David Clark is a nurse anesthetist at Montgomery County Memorial Hospital in Red Oak. He recently had a kidney transplant. In honor of April being Donate Life Month, he decided to tell his story. Here it is in his own words.
I found out when I was 17. It was just a fluke, really. I was in a high school health class that visited the local hospital for a day. They sent me to watch some ultrasound procedures in X-ray, but that particular time they had no patients so they used me to perform an ultrasound. The tech said, “Let’s look at your kidneys. Everybody likes seeing kidneys.”
Well, not very many people had kidneys like mine. Mine were full of cysts. It kind of freaked out the tech, but polycystic kidney disease (PKD) runs in my family so I was not shocked. My mom, my aunt, and both of my sisters had it, as well as countless past relatives that I never knew.
Being so young, I failed to fully realize the seriousness of this discovery. I told my mom about it and all she said was, “Don’t tell anyone about it or you won’t be able to get life or health insurance.” You see, one of my sisters also found out at a young age during a scheduled test so it was in her permanent health record. She never could get private health or life insurance unless she participated in a group plan, so I kept it secret. I told no one. I think for a while I even convinced myself that my kidneys were just fine. They weren’t.
Polycystic kidney disease is the most frequently inherited disease in the United States. More than 600,000 people in the U.S. have it, and more than 12 million suffer worldwide.
PKD causes the formation of cysts in the kidney that grow over time. These cysts grow and push normal tissue out of the way and slowly affect the function of the kidney. Kidneys can grow to be the size of footballs and weigh up to 20 pounds. Mine were almost the size of a football.
Since the kidney is over-engineered, it takes a long time to see any changes, but inevitably, kidney failure is the end result. There is no cure. Options are dying, dialysis or a kidney transplant.
If you have never heard of PKD, you are not alone. We are pretty quiet about it. It’s not a glorious disease, and patients have a reputation of being difficult. We get cranky and itchy and have leg cramps. We are generally short-tempered. These are generalizations, of course. Some get along pretty well (like me) and some are completely disabled by their symptoms.
About 16 years ago, I had a bad kidney stone attack that landed me in the hospital and led to a three-hour surgery to remove the three stones. Needless to say that the cat was out of the bag. My polycystic kidney disease was in the open. I decided to start seeing a nephrologist to monitor my condition. For 15 years, I did just that.
In 2015, notable changes started. My kidneys had reached a point where they could not keep up as much and lab values began to rise. As my levels continued to rise, the symptoms of kidney failure began to get worse; itching that would not go away, being tired all the time no matter how much sleep I got, irritability, and frequent nausea with eating.
In January of 2016, my levels reached the point where I qualified to be put on the kidney donor list. This meant a complete two-day workup, about a gallon of blood draws, and counseling. Once I was approved and put on the donor kidney waiting list, I was told that the average wait time for my blood type was 18 months unless the perfect kidney presented. I was to remain within a two-hour radius of Omaha and to avoid getting sick. A donor could be found at any time and I would have to drop whatever I was doing a report to the hospital.
Average wait time of 18 months – I didn’t think my native kidney would keep working well enough to keep me from needing dialysis for that long!
Why is the wait so long? There is a lack of kidney donors. There are more needs than can be filled in a timely fashion.
In the early morning of last Aug. 11, I got a call from the Nebraska Medicine Transplant Office. They had a kidney for me. I had only been on the list for four months. I definitely was not expecting a call this soon. I was speechless.
Several things went through my mind – first, disbelief, then panic, then excitement. My wife and I had to make several quick phone calls to family and work (I was on call at the time), pack up some things, and then drive quickly to Nebraska Medicine to check in. That day was a whirlwind of activity with final tests, visits with all the staff that would take care of me, and family coming in.
After waiting 20 hours I was finally taken in for my transplant. For me, the next thing I knew was waking up and in a little pain. It was all over. Just like that I had a new kidney! My doctor said everything went great and that the kidney was already working hard. What a special thing that was to hear.
I later learned that I received what amounted to the perfect kidney and that is why I was moved to the head of the line. My doctor said that even a family member donor would probably not have been as good of a match as the one that I received.
Now for the hard part of the story.
In my case I received a donor (cadaver) kidney meaning someone had to die first before the kidney was made available. Someone died for me to live. I am grateful for the gift and blessings I received that day but somewhere out there was a family grieving at their loss. For a long time I took that very hard and would get emotional just thinking about it.
