On the Personal Front

Left ya hanging on that Levey study, didn't I? Well, if you were resourceful and curious boys and girls, you probably dug it up yourselves by now. I apologize for the delay, I wlll get back to it eventually.


In the last month, I've had three deaths. My handsome of all handomes Dragon, a friend with a troubled past, and a member of my writers group. Needless to say, I'm tapped out on all the grieving and reminiscing and pondering of my own mortality. My coffers are on empty (literally; I just had a $1000 car repair bill).


And then there are the struggles to be an effective advocate. Know it or not, trying to change the world is a lot like swimming from Florida to Cuba: stressful, exhausting and full of hidden creatures that do their best to sting and maim you until you seek refuge in the boat. Part of the world thinks you're crazy, part of it watches in curiosity, and the rest flip the channel to NFL, NASCAR or American Idol.

I apologize for being vague, but I'm trying to maintain some dimension of professionalism. To know that your work (eg website) is responsible for a national media story, but have the reporter not bother to contact you? To have an editor request my recipient's permission to tell my living donor story? To have other folks dismiss me as a 'freelance writer' or 'LD with a website' when I, in fact, have a MASTERS DEGREE IN COUNSELING, run my own business, and single-handedly established the most comprehensive living donor resource available anywhere?

It's - um - it's maddening. I'm not even sure that's the right word.


So hey, I'm struggling. Welcome to the human condition. Hopefully I'll get a grip on it soon.

Readers Corner: The End of Everything by Megan Abbott

Full Disclosure: I read. A lot. A stupid, stupid amount. Not all of it is worth talking about. But some of it is.

Ordinarily I'd be hesitant to pick up a book about an abducted teenage girl, since the idea has spawned an entire subgenre of commercial mystery-thriller. I have no interest in following another damaged detective navigating a city's seedy underground (and their own personal demons) in search of a dangerous and unrepetant predator. The whole idea is as cliche as my previous sentence. However, Megan Abbott takes a cue from Alice Sebold, and gives us the perspective of the missing girl's best friend, setting the story in a time before cell phones, the internet and public service announcements about 'stranger danger'.

Lizzie, like all thirteen year old girls, is trying to make sense of the world around her: her mother's late-night visitor, the subtle changes in her best friend Evie, and the mysterious allure of Evie's seventeen year old sister. When Evie is abducted, Lizzie finds herself seeking the attention of Evie's father, and trying to earn his approval and love by helping to solve the crime of Evie's disappearance. The book, like real life, has no tidy ending, but a real one, reinforcing the underlying theme that a young girl's sexuality is never a simple thing.

Levey's Living Kidney Donor Transplantation in the US, part II

If you haven't, refer to Part I so you have some idea of what I'm talking about.


I want to back up for a moment and disclose that two of this paper's authors are, in fact, kidney donors. Their statement: "2 of us have donated a kidney to an unrelated
recipient".

But 'unrelated' is not synonymous with 'complete stranger'.

In one case, the author's husband needed a kidney so the author engaged in a kidney chain. While her organ technically was transplanted into a stranger, her motivation was to obtain a kidney transplant for her husband. The very same motivation for those of us who donate directly to a family member. This does not make her any more extraordinary than any other living kidney donor, and it does not make her opinion any more valid.

In the second instance, the author donated to one of her patients. While this may seem like a lovely gesture, it is, in fact, a violation of professional ethics. The intimate nature of helping professions (therapist, physician, etc) combined with the power dynamics of people in authority (teachers, clergy, etc) make adhering to strict boundaries incredibly important. It's the reason we judge those professionals who engage in sexual relationships with their patients/clients so harshly. It doesn't matter that donating a kidney was a helpful and positive act, it was still a blatant disregard for her professional boundaries. After all, the author only had one kidney to give. How will it affect her relationships with her other patients who were/are denied that kidney? Will she be willing to donate bone marrow to any patient in need?

Her decision to donate to her patient is problematic enough, but the fact that NO ONE in the entire transplant facility expressed opposition or concern, and actually CONTRIBUTED to this donation makes me suspicious of the facility's entire ethical foundation.


Now, back to the study....


Complications requiring surgical or radiologic intervention under local or general anesthesia occurred in 3% in 2 large series.

