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Living Donor Protections Living Donor Research Living Kidney Donor Psychosocial Risks

Resilience and Quality of Life in Living Kidney Donors

Resilience, according to various sources on the net, is described as an ability to recover quickly from misfortune, change or difficulty; moderating the negative effects of stress, and promoting adaptation.

 

In this study, 161 potential living kidney donors took the RS-13 (Short version of the Resilience Scale), which “measures the competence to moderate the negative effects of stress, and acceptance of life and self”. The prospective kidney donors had higher resilience scores than the norm. The 12 excluded potential living donors had resilience scores comparable to the norm.

 

For quality of life, the researchers “used the German version of WHOQOL-Bref, which includes four domains such as physical health, psychological health, social relationships and environmental conditions.”

“In all domains of quality of life, eligible donors had significantly higher values than the normative sample”

 

(emphasis mine)

Three months after donation health-related quality of life was significantly impaired in all domains compared to pre-donation values

“Out of the whole group of potential kidney donors (n=?161) 111 have undergone a nephrectomy. 41 (46.7 %) donors responded to follow-up questionnaires by mail*. Three months after donation, all domains of health related quality of life were correlated significantly with pre-donation resilience score”

“Our results indicate donors may have higher distress levels in the early period after nephrectomy. Psychosocial support may be most necessary at this point in time.”

 

One more note (emphasis mine):

“The authors reported emotional summary score for quality of life was lower in female donors, caused by a reduced role functioning. The world-wide higher incidence of depressive disorders in women may explain the differences. Women may be burdened by multiple familial role requirements in the context of donation, e.g. as donors and simultaneously as care giving marital partners. Nevertheless this finding requires further investigation and women should be regarded as a risk group.”

This echoes another recent study, which found that female living donors experienced greater fatigue, role function reduction and depression post-donation.

 

*Gotta wonder about that other half.
Erim, Y., Kahraman, Y., Vitinius, F., Beckmann, M., Kröncke, S., & Witzke, O. (2015). Resilience and quality of life in 161 living kidney donors before nephrectomy and in the aftermath of donation: a naturalistic single center study BMC Nephrology, 16 (1) DOI: 10.1186/s12882-015-0160-z

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Living Donor Research Living Kidney Donor Psychosocial Risks

Related Kidney Donors Need Aftercare and Support

This study from 2004, entitled “Psychological effects of living related kidney transplantation – risks and chances“, looked at 31 donor-recipient pairs. It concludes:

 

A. Living kidney donor transplantation is stressful for recipients, donors *and* their families,

B. The recipient’s post-transplant health affects the donor’s psychological well-being.

[Note: Yet another reason to focus on the quality of the transplant. Unfortunately OPTN’s Board of Directors has decided it wants to focus on quantity instead, in lieu of quality or patient and donor safety. See: January 2015 ACOT meeting materials]

C. It’s not advisable to go to transplant if the recipient-donor relationship is not a good one.

D. Living donors need support both before and after the transplant.

 

Reminder: The living donor psychosocial evaluation is a one-time event, and the purpose is to 1.look for signs of of payment and 2. rule out any major addiction or psychological issues requiring treatment prior to transplant. It is *not* to deal with any of the above noted points.

Transplants centers are not required to, nor do they, provide structured aftercare or support services for their living donors. The past and current living donor follow-up forms do not capture any information on a living donor’s mental health or well-being.

I’m always glad to discover a paper that adds knowledge to the living donor experience, but it saddens me to know that, despite these results, nothing has improved in living donor support care since its publication in 2004.

 

 

Heck, G., Schweitzer, J., & Seidel-Wiesel, M. (2004). Psychological effects of living related kidney transplantation – risks and chances Clinical Transplantation, 18 (6), 716-721 DOI: 10.1111/j.1399-0012.2004.00285.x

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Liver Donor Living Donor Misinformation Living Donor Research

Guess What Liver Donors – It’s All in Your Head!

I stumbled upon this by accident this morning while browsing for something else. Unfortunately I couldn’t access the entire text, but the abstract makes the point well enough.

 

12 live liver donors, 9 men and 3 women, were follow-up up at six months and one-year post surgery.

 

Results:
– Functional abdominal complaints (FAC) occurred in 11/12 at 6 months, and 9/12 at 12 months.
– Abdominal pain occurred in seven/12 and six/12 patients, respectively.
– Irritable bowel syndrome (IBS) was found in the majority of patients.

 

Conclusions (emphasis mine): FAC and pain seemed to indicate a general postoperative disorder, of a psychosomatic character, and not connected with removal of part of the liver and gallbladder in particular. However, the occurrence of IBS and FD should merit attention, as they are known to impair quality of life.

