HemoDoc, From Doctor to Patient

Death by Organ Donation? - Opening Pandora's Box

By Peter Laird, MD

A friend recently sent me an article from the Wall Street Journal about organ donation and allegedly losing autonomous rights by signing an organ donor card. Initially, my first impression fell in line with the majority of comments to this article that this could damage the fragile organ donation system we have in America. However, using this commentary as a basis for further investigation, there is much in the commentary that should become part of the organ donor discussion of today:

What You Lose When You Sign That Donor Card

Becoming an organ donor seems like a win-win situation. Some 3.3 people on the transplant waiting list will have their lives extended by your gift (3.3 is the average yield of solid organs per donor). You're a hero, and at no real cost, apparently.

But what are you giving up when you check the donor box on your license? Your organs, of course—but much more. You're also giving up your right to informed consent. Doctors don't have to tell you or your relatives what they will do to your body during an organ harvest operation because you'll be dead, with no legal rights.

The most interesting and controversial evidence noted in this commentary is a reference to a medical report from 1999 by an anesthesiologist that records three instances of failure of the brain death criteria including one "donor" who had his organs harvested even though he had spontaneous respirations and movement at the time of organ removal contrary to accepted brain death criteria. (here) Even more troublesome are the collections of patients who have been declared brain dead by accepted criteria to subsequently survive and in some cases recover completely. (here)

 

Pronounced dead, man takes 'miraculous' turn

Some four hours after doctors declared Zack dead, a nurse began to remove tubes from Dunlap. His cousins, Dan and Christy Coffin, both of whom are nurses, were also in the room. Something about Zack’s appearance made them think that he wasn’t as dead as the doctors said. On a hunch, Dan pulled out his bone-handled pocket knife and ran the blade up the sole of one of Zack’s feet.

‘Our son is still alive!’ 
The foot yanked away, but the other nurse said it was a reflex action. So Dan Coffin then dug a fingernail under one of Zack’s nails. Zack yanked his arm away and across his body, and that, the other nurse agreed, wasn’t a reflex action. It was a sign of life.

“We went from the lowest possible moment to, ‘Oh, my gosh, our son is still alive!’ ” said his mother. “That was the most miraculous feeling. We had gone from the lowest possible emotion that a parent could feel to the top of the mountains again. We were still very guarded, because we weren’t sure what his prognosis would be, but just to hear the words that he was back with us is something we’ll remember forever.”

Doctors warned the family that Zack could have profound brain damage that would prevent his leading anything resembling an active life. But within five days he opened his eyes, and 48 days after the accident, he walked out of a rehab center and returned home, where the entire town gave him a hero’s welcome.

He’s working to regain his memories and to control his emotions, and he’d like to go back to his job as a warehouse worker. He also wants to get his driver’s license back.

“I’ve been wanting to drive [from] about the day I was back from rehab,” he said.

At Morales’ request, Zack reached in the pocket of his jeans and pulled out the pocket knife his cousin had used to prove he was still alive. Dan Coffin had given it to him as a gift and a memento.

“It makes me thankful that they didn’t give up,” Zack said, turning the knife over in his hand. “Don’t let the good die young.”

Shortly thereafter, he showed signs of breathing and brain activity. A few months later, this young man sat in my office with his father as they related the story. The strangest aspect of the entire story was his statement that he had his death certificate at home with him. He made a full and total recovery with no deficits whatsoever and returned to military duty as a computer specialist.

A second case I was involved with as a resident in training for my internal medicine career was that of a young woman who had an anoxic event (lack of oxygen) of unknown duration. I remember becoming involved with the case as a team of doctors tried to persuade the family that she was brain dead and to withdraw care. They refused and continued a vigil of prayer and support continuously. A couple of days later, the nurses began to tell us that the patient was moving spontaneously yet none of the physicians ever observed that in our brief visits. Things changed when the patient woke up and began breathing spontaneously without the ventilator.

One of the most poignant encounters I have ever had with a patient occurred about six months later when this same young woman walked back into the intensive care unit to thank all of us involved in her care. She did have a permanent brain injury resulting in complete blindness, but before me was the most grateful patient I have perhaps ever encountered in my entire medical career with expressed joy for her second lease on life even with the blindness. I am not sure how much her family related to her on the urgent meetings to withdraw care by the same team of doctors she was now thanking. It is a moment I shall never forget considering how close she had been to death by organ donation.

