return to my pre-donation resilience. That is, I have yet to fully “bounce back” from the post-donation low without the long-term use of Prozac.
I do not regret being a donor. The combined experiences of coordinating the long-distance donation; the thrill and honor of giving an organ; and insights and coping skills gained have made me a stronger, perhaps more capable person. The ultimate is that there’s a woman a few miles south of here who is extremely grateful to have my kidney. I’m so glad it works for her.
But what would I say if one of my sons wished to be a living kidney donor? I would say, “Please reconsider.” And if they were determined, I would say, “Please be entirely forthcoming with information about your mental health history during the evaluation process. And research the issue of post-donation depression with an open mind. Try to be as objective as possible.” (And *I* would try to be as objective as possible.)
Post-donation depression has been compared to postpartum blues. (My kneejerk reaction to reading that was Yeah… just as legitimate, but simpler to dismiss.) Some reports indicate that women suffer longer and more deeply than men, and more often resort to antidepressants. Recipient outcomes also have a bearing on a donor’s emotional perspective, of course. The quality of follow-up care can influence a donor’s outlook.
Outlook? The fact that the words “outlook” and “mental health” are used interchangeably in some of the research summaries is irksome.
I do not wish to proclaim unequivocally that living kidney donation causes or worsens depression. But my experience has been that my mental health tenacity has declined, and that this negative trend began immediately following my 2007 donation, and has persisted far beyond the duration of prior depressive episodes.
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See also, An Ethical Debate on Repeat Living Organ Donation
and Living Kidney Donor Advocacy: FAIL
Living Kidney Donor Advocacy: FAIL
Posted: December 1, 2010 Filed under: Commentary, Living Organ Donation | Tags: donor advocacy, liver donation, living donation, Living Donors Online, living kidney donation, Toronto General Hospital, transplant centers 1 Comment »Dear Toronto General Hospital – Living Kidney Donor Program:
You really need to do a review of your Living Kidney Donor Program, particularly the donor advocacy, inpatient care, and follow-up components. The issues raised during my friend’s donation should be an embarrassment to your staff, donor program, and facility.
My friend is a multiple, altruistic donor; liver lobes in 2009, and kidney in 2010. His liver donation experience was a shining example of how a living donor program SHOULD run: thorough assessment, superb advocacy during his hospital stay, excellent follow-up post-donation. He worked with a great team of professionals who advocated for him every step of the way.
After we became acquainted last January and he informed me of his intent to donate another organ, I was concerned: two major organ resections in less than two years? The bioethical issues prompted many heated conversations between us, and I could never bring myself to embrace the concept of multiple living donations. Meetings with various professionals there at your facility provided some reassurance, but never fully laid my concerns to rest. But it was his decision to make and I reluctantly supported him from a distance. After passing all health evaluations and liver donation follow-up milestones, his kidney donation surgery was performed at your facility.
His treatment as a living donor and a patient during and after his hospital stay has been a shameful example of medical arrogance and negligence. The following concerns were brought to the attention of the Multiorgan Transplant Program Social Worker:
Negative contrast in the donor advocacy level between Liver program and Kidney program.
~ During liver donation, an advocate was present throughout–from admissions up to the time OR prep. During kidney donation, my friend was on his own from the time of admission until… still.
~ During hospital stay, my friend was told to “be more careful” when he accidentally pressed the Nurse Call button.
~ Over the course of his stay, the only transplant professional ever seen was the surgeon. Why? Where was the support system?
~ Where is the follow up care, advisement, and reassurance post-donation? On discharge, not only was my friend given wrong dates for follow up appointments, but additionally, he received virtually no “patient education” about fluid intake, sodium management, wound care, pain management, etc. He has received no calls to gauge his condition since his discharge.
Misrepresentation of pain level of “open” nephrectomy versus laproscopic, which was compounded by the fact that he received VERY poor pain management during hospital stay.
~ Open surgical procedure was presented as only slightly more “uncomfortable” than lapro. There was no advance warning of “prying ribs open,” although when he asked about the pain in his chest/torso, this was the explanation offered.
~ Prior to donation, my friend was assured pain would be diligently managed. The reality was that the management of his pain was anything BUT diligent. The unit staff were inconsistent and inattentive.
~ Less than 32 hours after surgery, my friend’s IV line became dysfunctional, and thus, he spent the second night after his donation using only OVER THE COUNTER pain control. His IV pump was improperly adjusted, therefore his meds squirted onto the floor instead of into his veins.
~ He was later told by a unit nurse that “all you had to do was ask.” He actually DID ask, but the night nurses only offered excuses, delays and GUILT.