 

Just in case you missed it: even though 92% of the liver donors reported problems at six months, and 75% at 12 months, it can’t POSSIBLY be the result of the incredibly invasive and delicate procedure to remove 60-75% of the liver (and gallblader, according to the abstract). Of course not. It has to be imaginary, concocted, and made up. Because if it isn’t then we, the transplant industry, will actually have to start paying attention to these liver incubators as, you know, PEOPLE, and we wouldn’t want that now would we?

*head/desk*

 

Søndenaa K, Gondolesi GE, Roayaie S, Goldman JS, Hausken T, & Schwartz ME (2011). Functional abdominal complaints occurred frequently in living liver donors after donation. Scandinavian journal of gastroenterology, 46 (5), 611-5 PMID: 21114430

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Readers Corner

Readers Corner: Sybil Exposed by Debbie Nathan


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Sybil, published in the early/mid 1970s introduced society to the concept of multiple personality disorder, as well as the long-term ramifications of childhood abuse. The book was an overwhelming sensation, spawning a mini-series and a new therapeutic specialty. Problem is, according to author Debbie Nathan, the whole thing was pretty much a fraud.

For certain people, Sybil’s story resonates so strongly that no amount of ‘facts’ or ‘truth’ will sway their opinion. These people have taken to attacking Ms. Nathan: as unqualified (as if Flora Schreiber was any more of an expert when she wrote ‘Sybil’), for knowingly perpetrating errors, for judging Dr. Willis for using (at the time) acceptable treatment techniques, or for writing with an obvious agenda (again, as if Schreiber and were neutral on the topic). The only proof this book’s detractors seem to produce is “Sybil” itself, which was never fact-checked by the publisher (as the subsequent lawsuits illustrate), or an assertion of having DID/MPD (I have it, so it must be true!) ,or an alleged relationship with Shirley Mason (aka Sybil), which is quite convenient considering Ms. Mason can’t confirm or deny due to her pre-existing condition as dead.

The medical profession has a spotty history where women are concerned, and the advent of MPD (now known as Dissociative Personality Disorder) is no different. As we now know, boys and young men are not exempt from molestation and abuse, yet MPD/DID (as well as hysteria, and borderline personality disorder) are primarily women-only diagnoses. It is not unreasonable to question the origins and purposes of such labels, and such queries do not necessarily render the entire paradigm erroneous or moot. In other words, “Sybil” as fabrication does not negate DID/MPD as a real disorder.

Yes, Dr. Willis was a practitioner of her time, but paying Shirley’s rent, taking her on trips, allowing her to sleep over – those things were as unethical in the 1950s as they are now. She allowed Shirley to develop an unhealthy dependence on her, and despite evidence of falsehood and suggestibility, she continued administering barbituates and other ‘truth’ serums. Willis was a psychiatrist – a physician – she knew what drug addiction looked like, yet she watched Shirley’s function deteriorate and never questioned the role of the medications?

One undisputable fact is that Willis sold out her patient for the sake of Shreiber’s book. No ethical practitioner would ever have suggested she participate in such a thing, and no responsible journalist ever would’ve exposed a woman as fragile as Shirley Mason to the public in such a way. Yet they both did, and they profited greatly from it. Meanwhile, Shirley was hounded, lost her job, her house and her hard-fought independence and contentment in the world. And when the pressure mounted, Willis told her to cut all ties with her loved ones, which she did without explanation, much to their hurt and confusion.

In truth, I think it was unnecessary for Ms. Nathan to lump in the story of “Sybil” with 21st century attitudes toward DID and/or memories of childhood abuse. Yes, mistakes were made in the 1980s and 90s, but I’d like to think we’ve all learned quite a lot since then (and by ‘we’, I mean mental health practitioners, law enforcement, and the public). Nathan’s prior coverage of false memories clearly establish her opinions on the matter, and frankly, hurt her journalistic integrity in regards to “Sybil’s” veracity. It is the one weak point of her argument, and the one her detractors have successfully seized upon.

In closing, “Sybil: Exposed” is an worthwhile examination of mid-century gender struggles, evolving definitions and treatment of mental illness, and the power of narrative to affect change. Ignore the zealots and read it with those things in mind.

 

Categories
Ethical Considerations Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor OPTN Psychosocial Risks

Living Kidney Donors: Current State of Affairs

I ripped my blog title from the title of Connie Davis’ latest opus published in Advances in Chronic Kidney Disease, July 2009 issue. In her rather lengthy article, she attempts to consolidate an amalgamation of data and studies regarding living kidney donor deaths, complications and long-term health risks. In my opinion, she only does a so-so job, but considering she’s a high-ranking OPTN/UNOS officer, I shouldn’t be surprised she wouldn’t look too closely at the information she’s presenting.

