It's been a dry week.
Zer0. Zip. Nada.
Today, the urine output box shows 46 mL overnight.
Less than an ounce, but an important sign of the return of kidney function.
Keep it up, kid.
Urine is golden.
It's been a dry week.
Zer0. Zip. Nada.
Today, the urine output box shows 46 mL overnight.
Less than an ounce, but an important sign of the return of kidney function.
Keep it up, kid.
Urine is golden.
Sigrid Fry-Revere is a lawyer and a medical ethicist. She has played an advisory role to organ donation organizations in the US. Her latest work explores the kidney "exchanges" in Iran where a very different approach to organ donation has produced a surplus of living kidney donors.
The approach in most of the world has been to use deceased donors for transplantation as much as possible. Kidneys provide a unique opportunity for living donation, since most people have two and can live nicely with only a single organ. Our system requires these kidneys be donated from purely altruistic motives, usually because of relationships between the parties involved: husband - wife, parent - child, or other relations. When relatives or other close parties cannot donate, a donation "circle" can be set up. In this, one party cannot donate to their loved one, but they are a match for someone else whose relatives cannot donate. In the simplest setting, the donor exchange is paired; however, chains of up to 19 donors and recipients have now been orchestrated to give dialysis patients a better life. While many donor expenses are covered by medical insurance, donating may have unseen expenses, including weeks out of work and the potential for complications of anesthesia and surgery.
Despite harvesting deceased organs, matching services for donor chains, and availability of dialysis, 20 to 25 people in the US die every day awaiting a kidney.
Iran has taken a different tactic to alleviate kidney shortages, namely paying organ donors. The powers that be in the US have assumed that this system is coercive and unfair. Dr. Fry-Revere decides that a program this successful is worth learning about. She spends several months on the road in Iran with an expatriate nephrologist, Dr. Bahar Bastani, a former colleague of mine at Saint Louis University. They bravely recorded video and audio interviews with doctors, nurses, donors, and recipients throughout Iran, generating the first account of this system by Western experts. The resulting book is The Kidney Sellers: A Journey of Discovery in Iran.
In Iran, the national government provides a cash payment for a kidney. Additional compensation varies by region. Most regional centers provide health coverage for a period of time for donors. The donor can then negotiate with the seller through the regional bureau for additional cash; if the recipient has no means to pay, the center can often tap donations for the funds needed.
Procedures vary from region to region. In the best situations, donors are carefully screened to make sure that their financial issues cannot be solved through other routes. Potential donors interviewed in the book often had a debt to retire or needed capital to start a business; marriage often necessitated a cash infusion. Donors often expressed mixed emotions about the procedure. Many got their money, fixed their financial issues, and moved on with no regrets, but some felt guilt or shame that they had to sell an organ to make their lives better.
Recipients sometimes formed bonds with their paid donors, but for the most part this was a market transaction that ended when it ended. Many stated that they preferred a paid donation to an altruistic one from a relative; the latter would have left them indebted for life, while paying cash let them feel the debt was paid. They could then move on with better health and less guilt.
The book can be a bit repetitive at times, but it paints a wonderful picture of a society and system we know very little of. As I watch my own patients on dialysis, waiting months for a deceased donor kidney, I wonder if the Iranians just might have a good idea. I recommend reading this work for a thought-provoking take on our organ donation system.
Oklahoma is recovering from an outbreak of Escherichia coli which has kept me away from the blog recently.
E. coli, as we usually call it, lives all around and in us. A good chunk of that microbiome we keep hearing about includes this bacteria. Most strains happily thrive in our guts, living a perfectly benign coexistence with us. At times they may find their way into our urine or other problematic place, but they can usually be rapidly dispatched.
Some strains produce a toxin first noted in the bacteria Shigella, thus named Shiga Toxin. Autocorrect on my iPhone wants to change "shiga" to "shiva." This may not be an error. This toxin causes incredible inflammation within the bowel. When the gut gets inflamed, it lets water and other material flow on through, producing diarrhea. In this case, the inflammation is so intense that the gut bleeds. A bloody gut produces bloody diarrhea. Nausea, vomiting, and intense cramping complete the clinical picture. This is a case of the runs you will never forget.
In a small number of cases of hemorrhagic colitis, the toxin enters the blood stream and produces a systemic response called a thrombotic microangiopathy (TMA for short). In tiny blood vessels throughout the body (capillaries), the toxin damages the inside. Platelets (oblong lavender thingies in the diagram) activate on these areas of damage to begin repairs. These tiny clots get bigger over time and form a mesh or halt blood blow to an organ, impairing or shutting down its function.