Overall quality of care was poor in comparison to the liver donation: Poor. Again… WHY?
~ My friend paid for a semi-private room (to be reimbursed by insurance). Nonetheless, he was removed from the room at 11am on his discharge day, in spite of the fact that his ride home would not arrive until hours later. The room remained empty as he sat in the patient lounge ill-equipped for comfort.
~ The unit was host to a thoroughly disruptive lunatic who shit in the hallway, verbally abused the staff, and made the unpleasant business of being in the hospital considerably worse for every patient there.
Did I mention that my friend is an altruistic organ donor? A MULTIPLE altruistic donor. Typical of the altruistic donor, his primary objective was/is to improve the life quality of his recipients. While I fume and stomp in indignation over his treatment, he humbly reminds me that the end result for the recipient is the same: receipt of a good, working organ.
Yes, I agree. Nonetheless, it’s unconscionable that a living organ donor should be so poorly cared for in light of such a generous gift. No donor expects a ticker tape parade or a gold medal or a divine blessing for engaging in the act of generosity. That is not our purpose.
But honestly, is it too much to ask that a living donor be afforded the best that medicine and living donor programs have to offer? Or that kidney donors receive the same level of advocacy as that of liver donors? Or that all donors receive adequate pain management, inpatient and follow-up care?
Your program readily accepted the generous gift that my friend gave to one of your kidney patients. But you failed to appreciate that gift. You failed my friend, and thus you fail every living donor that follows in his footsteps.
As an advocate of living organ donation, I take that failure very personally.
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See “An Ethical Debate on Repeat Living Organ Donation” for additional insights into this matter.
An Ethical Debate on Repeat Living Organ Donation
Posted: August 22, 2010 Filed under: Channy, Commentary, Living Organ Donation, Love | Tags: "first do no harm", donor evalution, kidney donation, liver donation, living organ donation, multiple donation, repeat donation, transplant standards 1 Comment »Let me ask you this: If your living adult son donated a liver lobe to a stranger, would you support his desire to later donate one of his kidneys? Yes or no? What if the kidney recipient was your other son?
Luckily, this is not a scenario I’m dealing with. But it’s close enough that I find myself having to consider the pros and cons, the ethics, motivation, and business principles behind multiple living organ donation. That is, someone I love is being evaluated for a kidney donation, despite the fact that he donated a liver lobe just last year. Both donations are of purely altruistic motivation; he didn’t know his liver recipient; he will not know his kidney recipient. There is nothing in my friend’s background or personality that suggests his intent is self-serving. He’s lived a life of immense generosity and possesses a rare level of compassion.
As a living kidney donor myself (and mother of a cadaveric kidney recipient), I obviously support organ donation. But my gut feeling about donating more than one major organ is that it’s too risky for the donor, which challenges the most basic medical principle: First, do no harm. It’s not my friend’s intent that I question, but rather the morality of the transplant center willing to push the envelope on living donation, putting my friend at risk, and every repeat donor that will surely come after.
Consider blood donation in the U.S.: There are basic, nationally-accepted standards related to donor safety. A reasonably healthy individual may donate whole blood every two months. Considering the long history behind blood donation, safety practices were no doubt established through trial and error: how much, how often, under what circumstances might a donor be deferred. Blood collection facilities follow standards set by the FDA that ensure both the safety of the blood supply and the donor.
With living organ donation, there are accepted standard criteria for donor health, but there is no governing body setting irrefutable regulations pertaining to living organ donation. Am I correct in my understanding that transplant centers set the criteria, determine the extent of donor evaluation, and typically have a committee of decision-makers to determine a potential donor’s eligibility (or ineligibility)?
The American Society of Transplant Surgeons has more that 25 committees and task forces that examine a range of issues related to transplant. They’ve released position papers on matters of legislation, living donor evaluation, insurance, scientific research, and a vast range of concerning or emerging topics. As yet, though, there is no stated position on the issue of repeat living organ donation. In fact, I could find no position papers or statements from any professional or interdisciplinary organization. In large part, because repeat donation is so rare.
This ethically delicate issue is not one that should be examined by potential donors in the process of doing a repeat donation. Or their concerned loved ones. My opinion is that the concept of repeat donation should be discussed and examined by a diverse consortium of transplant surgeons, scientists and related professionals. Only after a solid consensus is reached should there be a move among transplant centers to place a living donor at such risk.