In December I received a special holiday surprise – a couple of letters from the mother and aunt of my kidney donor. I found out who my donor was. When I say I found out who she was, I don’t just mean her name. I mean I “found out” who she was. What I learned that day was that there is a higher power out there and He works in very mysterious ways.
This person was not only a match to me physically, but we were also a match in our personal lives. Personality, interests, temperament – all were a good match. This person had been involved in a car accident 10 years ago that almost claimed her life. She survived, but that accident changed her.
That was when she made the decision to become an organ donor. She also informed her family and they supported her decision. I say this because until I read that letter, I was feeling guilty. I am still emotional about the whole thing but not guilty anymore. Her family is grateful that her death was not the end of her story. A part of her is living in so many other people. Her mother expressed thankfulness that I was blessed with this gift of life. My donor’s nickname was “Ladybug” and out of tribute to her I have named my new kidney “Ladybug.”
My life has been changed by the gift of a kidney donor. As a result of my experience, most of my wife’s family has decided to become organ donors. I hope and pray that more people hear stories that impact the way that they feel about organ donation. There is so much need out there.
Twelve years ago, Kathy Good and her husband, Dave, were looking forward to the adventures of retirement together – Dave was a district court judge; Kathy was a therapist and licensed social worker.
“Dave started having vision problems,” Kathy recalls. “He was having trouble reading jury instructions. He got new glasses; he had cataract surgery, all to no avail. Eventually it was determined by a neural ophthalmologist that he had something called the visual variant of Alzheimer’s disease.”
Alzheimer’s disease – he was 56 years old.
Suddenly, both of their lives changed dramatically. Kathy began plans to care for David in their home – she became a family caregiver. Caregivers are often thrust into their new roles unexpectedly, with no understanding of services available or how to navigate the systems they’ll encounter.
Kathy was fortunate; she had a background in social work and knew where to start. Using her professional know-how, she assembled what she called the “committee” (services that helped Dave remain independent at home). She considered herself very lucky to have had the means to create a support system for Dave – she knew a vast majority of family caregivers had no help at all. She carried the thought of those caregivers with her as Dave’s needs changed and she adapted to meet those needs for over a decade before he passed in May 2015.
Today, she is well-known in the Cedar Rapids community as a resource for family caregivers. This prompted Tim Charles, Mercy Medical Center-Cedar Rapids President and CEO, to call upon her for insights into an idea for a new program – a community-focused family caregivers center that would offer a wide range of services to improve the overall well-being of family members caring for a chronically ill loved one.
“The stress of caring for someone with a chronic condition like Alzheimer’s, diabetes, heart problems –all chronic diseases – can cause caregivers to be depressed and anxious, to develop their own chronic conditions,” Kathy states. “They may have weakened immune systems. They may be at risk for their own mental decline. That’s just a few of the major things that could happen to a family caregiver when they start having to live life for, in essence, two people.”
She jumped at the opportunity to help other caregivers.
Since 2014 she has dedicated hundreds of hours to research, workshops and networking to bring the idea of a family caregivers center to life. She has met with caregivers to talk about their needs and human service agencies to talk about their existing support systems, determining gaps in services and formulating a plan to bridge those gaps through the center, ensuring services are not duplicated.
The Family Caregivers Center of Mercy is the product of her work – a unique, first-in-the-state initiative that will be funded through generous gifts to the Mercy Foundation’s Family Caregivers Center Endowment. October 2015 kicked off the foundation’s fundraising efforts with the goal of raising $2.5 million to fully endow the center. A full endowment means the center can offer services at little-to-no cost to the caregiver – a critical need.
The innovative center will be one of the few in the nation (and the only one in Iowa) using a community-based model, meaning that no matter where a loved one receives care – home, assisted living or hospital – the caregiver can find support. Some components of the Family Caregivers Center of Mercy include respite care; therapeutic outlets of journaling, massage and art; along with a 24/7 care line to answer any kind of question the caregiver might have. A resource library will be available and education sessions will be held on a variety of topics. The center celebrated its opening in December 2015.
Encouraging doctors and nurses to wash their hands frequently has always been considered an easy and effective way to curb the spread of infection in hospitals and other health facilities.
But a new research letter published Monday in JAMA Internal Medicine points to another key group of people who aren’t always keeping their hands so clean and, it turns out, probably should: patients.
Researchers focused on inner-city Detroit and examined patients who went from hospitals to post-acute care facilities — places like rehabilitation centers, skilled-nursing facilities, hospice and long-term care hospitals. They found that almost one in four adults who left the hospital had on their hands a superbug: a virus, bacteria or another kind of microbe that resists multiple kinds of medicine. While in post-acute care, about 10 percent of patients picked up another superbug. Of those who had superbugs, 67 percent still had them upon being discharged, even if they hadn’t gotten sick.