Two large series? Why didn't the authors just request the complication rate of ALL US living donors since 2000, when one-year of follow-up was required? Instead, they referenced a study on 1022 non-US living donors over the course of a decade. Compare that to the 6000+ living donors per year in the US. Their second is a single center look at only 750 LKDs. Again, why look at a single center when OPTN has info on all centers?



After kidney donation, measured glomerular filtration rate (GFR) decreases to 70% of predonation levels, and urinary albumin excretion is minimally increased, implying glomerular hyperfiltration and some increase in glomerular permeability to albumin in the remaining kidney.

Their reference for this statement is a study from 1983. Was there seriously nothing more recent and comprehensive?


These measures are not accompanied by complications or symptoms of chronic kidney disease.

No reference for this statement. What complications or symptoms are the authors referring to? And exactly what time frame are we looking at? Because we know that some LKDs have ended up with chronic kidney disease, end stage renal disease and kidney failure. So??


Survival appears better than for control populations matched for age and the absence of comorbid conditions that are regarded as contraindications to donation.

And here we are again, referencing the b.s. Segev study.



To be continued......






Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States-looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290

Mjøen G, Øyen O, Holdaas H, Midtvedt K, & Line PD (2009). Morbidity and mortality in 1022 consecutive living donor nephrectomies: benefits of a living donor registry. Transplantation, 88 (11), 1273-9 PMID: 19996926

Harper JD, Breda A, Leppert JT, Veale JL, Gritsch HA, & Schulam PG (2010). Experience with 750 consecutive laparoscopic donor nephrectomies--is it time to use a standardized classification of complications? The Journal of urology, 183 (5), 1941-6 PMID: 20303114

Physicians Remind Transplant Industry of Their Responsibility to Living Donors

I was researching the other day and ran into this letter from 2010, a response to a study by Maples regarding the risk of live donor nephrectomies. It pleased me so much, I wanted to share it here:

http://jme.bmj.com/content/36/3/142/reply

[emphasis mine]


The practice of living organ donation requires living persons to be willing to donate and medical practitioners to perform the surgical interventions. In the case of the vast majority of kidney donors, there is no doubt of their altruistic motives; indeed one could argue that donating their kidneys constitutes a supererogatory act on their part. The moral difficulty, however, lies with the medical practitioner performing an invasive surgical procedure to remove a healthy organ from a healthy patient. Najma Maple and colleagues [1] assume that just because the majority of persons are willing to undergo medical procedure x with risk y, their willingness implies that it is morally acceptable for medical practitioners to perform x. This implication is problematic. Living kidney donation not only results in the obvious effects of any surgery (post- surgical pain, lost work time, etc.), but also carries both short- and long-term health risks. Short-term risks for donors range from infection to bleeding up to death [for a summary, see 2]. Long-term risks include a rise of an average of 5-mm Hg of systolic blood pressure ten years after kidney donation surgery [3] (in one study, 37.5% of donors became hypertensive [4]), and kidney problems up to end-stage renal failure [4,5]. From a population health perspective, living kidney donors are at high risk of progressing to end-stage chronic kidney disease and ultimately requiring either dialysis or a kidney transplant over their lifetime. Effectively, living kidney donation practice can no longer be considered as solving but exacerbating a future epidemic of end-stage kidney disease in a population, and for society to deal with in 20-30 years later. This population health problem will amplify future crisis of kidney shortage for transplantation and burden an already strained health care system.

The principle of nonmaleficence (do no harm) forbids a medical practitioner from performing actions that harm the health of a patient. In the case of renal transplantation (and a fortiori, in cases of transplantation of other solid organs), the risks to the donor are significant. Even if nonmaleficence were considered to be a prima facie duty, the risks to kidney donors are too great for the good gained for the recipient to override this fundamental principle of medicine.

Michael Potts, Michael Potts, PhD, Professor, Methodist University, Fayetteville, North Carolina USA
Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, Mayo Clinic, Phoenix, Arizona USA
David W. Evans, MD, Queens College, Cambrige, UK

References

1 Maple NH, Hadjianastassiou V, Jones R, Mamode N. Understanding the risk in living donor nephrectomy. J Med Ethics 2010;36:142-7, doi: 10.1136/jme.2009.031740.

2 Potts M, Evans DW. Is solid organ donation by living donors ethical? The case of kidney donation. In: Weimar W, Bos MA, Busschbach JJ (Eds.), Organ Transplantation: Ethical, Legal, and Psychosocial Aspects, pp. 377-81. Lengerich: Papst Science Publishers, 2008.