Not all organs seem as prone to TMA damage. The kidneys seem to provide a playground for the toxin and platelets; kidney involvement ranges from the trivial to irreversible infarction or scarring of the kidneys. This is why we call this TMA hemolytic uremic syndrome (HUS), uremia being another term for kidney failure. Other organs can be involved, including the brain, pancreas, liver, and heart.
Obviously the kidney provides a major clotting magnet, or I would not be discussing this entity. We do not really know why one child gets colitis and develops HUS while another gets just a horrible case of diarrhea. Using antibiotics and anti-diarrheal drugs during the colitis can increase the risk of HUS, but they do not explain it all.
Since this syndrome was described in the 1950's mortality has fallen from ~50% to <5% just with supportive care. Mortality generally is confined to patients with significant central nervous system involvement. Apparent kidney recovery occurs in 95% of survivors, although most will develop other signs and symptoms of chronic kidney disease over the decades.
Saturday evening I attended a very special event that I was banned from discussing until now.
In a children's hospital, you get used to celebrities doing things. Local personalities hand out goodies, making our patients and themselves a little happier in the process. Most of the time, they seem to target two patient groups. Premature babies get a lot of love, as do the kids with cancer. Other patients with chronic diseases receive less media attention. Kids with cancer might DIE! Children on dialysis will get transplants and be cured, right?
Not always. And a kidney transplant is hardly a cure, given life-long risks of immunosuppression.
I was delighted a few weeks back to hear that a local star wanted to do a party with our dialysis kids. Not only were they (finally) getting some special attention, but the celebrity would be my favorite OKC Thunder player, Serge Ibaka. My excitement was tempered by the fact that at first we nephrologists were not invited to the party.
I pouted a bit, but accepted my missed opportunity.
A few days later, I got the call that I could come. None of my family could come with me, but I was welcome to watch my patients interact and have some fun. I also was not to bring a phone or camera, although being on call meant I had to bring the phone. This loophole allowed me to take my completely unofficial illicit photo of the shot blocker at right. That's just the kind of rebel I am, folks.
The event took place in the hospital play zone. Each patient and their immediate family spent about 15 minutes alone with Serge (I shook his hand, I can call him that now, right?) and the kids got personalized Thunder jerseys, autographed in most cases. Then we all came together and he answered questions from the patients. After a group photo, he then shot baskets against the kids on an arcade basketball game (one girl even beat him; she is still glowing). Afterwards, he even posed for selfies with some of the teens. I have never seen such big smiles on the faces of these children; dialysis appointments rarely make you happy.
Things I learned or confirmed?
Saturday's event left me with such a happy feeling. I am hoping others will take on the fight for kids with less publicly emphasized disorders, including the drive to raise money for research and treatment. All children deserve to have their health struggles acknowledged.
Thanks, Serge. Now go block some shots.
Imagine your happy life with a loving partner, some happy children, and perhaps a pet or two. You have comfortable careers with healthcare coverage. You are not rich - losing a paycheck would be a big problem - but you do not feel insecure.
Now one of your children gets sick. Their kidneys have failed! In addition to learning about new drugs and diets and dialysis, you find out that your insurance has restrictions on specialty care. If you want them to pay for the surgery, then your child has to move to a contracted center in another state. Sure, your state has a hospital that can do it just 2 hours from home, but this is not the "preferred provider" so only 80% of costs will be covered. That means more than $20,000 out-of-pocket.
So how bad would living at the out-of-state center be? Since we are talking about a child, there will have to be a guardian of some sort with them. You will need to relocate to a strange location for weeks to months, leaving behind your support system. Of course, you cannot continue to work during this time, nor can you contribute to the maintenance of your family in non-monetary ways. Who will feed the dog? To top it off, your insurer will reimburse you for living expenses while out-of-town, but you have to pay to move and start a second residence out of your own pocket. Where do you get that money?
Well, Medicare also covers patients with end-stage kidney failure. You have worked and paid into the system, so your child is eligible...if you start paying Medicare premiums. There goes $800 each month to make sure your kid gets covered some way.
It's enough to break a family apart. Or enough to inspire a mother start a charitable organization.
The Stay of Hope Foundation will provide a number of services for children and families facing these medical and financial pressures. Beginning in Oklahoma (charity starts at home, folks) the foundation will offer advocacy in dealing with insurers and financial support for living expenses, Medicare premiums, and other out-of-pocket expenses. The group just got its LLC papers; as soon as we raise the application fee ($850) we will start the long and winding road to 501(c)(3) status! Eventually, we hope to offer services throughout the USA.
This scenario has occurred on a few occasions during the decades I have practiced, so when I heard about Heather MacDonald's new work I volunteered for their board. Forcing families under the stress of chronic disease to split geographically or face financial disaster seems unkind at best (mean, wicked, and grinchy come to mind).