These findings add to a growing body of research about hand hygiene and the patient’s role in infection transmission, and speak to an underlying problem with health care facilities — they can increase the odds of getting sick. The paper’s authors suggest it highlights a potential, so far underused strategy for addressing that concern: getting patients to wash their hands.
Conventional wisdom has long held that doctors and nurses — who go among sick patients — are most likely to transmit germs. As a result, few health care settings really make patient hand-washing a major priority, said Leah Binder, president of the Leapfrog Group, a nonprofit organization that grades hospitals on patient safety.
The paper, she said, “really requires an immediate response” from safety advocates.
“We have to revise hand hygiene policies to include patients. One of the main strategies on hand hygiene is to make it easy to wash hands,” she said. “Most hospitals have either sinks or dispensers near the door of every room, so that it’s very easy for a provider walking in to immediately wash their hands. Do we make it easy for patients to wash their hands? I doubt it.”
Beyond that kind of architectural change, signs should be visible around facilities to remind patients about hand washing, she said.
But just because patients are carriers of superbugs it doesn’t mean they will get sick, said Lona Mody, a professor of internal medicine at the University of Michigan-Ann Arbor, and the study’s corresponding author. There needs to be more research to measure the relationship between carrying germs and falling ill, she added.
If you have superbugs on your hands, though, you probably have them elsewhere too — in your skin or in your gut, said Louise Dembry, president of the Society for Healthcare Epidemiology of America and a professor of medicine, infectious diseases and epidemiology at Yale. Having them on your hands makes them easier to spread.
Plus, the patients in these kinds of facilities are, almost by definition, more vulnerable to infection, Binder said — they’ve just come out a hospital where they needed a high level of care.
“I find it not difficult to imagine” that a number of these patients will end up with serious infections, she said.
Spreading germs is also easier to do in post-acute settings, Dembry noted, since patients are more likely to interact with each other. Patients are encouraged to move around more and, as a result, more likely to touch medical equipment and furniture, among other things, which can spread the germs, Mody said. Overall, these circumstances increase the odds of transmitting germs and up the need for better hand-washing protocols.
Dembry added that hand washing can be only one part of any strategy to prevent infection. Medical tools and machines need to be kept clean. Culturally, patients should feel comfortable asking each other if they’ve washed — and steer clear if they might be infectious.
As health care facilities are increasingly evaluated on how well they care for patients, they should be rewarded for things like promoting clean hands, Mody said.
For instance, “if an institution has a program that enhances patient hand hygiene, the quality of that place should be considered higher,” she said.
The findings call for more research, Mody said, to see how widely they might apply. Researchers will want to examine how the settings examined here compare to transmission among patients within hospitals, she added, and study geographic regions other than inner-city Detroit — though she anticipated they might find similar results.
“This particular finding to us, from a public health standpoint has opened a whole new line of inquiry,” she said. Meanwhile, “From a policy perspective, we need to design and test the effectiveness of and implement novel programs that reinforce patient hand hygiene.”
But this time around, unlike three years ago when the court rejected a constitutional challenge to the law’s individual mandate, the case, King v. Burwell, focuses primarily on statutory interpretation.
The issue is whether section 36B means what it seems to say if read literally and in isolation from the rest of the law: that Affordable Care Act subsidies are available only to people “enrolled … through an exchange established by the state.”
And the different interpretations have proven dicey — so much so that each side in the case is having trouble explaining away the evidence supporting the contrary position.
Solicitor General Donald Verrilli and other defenders of the subsidies have failed to suggest any very plausible reason — other than sloppy draftsmanship, on which Verrilli has not much relied — why Congress said “established by the state” if it intended that subsidies also be available in the federally established exchange.
On the other hand, ACA opponents who read “established by the state” literally have produced little evidence that the law’s drafters deliberately and quietly planted in an obscure subclause the words that could become the seeds of the law’s destruction.
Plaintiffs in the case suggest that the drafters inserted these four words in order to pressure states to establish their own exchanges. But the legislative history offers scant evidence of this intent. And the three dozen states in question either failed to notice or disregarded it.
How these explanations sway the justices — or at least five of them — will determine whether the language drafted by Congress means that nearly 6.4 million low-and-middle-income people are not eligible for the overhaul’s tax subsidies because they live in a state that chose to rely on the federal government’s healthcare.gov, rather than establish its own online insurance marketplace. The subsidies make insurance affordable to many of the people who seek Obamacare coverage because they don’t get health coverage through their employers.