The demand for well preserved and intact organs for those also in desperate need is well documented with available organs only a fraction of those on the waiting list. Nevertheless, as great as the benefits of cadaveric donation, over forty years after the Harvard criteria for brain death came into existence, protocols vary from hospital to hospital and state to state. In the last decade, to accommodate this growing demand for organs, standards have been loosened to increase available donors with extended donor criteria and those patients with cardiac deaths instead of brain death. Just one case of mistaken brain death diagnosis should give us all pause to consider not only our own loved ones in need of a new kidney, heart, lung or liver, but to hold fast that we would never see even one case of death by organ donation. 

In the zeal to secure higher quantities of viable organs, we must first remember the dictum to do no harm. Fortunately, the cases of incorrect diagnosis of brain death are quite rare, but at the risk of making any error, the certainty of brain death must be considered an area where caution is in order. Anyone that listens to Zach's testimony of remembering being declared brain dead I am sure will consider that the Wall Street Journal commentary is an important dialogue to continue despite the fact it will most certainly be an unpopular and controversial endeavor in the renal community. The integrity of the organ procural system must be maintained at the highest levels of ethical donation, otherwise we risk losing the support of the community, further increasing the waiting times for transplant and the inevitable death toll that will likewise follow.

Altruistic Donor Leads 60 Person Transplant Chain

By Peter Laird, MD

Altruistic renal donation is the underlying ethical framework for our current donor system in America. Many have prematurely declared altruism dead, but the news highlighted in the New York Times speaks loudly that we have yet to see the full power of a complete stranger willing to offer himself as a gift of life. In this case, it started a chain that will now benefit over thirty renal transplant recipients. His story is worth sharing and extolling the benefits of altruistic donation.

60 Lives, 30 Kidneys, All Linked

What made the domino chain of 60 operations possible was the willingness of a Good Samaritan, Mr. Ruzzamenti, to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self- interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies. Their loved ones, in turn, were offered compatible kidneys as part of the exchange. . . 

Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said.

Dr. Montgomery is correct that kidney chains have the potential of transforming the field, but they all begin with a complete stranger willing to give of himself for nothing in return but a scar. The miracle of altruistic donation should never become too frequent to celebrate each and every sacrifice instance. Thank you Mr. Ruzzamenti, you have done well.

Expanding the Renal Transplant Donor Pool: How Far is too Far?

By Peter Laird, MD

The renal transplant waiting list in the United States continues to increase exponentially while the available living and deceased donors stagnates behind this growing demand as seen in this graph from the US Department of Health and Human Services HRSA. News accounts of fathers and mothers giving kidneys to their children make headlines on a routine basis. The news of the so called "gift of life" from renal transplant supersedes any like acknowledgement of nocturnal home hemodialysis which has outcomes equal to cadaveric transplant. Yet, the march to procure even more kidneys is leading America down the path of ethical quagmires as the demand continues to expand the donor pools by ever loosening criteria. A little over a decade ago, the solution for many was the new expanded donor criteria (ECD) where donors previously excluded as "marginal" for HTN, age, diabetes, risk of infectious disease transmission and or malignancy as well as other criteria are now grouped into the ECD category. Most transplant centers now offer shorter waiting times for patients who will agree to the ECD criteria by an informed consent agreement.

Patients waiting for renal transplants faced with nearly ten years on the list now opt more frequently for expanded criteria donors making this the fastest growing segment of available renal donors. Another method of expanding the donor pool is a new criteria of death aside from the standard brain death criteria ushered in during the 1960's. In the 1990's, transplant centers began using donation by cardiac death (DCD) either by controlled DCD by withdrawing life sustaining care, or from uncontrolled emergency room cardiac deaths. Many ethicist have spoken out against this type of donation since the controlled donation by cardiac death occurs before brain death in some instances. Both ECD and DCD cadaveric transplants are increasing dramatically.