I am supporting this group with my time and treasure and pride. More information can be found on the website, as can a Paypal donation button and an address for old-fashioned checks. As I noted, we do not have that 501(c)(3) status yet, but we are working on it.
So spread the word. Give if you can. And help families deal with that spot between the rock and the hard place.
It's time to pack up the laptop and other gizmos and head to the West Coast.
It's Kidney Week! Thousands of us with interests in urine and all things related will invade San Diego for science and debate and fun.
I will be tweeting from this meeting through Saturday, when I leave for San Francisco and the meeting of the Association of American Medical Colleges.
By the way, with eight days of travel and a black-tie event, I'm checking a bag. Just a couple of totes for the gizmos and meds, both of which will fit under the seat in front of me.
I also mailed my absentee ballot last week. If you don't vote, you aren't allowed to complain. And I do so like to complain...
The June 9 issue of New England Journal of Medicine includes a Perspective piece from a nephrologist and hospitalist at the county hospital in Houston, TX. They discuss an issue well-known to those of us in the nephrology community, the care of illegal immigrants with kidney failure. Kidney disease strikes a disproportionate number of ethnic minorities, including those of African, Hispanic, and Native American Ancestry.
US citizens qualify for public funding for their dialysis and transplants, either through the Medicare or Medicaid programs. Federal law prohibits the use of federal funds for non-emergency services for undocumented residents. Raghavan and Nuila describe the plight of these people:
Santiago is in the ER again. He sits in a special row of 20 patients, all of whom are waiting for one result: the potassium. Is it high enough today? Two days ago he was here, and it was only 6 meq per liter. We discharged him. Right now his chest hurts, and he is short of breath. Nothing new, and Santiago knows that if he's to be dialyzed today, these symptoms don't matter. Only the potassium matters.
Thrice weekly hemodialysis, the current standard-of-care for citizens, costs $72,000 per patient per year. Some would argue that this regimen is inadequate, that we should be providing more dialysis to improve patient outcomes, but many of these patients can work and live reasonable lives. Emergency dialysis for undocumented residents places the lives of these people at risk, as well as resulting in ER visits and hospitalizations for emergencies that must be paid for by our public hospitals (using local and state tax dollars and subsidized by increasing charges to other patients). Total costs average $200,000 annually for each of these emergency-dialysis patients.
My direct experience deals with the children without papers, who came to this country with their parents. Sometimes the families can save and fund-raise and get their children transplanted, although then they must bear the burden of the costs of immunosuppression for the rest of their lives. Sometimes good parents allow their children to become wards of the state so they can get the medical care that will give them better lives.
The examples that Raghavan and Nuila provide illustrate the problems of current policy. People who came to this country illegally, but to work hard to support families, can no longer work because of the inadequate care they receive for their conditions. This inadequate care not only prevents them from contributing to the economy via their work, purchases, and sales taxes, but ends up costing the public more than if we provided standard in-center dialysis. The authors admit that this issue "lies at the intersection of debates over the soaring cost of health care and the need for immigration reform."
Do we have an ethical duty to provide the same standard of care for all sick patients within our borders? Or would mandating the providion of health care (and of maintenance-dialysis treatments) create an incentive for illegal immigration and worsen the current situation?
There is no easy solution. But with this particular disease, there are cheaper, more compassionate alternatives...
They make an excellent case for the foolishness of our current choices. Should we let these people die of their disease? Should we continue to provide our current
torture care at almost 3 times the cost of standard care? Or can we come up with a more effective and cost-effective scheme for dealing with this problem?
Note: This article is not live on the NEJM site as I schedule this post; I will add a direct link to the text later on June 9. And that link is now live.
Last week I traveled to Denver for the Annual Meeting of the American Society of Nephrology, also known as RenalWeek. While there, I read an article in The Atlantic: "God Help You, You're on Dialysis," by Robin Fields of Propublica. The introductory excerpt:
Every year, more than 100,000 Americans start dialysis. One in four of them will die within 12 months—a fatality rate that is one of the worst in the industrialized world. Oh, and dialysis arguably costs more here than anywhere else. Although taxpayers cover most of the bill, the government has kept confidential clinic data that could help patients make better decisions. How did our first foray into near-universal coverage, begun four decades ago with such great hope, turn out this way? And what lessons does it hold for the future of health-care reform?
The article (and the extended version at Propublica) provide a scary view of the US end-stage renal disease program. Each dialysis treatment costs more in the US than in other industrialized countries, yet our patients suffer worse outcomes while on standard dialysis.
My personal perspective is a bit more optimistic; as a pediatric nephrologist, I am dealing with younger, healthier patients who usually get transplanted from a relative in a few months. If no living donor proves compatible, we usually pursue home peritoneal dialysis every night as the treatment of choice. In the adult world, the most common option is in-center hemodialysis for 3 sessions each week. From the standpoint of biochemical balance, each session should be 4 hours, although the justification for this schedule has more to do with resources than with outcomes. Many centers allow patients to run less time. Patients hate being tied to a machine for long hours, and the centers can then get the station ready for another patient. Economies of scale allow dialysis units to operate at a profit.