Moment’s Pause, Looking Back
Posted: August 14, 2011 | Author: Christine Robinson | Filed under: Children, Commentary, Family, Growing Up, Memories | Tags: chronically ill children, dialysis, kidney disease, parenting sick children, Pulse Therapy, steroid treatment, transplant | Leave a comment »I do not wish to dwell in melancholy past lives, but now and then, something reminds me. This morning while I was lying in bed trying to go back to sleep, I was thinking about my son, Jake.
Reflecting on how much he’s grown and how little his medical issues affect him outwardly, I recalled some of the worst times he’s been through. Jake was diagnosed with chronic kidney disease at age two, mere weeks after I’d given birth to his younger brother, Cory. This diagnosis came as a result of peritonitis, which kept us in the hospital for more than a month during the 1992 holiday season. After seven years of progressive kidney failure, he began dialysis. After four years of that, he had a successful transplant from a deceased donor. He is now 21-years-old and has had a working kidney since 2004.
The years between 1992 and 2004, though, were marked with unthinkable struggles a child should never have to face. (But alas, so many do because life is unfair.) What I was lying in bed remembering this morning was the period during which Jake was receiving “Pulse Therapy,” a high-dose, intravenous treatment often given to cancer patients to induce a remission.
Jake behaved like a caged and abused animal during those many months, never knowing if his mother was going to pick him up to love and coddle him, or to commit some medically necessary molestation. My heart breaks in two when I remember having to hold him down so the nurse could administer the medicines, and those times (twice a day) when I’d have to pry his mouth open to squirt meds down his throat. The trauma and drama – at the hospital and at home – were ceaseless. At two-years-old, he didn’t understand that we were trying to make him better; all he knew was that he was being constantly harassed and harmed, and that he had no safe place to hide.
He never, ever went quietly. Daily dressing changes to protect the Broviac catheter in his chest, blood draws, injections, meds, vital signs, white coats, monitors, etc., etc. Some of the treatments–usually steroid-based–made Jake psychotic. No exaggeration there. By the time he was old enough to talk (later than most kids), he had an impossible time of keeping his emotions in check. The steroids caused his blood pressure to skyrocket, his energy levels to rise to unimaginable heights, then crash, and his temper to rage.
There were times when I simply couldn’t handle the outbursts. I remember many occasions during which Jake would be placed in his crib so I could have a moment’s peace. But there was no peace and no quiet. He’d stand there with his beet-red moon face, hands gripping and shaking the sides of the crib. Screaming and crying, he’d yell “Happy! Happy, Mama! I happy!” when he was clearly very UNhappy. We all were.
Jesus Mary, those times were hell!
On one hand, it seems remarkable that he’s done as well as he has in his young life. On the other, Jake’s outer person does show a bit of wear and tear… a lot like my brother, Chuck. He looks weathered somehow, in spirit and in body. You can see it in his eyes. In fact, when Jake was younger, he reminded me so much of my now-deceased brother that I’d often call him “Chuck” by mistake. The similarity in their voices, mannerisms, humor… all rather uncanny. So uncanny, in fact, that I used to believe Jake’s sorrows and early struggles would lead him down the same paths my brother took, and that their fates would be one in the same.
That feeling has given way to a more positive outlook. I no longer worry that Jake’s life will end as sadly, tragically as Chuck’s. Jake’s bypassed the allure of drugs. He lives with purpose. He has hope. He takes decent care of himself. Given all he’s been through, I find his resilience extraordinary.
Jake has embraced the changes life has brought lately. That’s not to say he doesn’t bristle at the upheavals, but once settled, he seems to move on… and quickly. Within hours after arriving here in Buffalo, Jake was out for a new haircut, a wardrobe update, and a night on the town. ”Hello, new town! I have arrived!” In less than a month since our landing, he’s already insinuated himself at certain nightspots, and NOT for the purpose of drinking, but for the purpose of making friends, finding new interests, delving into new challenges.
Last Tuesday Jake did his first-ever comedy bit at Nietzsche’s open mic night. I’ve learned not to doubt Jake’s determination and focus. When he puts himself into a thing, he goes “full balls” and always comes away with something salvageable, even if the experience might have been deemed a failure. But his Tuesday outing was nothing but grand! He was one of the first to go on stage, which is normally considered bad luck, as it’s too early in the evening for the crowd to be warmed up and friendly. But Jake got laughs at (almost) all of his jokes, and even received an unprecedented “clap break”. (Clap Break means the audience laughed at his joke and gave him so much applause he had to halt his momentum for a time.)
My son. Who would have known as he was standing on that stage that he’s been through so much?
This is why I don’t like to dwell in the melancholy places. Why mar the now with the sorrows of yesterday? It disrupts today’s peace and drains the energy from the spirit. So now that I’ve got that off my chest… Life goes on once again.
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