Expanded donor criteria may in the end prove more costly for several reasons. First, ECD grafts must undergo extensive testing to assure that they are free of infectious agents easily transmitted by transplant and other tests that add to the direct costs of each transplant. In addition, because ECD and DCD grafts fail to last as long as standard criteria donors (SCD), transplant patients can expect more complications and difficulties with a new organ adding not only to the burden of care, but also the burden of further pain and suffering that these failures bring about.

In my opinion, the most troublesome aspect of the expanded donor criteria is the inclusion of donors at high risk of transmissible agents including HIV and Hepatitis. Today, our testing cannot exclude all new cases of these viruses prior to the donor mounting an immune response to these agents which can take weeks in some cases. The feared transmission of HIV with this new criteria happened in 2007 leading many transplant surgeons to restrict the use of high infectious risk donors in their programs:

High Infectious risk donors: what are the risks and when are they too high?

RECENT FINDINGS: HRD organs are discarded at a higher rate than non-HRDs, and many surgeons have decreased the use of HRDs in response to a recent widely publicized case of HIV and hepatitis C virus (HCV) transmission. Special informed consent use can mitigate legal risk and might increase provider comfort with HRD utilization. Nucleic acid testing (NAT) mitigates infectious risk by decreasing the window period, particularly for HCV in which the risk of undetected window period infection decreases by an order of magnitude. Estimated risk of undetected window period HIV infection varies by HRD behavior category (range 0.035-4.9 per 10,000 donors when NAT is used), HCV risk is higher (range 0.027-32.4 per 10.000).

SUMMARY: Given long waiting times and high wait list mortality, organs from HRDs can be used to expand the organ supply. Estimates of HRD infectious risk can be used to guide patient and provider decision making.

Patients need to know and understand well all of the terms used in transplant programs today what the meaning of ECD and high risk donors (HRD) who include IV drug users, hemophiliacs, prostitution history, high risk sexual activity, exposure to HIV and jail sentencing.  The CDC considers all of these donors high risk and following testing in transplant recipients for HIV and Hepatitis is now standard transplant follow up. The tragedy of four patients hoping for the gift of life in 2007 to only find out a new fatal disease is part of their medical fight should make us stop and consider how far is too far to expand donor criteria. The even more tragic sense of this epic story is that few patients are counseled that nocturnal home hemodialysis has the same survival benefit as cadaveric transplant.

When seeking renal replacement treatment (RRT) options, the patient must realize that all treatment options are not equal especially when evaluating the use of extended donor criteria. The hope of "the gift of life" should not end tragically with a new disease added to their burden. For those that are willing to take these risks, then they must fully realize all of the criteria and all of the terms used. The "gift of life" may not be what it seems as time passes.

I believe that America needs to return to a more sensible realization that the supply of available kidneys will not keep up with the exponential increase in demand for kidneys.  I believe that the real hope for the majority of ESRD patients in America will be an expansion of home dialysis options. So far, the dialysis industry has done little to expand the pool of available home dialysis patients or reduce costs. It is time for a paradigm shift and return to optimal standards for all RRT options including renal transplant lest history record that we have expanded the criteria too far.

The New Renal Transplant Allocation System: No Elderly Need Apply

By Peter Laird, MD

The current system for allocation of available cadaveric kidneys for transplant is undergoing intensive revisions by the Organ Procurement and Transplantation Network (OPTN). Under consideration is how to match the best available donated kidneys with the patients who have the greatest expectation of longevity. Early, OPTN considered using age matching as one criteria to allocate kidneys, but after legal review, the committee felt there could be legal challenges based on the Age Discrimination Act. The results of such an approach could have an effect on the number of patients over the age of sixty five that would be eligible of for the transplant list:

OPTN/UNOS Kidney Transplantation Committee, Report to the Board of Directors, November 2011 

The Committee then examined results from a prior simulation run that did not include age matching (Exhibit A).  Run 37 used the current kidney allocation rules with a few modifications (use of dialysis;time instead of waiting time and inclusion of the A2/A2B rules).  Run 37 also included longevity;matching for the 20% longest lived kidneys (as approximated by kidney donor profile index [KDPI]);which were allocated first to the 20% of candidates with the longest potential survival (as approximated by estimated post transplant survival [EPTS]).