3 Boudville N, Ramesh Prasad GV, Knoll G et al. Meta-analysis: risk for hypertension in living kidney donors. Ann Intern Med 2003;145:185-96.

4 Azar SA. Nakhjavani MK, Faragi A et al. Is living kidney donation really safe? Transplant Proc 2007;39:822-3.

5 Kido R, Shibagaki Y, Iwadoh K et al. How do living kidney donors develop end-stage renal disease? Am J Transplant 2009;9:2514-19.

George Carlin - The American Dream

Levey's Living Kidney Donor Transplantation in the US, part I

It's that time again, where I don't just read a recently published academic article, but dissect it and examine its tiny little pieces.


From the abstract: Our perspective is that altruism is the motivation for most living kidney donors and the decision to donate represents a shared responsibility among the donor, the donor’s physician, and the team of professionals at the transplant center. Thus, sound knowledge of the benefits and risks to donors and recipients is required for informed decisions, and all parties share in the responsibility for the outcomes after living kidney donation.



The authors compare the demographics of active wait list candidates with those of living donors*. Here are their thoughts: Although the difference in age is expected, the persistent differences in sex and race-ethnicity may reflect barriers to access to donation, particularly socioeconomic and cultural barriers.

This use of 'expected' in regards to the age difference between those on that wait list and LKDs made me chuckle. Expected by whom? And just because something is expected, does that make it ethical or right or fair?

After all, OPTN's own documents admit that organs (esp kidneys) from deceased donors over the age of 50 are being discarded unnecessarily. And based on the Joint Societies' LKD Evaluation Consensus Document, a "GFR of 85 would be of less concern for a 60 year old man, since that value is above average for that age and there is less remaining lifetime for GFR to decline. In contrast, the same GFR of 85 approaches two standard deviations below the mean in a 25-year-old donor."

So imagine if all those 50+ deceased kidneys were utilized, and older folks were encouraged to become living donors because they were at less long-term risk than a younger people. Would that change the 'expected age difference' seen here?

As for the sex and race-ethnicity discrepancy, remember that the authors are pushing for increased living donation, not donation in general. African-Americans have a much higher incidence of diabetes, diabetes has a high hereditary component, and diabetes is the biggest kidney killer out there. If living donors are supposed to be uber-healthy, why would the authors advocate that folks at risk for future diabetes and kidney failure give up a kidney? In fact, maybe that's part of the reason the percentage of African-American living kidney donors is so low. But instead of that possibility, the authors blame less education, lower income, and inadequate medical insurance. To their credit, at least they acknowledge that distrust in physicians is most likely a factor. Considering a lot of the stories I've heard from living donors, I'd turn that around and say that perhaps the problem is that whites trust in the medical community too much.



Back to the article: The criteria for kidney donation are designed to select medically and psychologically healthy donors with minimal short- and long-term risk for complications of the procedure.

Uh, except: A. There are no national standards in the US for living donor evaluation, selection, care or follow-up. And B. their reference is the 2000 Amsterdam Forum which NO ONE in the US adheres to. Yeah.



Extensive and detailed guidelines have been developed for the evaluation of living donors in general and specifically for unrelated donors.

A. Not true. They're incredible vague and generic.
B. Guideline = VOLUNTARY. There's no guarantee any transplant center follows any of them at all.


The short-term consequences of kidney donation are well known.

Wait - what? There is ZERO data prior to 1994, only death data from 1994-2000, and even though two years follow-up has been required since then, 40% of living donors are still 'lost' by one-year. That pretty much amounts to anything but 'well-known'.


Mortality within 90 days is 0.031% and has not changed in the past 15 years.

Let's start with all my prior posts on the living donor mortality rate shall we?
First
Again
Still More
Once More - With Feeling

And their reference? The infamous Segev article. Have a refresher.


To be continued.....








*In a post earlier this year, I compared the demographics of deceased donor organ transplant recipients with those of deceased organ donors.


Levey AS, Danovitch G, & Hou S (2011). Living donor kidney transplantation in the United States-looking back, looking forward. American journal of kidney diseases : the official journal of the National Kidney Foundation, 58 (3), 343-8 PMID: 21783290