I integrated a smattering of this information in the relevant areas of LD101.com but I thought I’d post some highlights (with my subsequent comments) here.

Death after living donation is quite rare, with the risk of death reported as 0.02% to 0.04% within 90 days of donation.

If you’ve been following this blog, you already know I’ve been having a discussion with some of my LD Advocate friends about so-called living donor mortality rates. What we’ve determined is that everyone quotes old statistics and no one is being honest with the real number of living donors deaths since OPTN began their database in 1988. Clearly, Dr. Davis is no different. The references she utilizes to support her ‘range’ are neither comprehensive nor reliable. She has access to every living donor death reported to OPTN; she could choose to make the information public, but she does not.

From the initiation of the United Network for Organ Sharing (UNOS) tracking of donor deaths in October 1999 through December 2007, 14 living kidney donor deaths (out of 51,153 donors, 0.03%) that occurred within 30 days of donation were reported to UNOS or identified by examination of the Social Security Death Master File.1,2 In 2008, 1 further death was reported. During the same time period (October 1999 to December 2007), 39 of 51,153 (0.08%) donors had died by 12 months after donation.

Problem one: UNOS does not have a database, OPTN does. Follow me if you can but OPTN is an agency under HRSA (which is part of DHHS), but HRSA has ‘outsourced’ the management of OPTN to UNOS. In other words, UNOS doesn’t have anything; they simply ‘administer’ OPTN.

Problem two: OPTN has been keeping a database since 1988. Why did Dr. Davis only choose to report LD deaths from 1999-2007? In addition, living donors have been used by the medical community for over 50 years – we have absolutely no data on the LD mortality w/i 12 months of those patients.

Problem three: foreign nationals who enter the U.S. for the sole purpose of being living donors (see: NJ Rabbi arrested for organ trafficking) do not have social security numbers so they cannot be tracked in the OPTN database.

Even though donors reportedly undergo a thorough evaluation before donation, some causes of death (eg,myocardial infarction, cancer, suicide, and homicide) within a short time after donation point to a need for programs to review their donor outcomes in the context of their program’s predonation medical and psychosocial evaluations.

Is she kidding? It is impossible to refer to transplant centers’ evaluations as ‘thorough’ when A. there are no quality controls or standards for pre-donation evaluations and B. at least one living donor committed suicide within 12 months of donation! What Dr. Davis should be saying but won’t because OPTN serves the transplant centers’ needs and not the public’s is that some living donor deaths were preventable and future deaths could be prevented if transplant centers actually did their jobs and evaluated prospective living donors in an ethical and real way.

In terms of the International transplant community, Dr. Davis asserts – the sense of long-term commitment to the living donor is growing.

Contrast this with the recent OPTN living donor committee report I read wherein it was discovered that despite a policy requiring transplant centers to submit follow-up forms for living donors at 6 months, one year and two years, the centers were labeling ‘many’ living donors as ‘unable to contact’ when there is no evidence they tried, and that transplant centers were submitting forms with one field filled out and getting credit for the form.

And OPTN is the agency responsible for ‘crediting’ the centers with submitting the form!

So really Dr. Davis, a ‘commitment’ to living donors?

What really troubles me, aside from the obvious omission of any discussion of living donors’ despression, anxiety, anger and PTSD post-donation (and believe me, that causes me great consternation) is the fact that Dr. Davis drops these facts, wipes her hands clean and walks away. She never, as they say, closes the loop.

– Some living donor deaths are preventable.
– Some transplant centers are not evaluating their prospective donors well enough.
– Living donors are at higher risks for end-stage renal disease than the general two-kidneyed population.

Yet she gives no analysis, evaluation or consideration of what these facts mean. She fails to offer suggestions on how to improve upon these deficiences, nor does she acknowledge OPTN’s role in the situation. It is as if she is saying, “Yeah, dead donors are bad ….. Anyone want a burrito?”

If UNOS wants dominion of all things living donation (or even if they want their contract renewed, or better yet, don’t want ’empassioned donors’ on their case), they need to stop hiding important facts from the public, stacking their committees with ‘pro-living-donation’ faces and censoring public-at-large members who dare to contradict their one-sided agenda. Instead of claiming the Washington Post used flawed data in their articles about inflation on the waiting list (ironically data that originated from OPTN’s own website), acknowledge and fix the damn problems.

Close the loop, Dr. Davis, close the loop.

Davis CL (2009). Living kidney donors: current state of affairs. Advances in chronic kidney disease, 16 (4), 242-9 PMID: 19576554