The results from Run 37 indicate that the distributions would be similar to those currently observed for race/ethnicity, degree of HLA mismatch, and blood group. There was a slight decline observed in the proportion of transplants for highly sensitized candidates. Similar to other proposed approaches, the proportion of transplants for older candidates also declined, though not as substantially. A representative from the Ethics Committee remarked that this decline is ethically acceptable as everyone who is old had a chance to be young, but not everyone who is young will have the chance to be old.

Several respected transplant nephrologists and surgeons have spoken in opposition of the proposed allocation system including Dr. Lainie Friedman Ross and Dr. Benjamin Hippen:

How Not to Assign Kidneys

Giving more organs to young recipients would also come at the expense of “older” recipients, which in this context can mean 50 to 64. (Only a tiny fraction of all kidneys go to recipients older than 70.) Since older candidates on the waiting list are less likely to live long enough to receive a kidney, making them less eligible for transplants will probably result in more deaths on the list, and more pressure on available living donors to donate to older candidates.

The new proposed renal allocation system comes at at time when some investigators are reevaluating whether age alone is a factor that precludes benefit. A recent study out of Johns Hopkins found in carefully selected patients over the age of sixty-five that there were significant benefits. With over half of the ESRD population in this category, few are aware that this new policy could reduce the chance of even having a living donor transplant by not being referred for evaluation in the first place:

Thousands of Seniors Lack Access to Lifesaving Organs, Despite Survival Benefit

The Hopkins investigators estimate that between 1999 and 2006, roughly 9,000 adults over 65 would have been "excellent" transplant candidates and approximately 40,000 more older adults would have been "good" candidates for new kidneys. None, however, were given the chance.

"Doctors routinely believe and tell older people they are not good candidates for kidney transplant, but many of them are if they are carefully selected and if factors that really predict outcomes are fully accounted for," says transplant surgeon Dorry L. Segev, M.D., Ph.D., an associate professor of surgery at the Johns Hopkins University School of Medicine and leader of the study being published in the January issue of theJournal of the American Geriatric Society. "Many older adults can enjoy excellent transplant outcomes in this day and age," he says, and should "be given consideration for this lifesaving treatment."

Since the initial public outcry when the new allocation system first came to attention, little is heard any longer on the status of this proposal. For half of the ESRD population in the elderly category, geriatric patients may wish to become more involved. After all, even when patients have health insurance and a willing donor, recent news confirms that there is no guarantee that the patient will be accepted for transplant. In a time of organ shortages, short sighted ethical perturbations will not help the system or protect those that they allegedly are designed to protect. It is time to bring this discussion back to the public where it belongs.

First Do no Harm: The Living Renal Donor Dilemma - Dr. Brenda Mayne's Story

By Peter Laird, MD

There is nothing more tragic than outcomes that happen to you personally. Doctors are fond of statistics when discussing the risks and benefits of any given procedure, but statistic fail to take into account the fact that when an adverse outcome does occur, it is an 100% occurrence for that individual. Renal transplantation is universally heralded as the best option for renal replacement therapy for those with ESRD especially with a preemptive transplant from a living donor. Sadly, the donors story is seldom followed more than a few months.  There is no registry to follow these patients to know the outcome of that donation. Dr. Brenda Mayne placed a comment on my post: First Do no Harm: The Living Renal Donor Dilemma, where among other things, I reported on the very first renal transplant that succeeded in this nation with the Herrick twins. I would urge all to consider not only her personal story, but to also note an interesting historical fact about the first transplant donor that I was completely unaware.

As a living donor 8 months out from surgery, I am horrified at my own lab values (GFR = 34) and what I see as my transplant center's blase assumption that I would be fine despite
predonation eGFR = 67. As a 49 year-old woman, I am now facing a lifetime of kidney disease. During screening, transplant staff repeatedly asked if I was clear on how serious the donation would be, but when I asked exactly what it would mean for my health every staff member told me that living donors - particularly white women like myself - had no difficulties. No one shared my questionable labs with me - or with my recipient who now has a lower GFR than she had prior to transplantation.

The article above describes Ronald Herrick, the first living kidney donor, as having an "exceptional" life; it fails to mention that Herrick spent the last decade of his life in ESRD and on dialysis. In reporting his death from cardiac failure, the connection between kidney donation, kidney disease, and cardiac disease is not mentioned.