If the court rules that the subsidies are available only in states — mostly blue — that established their own exchanges, insurance markets in the other three dozen or so states might collapse. Unless Congress or the states reliant on healthcare.gov were to move fast to limit the damage, few people in those states would buy individual insurance. Those who did would likely have health problems and premiums would soar.
Many ACA opponents say that section 36B “means what it says,” as conservative Justice Antonin Scalia implied at the March 4 oral argument, even if the wording “may not be the statute [Congress] intended” and even assuming that it might “produce disastrous consequences.”
To the contrary, say Verrilli and other supporters, the law’s overall text, structure, design and history make clear that Congress intended to make subsidies available in all 50 states. They say the challengers’ interpretation would defeat the law’s purpose of making health insurance widely affordable. The Internal Revenue Service came to the same conclusion in an interpretive rule, to which Verrilli argued the justices should defer if in doubt.
As in 2012, the stakes in King v. Burwell are so high that Obama has made it clear that he would attack any decision that would cripple the health law as legally indefensible and politically motivated.
“[T]his should be an easy case,” Obama said June 8. “Frankly, it probably shouldn’t even have been taken up … based on a twisted interpretation of four words. … I’m optimistic that the Supreme Court will play it straight.” The next day, he added (without specific reference to the court) that “it seems so cynical to want to take health care away from millions of people.”
These shots across the court’s bow came even though Scalia and Justice Samuel Alito had strongly suggested during the argument that they would vote against the administration’s position.
Alito also suggested the possibility of delaying until 2016 the effective date of any decision against the administration. Such a delay, he said, would give the states and Congress time to avoid the disruption that would be caused if the court ruled the premium subsidies now available in the three-dozen states using healthcare.gov are illegal.
Justice Clarence Thomas, who was silent as usual during the arguments, is expected to vote with Scalia and Alito. The four liberal justices — Ruth Bader Ginsburg, Stephen Breyer, Sonia Sotomayor and Elena Kagan — seemed poised to line up with Obama. So the president will win if either Chief Justice John Roberts or Justice Anthony Kennedy sides with him.
While Kennedy’s vote is still up in the air, ACA supporters were cheered by his assertion to the lawyer challenging the subsidies that “there’s a serious constitutional problem if we adopt your argument.” Kennedy reasoned that the states are being unconstitutionally “coerced” if, as the challengers argue, the law requires them either to establish their own exchanges or see their residents disqualified from the subsidies.
The only way to avoid constitutional problems, suggested Kennedy, may be to resolve any ambiguities in Obama’s favor. This seemed inconsistent with the suggestions by Scalia, Alito and the challengers that the relevant language is free of ambiguity and without constitutional problems.
Roberts was sphinxlike during the argument in King v. Burwell. The case puts him in an unenviable position.
When Roberts stunned court-watchers by joining the four liberal justices and upholding the individual mandate in the 2012 decision, National Federation of Independent Business v. Sebelius, he was bitterly assailed by his usual allies — Kennedy, Scalia, Thomas and Alito — and was called a traitor by many other conservatives.
This barrage was intensified by a well-sourced news report that Roberts had initially voted to strike down the individual mandate and changed his mind — provoking a huge battle inside the court — after liberals led by Obama had preemptively denounced any decision to strike down the law as politically motivated, conservative “judicial activism.”
The conservative denunciations of Roberts will be even more bitter if he sides with Obama this time, too. On the other hand, if Roberts votes with the other four Republican appointees to gut the Democratic president’s signature accomplishment, it will feed the kind of attacks that the chief justice dreads on the Roberts court’s conservative majority as a bunch of robed politicians.
Looking to the future, a ruling against Obama could be extremely awkward politically for Republican members of Congress, presidential candidates and officials in the mostly red, affected states, even though it might be cheered (at least initially) by Republican voters.
In this scenario, the president and other Democrats would immediately demand that Republicans help them save the subsidies of millions of people at risk of losing their health insurance, by adopting new legislation.
Some Republicans say this would be an opportunity to extract compromises from Obama such as more choices for consumers – especially less expensive, less comprehensive health insurance options; the elimination of the mandate to buy insurance; or restrictions on medical malpractice lawsuits.
Others predict a humiliating and internally divisive Republican cave-in to avoid being blamed for the “disastrous consequences” that Justice Scalia hypothesized.
Whatever the outcome, the chief justice, in his tenth year on the Court, is in for a long, hot summer.