Perhaps giving patients more choice in their treatment options and letting market forces run wild is not the best way to provide health care. But I digress...
Kidneys control a number of bodily functions. In addition to fluid and chemical balance, they produce the active form of vitamin D; kidney failure causes significant bone issues without careful management. The kidney also produces erythropoietin, a hormone that tells the bone marrow to make red blood cells which carry oxygen to the body. When the kidneys fail, anemia can occur.
Dialysis and transplant are therapies that can extend life, but they are not cures for kidney failure. Nothing replaces the kidney quite like the original kidney.
That's why on Thanksgiving, I give thanks that I can pee. If I couldn't, the day would not be the same.
Two posts over on Stream of Thought show why the kidneys do a much better job adjusting the body's chemical balance than kidney specialists do.
How Kidneys Work illustrates the way the kidney first removes virtually everything in solution from the blood and then reabsorbs the 99% of the filtrate that it needs to stay balanced.
Today's post show how nephrologists, using two simple principles of general chemistry, attempt to replace kidney function- and achieve 10-15% of the clearance of these glorious organs.
Click on over; you get to see my video demonstrating diffusion and convection! Bring popcorn!
Once upon a time in nephrology, iron killed people. Today, it seems patients with kidney disease cannot get enough.
As dialysis became the standard of care for patients with end-stage kidney failure, it soon became obvious that the kidney was important in maintaining red blood cell mass in the body. Erythrocytes or red blood cells carry oxygen to the tissues; when lacking, patients have anemia. The kidneys provide most of the erythropoeitin in the body, the hormone that tells the bone marrow to make erythrocytes.
While dialysis kept patients with kidney failure alive, it could not produce erythropoeitin. Patients required periodic transfusions to avoid severe anemia. Soon it became clear that these infusions of red blood cells were also problematic. Many patients had a build-up of iron in various organs. Hemosiderosis could produce life-threatening toxicities in the heart and liver. To avoid these fatal complications, transfusions were withheld until hemoglobin levels fell quite low, to less than 8 g/dL (lower limit of normal 12-13 usually). If dangerous levels of iron accumulated, agents could be used to chemically bind and attempt to clear the iron with dialysis.
Work in the 1970s suggested that the kidneys made a hormone that controlled red blood cell production. The molecular structure of erythropoeitin (EPO) was eventually ascertained, and by 1985 production of the recombinant human hormone was underway. It received FDA approval for the treatment of anemia of end-stage renal disease in 1989.
A PubMed search shows that from 1950-1988 there were 702 publications when the terms "iron" and "dialysis" are searched. These focused on treatment of iron overload and various regimens for chelation therapy. When these same terms are searched from 1989 through the present, 2004 articles are found which focus on achieving adequate iron stores.
The majority of patients on chronic dialysis receive hemodialysis, in which blood is run through a pump-driven filter and returned to the body. Small amounts of blood are lost each time a treatment occurs, generally 3 times each week. Once EPO became available, this blood loss became critical. Patients often did not have the stores of iron to respond to EPO. Giving sufficient oral iron to overcome these losses is often impossible; gastrointestinal symptoms and interactions with other drugs get in the way.
Transfusion would be one way to get iron in intravenously; however, then the patient is exposed to the risks of blood. Intravenous iron preparations were dusted off for a new market. Iron cannot be given parenterally; the toxic iron molecule must be coated by a carbohydrate of some sort to prevent fatal toxicity. A number of preparations are on the market, with more on the way.
Anemia treatment guidelines for chronic kidney disease are undergoing revision; the new statement should be available in 2011.
For now, target hemoglobin levels are 11-13 g/dL; higher levels have been associated with excessive cardiovascular mortality. Transferrin saturation levels should be >20% for all dialysis patients, and ferritin levels should be >100 ng/mL for peritoneal dialysis patients who have minimal ongoing blood loss. Hemodialysis patients should have ferritin levels >200 but <500 ng/mL to allow optimal response to EPO.
I began my nephrology training in 1988, just before the approval of EPO. I saw the ravages of iron overload in my patients. Then EPO came along, and we could not only treat anemia without life-threatening complications, but we could also normalize hemoglobin levels. Patients felt much better, even though most claimed to "feel fine" at hemoglobin levels of 8 or 9.
I never imagined the volume of ads I would eventually see for iron products in my journals. The story of iron provides further proof that physicians have to remain life-long students, able to adjust to the changing body of medical knowledge.
Image courtesy of PhotoXpress.