Until Nephrologists step up as a profession and demand strict criteria for living donors, living donation is dangerous and unethical. Criteria should include screening by outside nephrologists; my screening was done by the nephrologist who follows the Transplant Center's recipients. Criteria should include an estimate of the amount of renal capacity expected to be lost over the donor's lifetime with criteria adjusted so that younger donors are protected. Criteria must use realistic expectations for the donor's ability to hyperfiltrate/hypertrophy. My center told me, after surgery, that they expected me to compensate 100% - at age 49! Criteria must also include assessment of the other organ systems affected; nephrologists can inform both professionals (surgeons) and patients of the multiplicity of ways the kidneys affect the body - rather than simply producing urine. You have more patients than you can care for as a profession. Protect us, the living donors, so that there are not more patients like myself.

Brenda Mayne, Ph.D

The untold story today is that of the living renal donor, before they donate and after when most are lost to follow up within  1-2 years of their surgery. An even more forgotten group of people that we almost never hear about are those patients that die from the donation procedure itself:

Living Kidney Donor Death/Mortality

The notes from the August, 2010 ACOT meeting include a statement by Dr. Feng of the Cleveland Clinic Foundation regarding "four reported deaths in kidney donors this year in the U.S." While some would argue that not all living donor deaths are the result of the procedure, Feng is referring to those which have been attributed to the surgery itself. He also said, "The fact that there were four kidney deaths with almost no publicity is...problematic." (171) We agree.

American nephrology is emerging as a house of cards when we consider the lack of true informed consent on home hemodialysis options and on the risks of renal transplantation and living renal donation. (here, here, and here) When I was entering the confines of the world of ESRD, the mantra I heard over and over again was I had to have a transplant from my entire nephrology medical team and essentially every one of my colleagues in the Internal Medicine and Family Practice departments. I only had one nephrologist in the last two years of my illness prior to initiating dialysis discuss the home dialysis option as a primary treatment option. He likewise discussed preemptive transplant in his consultation as well, but it was his information that started me down the path of home hemodialysis. Dr. Belding Scribner summed up true informed consent as well as I have heard in 1965:

“The adjustment and rehabilitation of patients with any chronic disease are improved by giving them a full explanation of their disease and its treatment and as much responsibility for their treatment as they can accept” 

Belding Scribner, 1965

I diligently researched the extensive risks of renal transplant especially in light of my prior cancer history. I had a testicular cancer in my 3rd year of medical school coupled with radiation treatments prophylactically which was the consensus in 1989. I was advised that my risk of cancer nearly recurrence 20 years later was negligible. On my own insistence, I requested a dermatology evaluation understanding the increased risk of skin cancer post transplant and that is when they discovered a very early malignant melanoma.  With two cancer scares in my life completely cured  by early surgical removal, I am not willing to add any further increased risk of future cancers from the immunosuppressive regimen after transplant.

Even prior to withdrawing from consideration of the renal transplant list, belatedly after I had already had a colonoscopy and cystoscopy as part of my transplant evaluation, I had decided to fore-go a preemptive transplant offered to me by my wife and daughter. My wife has had HTN, elevated cholesterol and some issues with borderline elevations of glucose on a couple of occasions and at the age of 50, I believed she would still need all of the renal function that she could retain for her own health. My daughter had yet to have any children which she has now had her first and a second is on its way now. Dealing with pregnancy and a reduced GFR places both the mother and her child at increased risk. I determined that renal disease was my burden to bare and I would not place another healthy individual at risk for what is my disease after all.

In addition to my recognition of the risks of transplant and the risks of donation for my loved ones, I became aware of the data for daily dialysis showing equal outcomes compared to cadaveric renal transplant. Pauly et al demonstrated this in a widely publicized paper in 2009. Unfortunately, the majority of patients are told that transplant has superior survival to dialysis, which is only true if comparing to in-center dialysis alone. When evaluating short daily dialysis and daily nocturnal applications,  Pauly presents data that should also be presented to all living donor candidates as well as trasnplant candidates so that they can compare the benefits of more frequent dialysis directly with transplant:

Survival among nocturnal home haemodialysis patients compared to kidney transplant recipients

Results. The total study population consisted of 177 NHD patients matched to 1062 DTX and LTX recipients (total 1239 patients) followed for a maximum of 12.4 years. During the follow-up period, the proportion of deaths among NHD, DTX and LTX patients was 14.7%, 14.3% and 8.5%, respectively (P = 0.006). We found no difference in the adjusted survival between NHD and DTX (HR 0.87, 95% CI 0.50–1.51; NHD reference group), while LTX survival was better (HR 0.51, 95% CI 0.28–0.91).

Today in the glamorous world of high tech renal transplants broadcast almost daily across this nations televisions stations, I would hope that Dr. Mayne's personal testimony of the harm done to her by the lack of informed consent and what would appear to be the doctor's zeal to proceed  even when his patient before him already had CKD-2 prior to donation. With the medical community continuing to push the envelope of living donor criteria, it is sobering to note the great harm done to a vibrant professional at the peak of her career. It is equally sobering to learn a new facit to the story of the first renal donor and his own struggle with ESRD.  It is time to re-examine the ethics of nephrology that fails so many patients by not giving them all of the information needed to make a true informed consent. It is time, my fellow colleagues in nephrology to first, do no harm.

First Do no Harm: The Living Renal Donor Dilemma

By Peter Laird, MD

Renal transplant offers the benefits of increased survival, normalized diet and life style and freedom from the burdens of dialysis. Since the first successful renal transplant in 1954 when Richard and Ronald Herrick, living donor renal transplant is the recognized gold standard renal replacement therapy for patients with ESRD. Many of the early renal donors have enjoyed long, healthy lives after donation. Ronald Herrick is no exception. He lived to the age of 79, dying in 2010 from complications of heart surgery.

Initially, candidates for renal donation underwent stringent physical examination and had to be free of any chronic illness that could lead to renal disease or cardiovascular complications. Today, as the demand for renal donation increases and is popular in the press and television news stories, criteria for renal donation is now much more relaxed. Early studies of the safety of renal donation appear to imply normal or even longer than average survival compared to the general population. The difficulty is that no one has a complete record of all renal donors since they are not followed in most centers past the first year. Some new data is now showing a significant decline in renal function in the first year after living renal donation that gives pause to the rush to increase this source of renal grafts:

Renal Function Declines in Living Kidney Donors

At one year post-nephrectomy, 131 (78%) donors had a 25% or greater increase, 27% had a 50% or greater increase, and 31% had a 0.4 mg/dL or greater increase in plasma creatinine compared with their pre-donation values.

In addition, the researchers found an association between mean arterial pressure (MAP) and a plasma creatinine rise of 25% or greater one year post-nephrectomy. Each 1 mm Hg increment in MAP at the time of donation was associated with a 6% increased risk of having a 25% or greater increase in plasma creatinine.

“There are few data addressing post-nephrectomy kidney function in contemporary living donors,” said Julie Lin, MD, MPH, FASN, senior author of this study. “We were surprised to find that relatively high proportions of donors met established clinical definitions for lower kidney function whereas the general expectation has been for higher levels of recovery at one year. Donors deserve quality information on the expected course of kidney function change after nephrectomy.”

The entire debate over payment for renal vendors is predicated on the belief that living donation renders no harm to the donor. The evidence from the illegal black markets from poor renal donors in Pakistan, India and Iran is far from reassuring with no net financial benefit to these people after loss of ability to work is calculated into the final analysis. Ronald Herrick gave his brother the gift of life and both lived exceptional lives.  However, in an open, regulated, legal market for renal donors, many will be motivated by the immediate financial reward without much thought on how it may change their own health and well being. For the 1 out of 3000 that die during renal donation, no amount of compensation accounts for their loss. 

The irony of continued calls for payment for renal donation is that we are now finally seeing the true promise of altruistic renal donation where many transplant chains are initiated by an altruistic donor. The power of love for our fellow man is the true message of the Ronald and Richard Herrick story. The power of the love of money by starting a regulated open market tempers the historical relevance of this truly modern medical miracle. The simple truth is that no regulated market will ever meet the demands of our nation that has so dismally failed to prevent obesity, HTN and diabetes that all lead down the path of end stage renal disease. Until these public health epidemics are controlled, the contrivance of a regulated organ market will be little more than a band aide at best, but it may also be the opening of Pandora's box. As in all things, first, do no harm.

 

Facebook Unites Renal Transplant Patient with Donor

By Peter Laird, MD

Social networking entered a new sphere of influence when Roxy Kurze,  a young wife concerned over her husbands kidney failure sent a plea for a kidney to fall from the sky over the popular Facebook network. Amazingly, in less than an hour Ricky Cisco, essentially a complete stranger with only the briefest of acquaintance a year earlier replied wishing to donate his kidney.

Need a kidney? Michigan man finds one on Facefook

A 35-year-old Michigan man, Jeff Kurze, desperately needed a kidney. So he and his wife decided to use technology and social networking to get one. He posted his need for a kidney on Facebook and found a willing and compassionate donor in the name of Ricky Cisco.

On March 30, 2011, one of Cisco's kidneys was transplanted into Kurze at Beaumont Hospital in Royal Oak, Michigan. They are both in good condition following the transplant.

 

The level of care noted in this latest altruistic donation lends the conversation to pronounce altruism alive and healthy in this nation despite many pundits alarming propositions that it is dead and not enough. It seems that nearly every week, an altruistic donor who are often complete strangers stands in the gap of available donors and gives of their own self. Often, this is in conjunction with the newly popular renal transplant chains.  The story of finding a renal transplant through Facebook underscores the need for renal donation as well as the simple fact that there are people willing to give the gift of life if they can only become connected. I suspect that this will become a new tool improving renal donation rates.

Transplant Surgeons Changed Practice after HIV/HCV Transmission Case

By Peter Laird, MD

In 2007, the news that four patients received HIV/HCV contaminated tissues from a high risk organ donor rocked the transplant medical community which still affects decisions on donors today.  One of the patients who received a kidney transplant sued because she was not informed that the donor was a high risk patient.  Unfortunately, even though the donors tests were negative for HIV/HCV at the time of donation, his high risk behaviour as a 38 year old gay man led to an undetected infection which he passed on to the recipients of his organs. The publicity surrounding this case still governs transplant practices among many of the nations transplant surgeons.

Transplant Docs Change Practice After HIV/HCV Case

In 2007, transplants from a single high-risk donor transmitted both HIV and hepatitis C to four organ recipients, despite negative antibody tests before the procedures. The case made national headlines, Segev and colleagues noted, and sparked a debate about informed consent and testing for HIV. . .

To see what effect the case had, Segev and colleagues surveyed transplant surgeons across the U.S. between Jan. 17, 2008, and April 15, 2008, getting responses from 422 surgeons in current practice.

Of those, they found, 297 reported using high-risk donors, but 31.6% changed practice after the 2007 event. Specifically:

• 41.7% of those who changed decreased use of high-risk donors.
• 34.5% increased the emphasis on informed consent.
• 16.7% increased use of nucleic acid testing.
• 6% implemented a formal policy.

In this specific case, CDC guidelines on high risk donors were over looked when the patients were not informed of the donors high risk status.  The patient that sued after her renal transplant had previously turned down an earlier transplant because the donor was likewise high risk.  In this case, the transplant surgeons were all aware of the donor's status but did not pass that information on to the patients.  All four recipients later turned positive for both Hep C and HIV, the first such documented transmission in 20 years.

Transplant Patient a 'Mess" after HIV Diagnosis

CHICAGO — A woman in her 30s who is one of the four organ transplant patients infected with HIV and hepatitis was not told that the infected donor was high risk, and had previously rejected another donor "because of his lifestyle," her attorney said.

Attorney Thomas Demetrio filed a petition Thursday in Cook County Circuit Court on behalf of the woman, asking officials to keep a hospital and an organ procurement center from destroying or altering any records involving the donation.

"She's really a mess right now," Demetrio said of the Chicago-area woman. "She's still in shock."

In the rush to increase organ donations, taking shortcuts on any aspect of this care is paid in the end analysis by the unfortunate patients who learned that their life saving transplant gave them two deadly viruses at the same time.   The current caution on the part of transplant surgeons who have changed their practice standards because of this case is prudent and should be encouraged. Throwing caution to the wind is a losing strategy in any situation, this one turned out to be tragic.

Learning by Osmosis in Renal Dialysis Centers - Where is the Informed Consent?

By Peter Laird, MD

Renal replacement options include transplant but many patients who suffer from anemia while on dialysis have had blood transfusions that produce antibodies that reduce the possibility of ever having a successful transplant. However, a serendipitous insight by a Cedar Sinai doctor led to the current treatment protocol with IVIG. I came across an interesting video detailing one patient's story of how IVIG has helped her and the laymen account of IVIG that is actually quite informative by her mother even if she does get a few details not quite right.  It is also quite informative about in-center dialysis and what happens to an other wise healthy young woman who only recieved 3 hours, thrice weekly dialysis.  No wonder people have such a negative view of dialysis:

 

The story of saving the government billions of dollars and the fact that they only pay for meds for three years after a transplant I am sure are part of the reason for such a push towards renal transplant by the government.  Thankfully, IVIG now offers patients with high PRA the chance to go forward with "the gift of life" for a transplant.  Medscape had a recent review on how IVIG works in this situation.

Intravenous Gammaglobulin (IVIG): Clinical Use of IVIG in Kidney Transplantation

Data from our group and others suggest that IVIG therapy given to highly sensitized patients results in reduced allosensitization, reduced ischemia-reperfusion injuries, fewer acute rejection episodes and higher successful long-term allograft outcomes for cardiac and renal allograft recipients. We and others have confirmed that pre-treatment with IVIG results in reductions of anti-HLA antibodies, and is effective in treatment of allograft rejection episodes.

Unfortunately, the manner in which the patient in the video above heard about plasmapharesis was from a concerned nurse and she then did an internet search finally finding a doctor who stated, I have something better than plasmapharesis, I have IVIG. It is not simply optimal dialysis that patients do not hear about in dialysis units as apparently neither the mother or the patient were ever aware in this video, but also the different transplant options as well.  This patient had only 3 hours thrice weekly dialysis which by many studies does place her at high risk of complications and death as was rightly stated. The issue of informed consent for dialysis patients is well documented for the lack thereof as this case all to well demonstrates.

Learning by "osmosis" about the type of treatment that ultimately gave this patient hope is an all too common story in the dialysis industry. (InformedConsentRLockridge.pdf) IVIG is one of the true wonder drugs of medicine used for many autoimmune diseases that is now one reason more patients are now candidates for this renal replacement option, but it is a quite sad commentary that patients have to luck upon information of this type on their own in many cases.  Sadly, the patient in this video has an undo impression of dialysis from her individual undertreatment.  I would hope patients in the future will not go through her poor treatment, but sadly we have not yet addressed optimal dialysis issues in-center in this country.  We still have much work ahead of us.

Arizona Medicaid Refuses to Finance "Questionable" Transplants

By Peter Laird, MD

The NYT featured an article today on a recent change to Arizona Medicaid funding that will no longer finance certain transplants deemed not to be cost effective.  The transplants in question are liver transplant for Hepatitis C, some bone marrow transplants, pancreatic transplants and lung transplants.  However, for the patients recently dropped from the transplant lists, this decision will mean a certain death sentence. Even heinous murderers are granted automatic appeals all the way to the US Supreme Court taking decades to result in an actual execution, yet for some involved on the wrong side of this decision, their death sentence will in some cases be a matter of days or weeks.

Arizona Cuts Financing For Transplant Patients

State Medicaid officials said they recommended discontinuing some transplants only after assessing the success rates for previous patients. Among the discontinued procedures are lung transplants, liver transplants for hepatitis C patients and some bone marrow and pancreas transplants, which altogether would save the state about $4.5 million a year.

“As an agency, we understand there have been difficult cuts and there will have to be more difficult cuts looking forward,” said Jennifer Carusetta, chief legislative liaison at the state Medicaid agency.

The urgency of many of the required transplants to sustain life is not mitigated in my opinion by the savings of 4.5 million dollars.  With all of the documented waste in government, sentencing needful patients to death should be the last resort of budget cutting tactics.  The ethics of this decision are based on an assessment that many of these transplants such as a liver transplant for Hepatitis C are ineffective according to Arizona State Medicaid officials.  Many transplant experts dispute these claims.  The larger issue for patients on dialysis is how shall we fair in the cost cutting back room deals of politics where many dialysis patients have annual bills over $100,000 for years on end. What hard choices will the dialysis industry face in the future?