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Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor

No folks, it’s not as easy as “save a life, get a new belly button”

So a transplant surgeon is using the pages of The Atlantic to promote living donation.

You know, five years of this BS has been exhausting. No matter what seems to happen, the transplant industry keeps perpetuating the same recipient-centered propaganda and the media complies without question. I’ve lost count of how many reporters I’ve contacted about stories like this, how many publications I’ve tried to interest in what’s happening to living donors out there. None of them seem to care.

It’s acceptable to write about the government’s failure to care for returning veterans and how many are committing suicide, but it’s somehow blasphemy to utter any sentiment that might make living donors less than angelic heroes who skip merrily off into the sunset. We can’t say anything that might jeopardize the ever-continuing flow of kidneys for the would-be recipients.

 

As a matter of fact, I am angry,  how can you tell?

 

Anyway, here’s the comment I posted on the article:

 

Mezrich is incorrect that donors are evaluated “very carefully”. Until 2013, there were NO national standards of care for living donors. OPTN tried to implement such standards in 2007, but the transplant industry violently rejected them. It was only after years of pressure from the federal government (Dept of Health and Human Services) that they relented and passed the minimal and vague standards we currently have.

His assertion that the risk of renal failure for LKDs is also incorrect. Kidney donors who’ve been wait listed are 17-20 years post-donation. On this study, maximum follow-up was 15 years, and median follow-up was only 7.6. It simply doesn’t capture the true occurrence.

LKDs are supposedly “healthier” than the general population, so if their risk factor is equal to that of gen-pop post-donation, then kidney donation *does* in fact increase the risk of renal failure. But renal failure is not an LKDs only health risk.

A 10% reduction of kidney function is known to significantly increase one’s risk of cardiovascular disease and death. LKDs experience a 20-40% loss. At 10 yrs post-donation, half of Sweden’s LKDs are hypertensive or have cardiovascular disease. And that’s in a country with a longer life expectancy, healthier lifestyle and universal health care.

What Mezrich doesn’t say is that between 2000 and 2009, 4.4 living kidney donors died in the US every year within one year of donating. 20% of living donors experience physical complications, some of which are painful and chronic. 20-30% suffer from depression, anxiety, anger, grief and/or PTSD. Yet the transplant industry has no psychosocial aftercare available.

He also neglects to mention that we have NO COMPREHENSIVE SHORT OR LONG TERM DATA ON THE HEALTH AND WELL BEING OF lIVING DONORS. OPTN’s database was deemed “useless” for analysis or research in 2009, and even now, 35% are “lost to follow-up” by one year post-donation. (btw, this is the database used in the referenced study)

Mezrich purposely uses inflated wait list statistics. 1/3 of the wait list is “inactive”, meaning they couldn’t undergo a transplant even if an organ became available. 15% of the wait list at any given time has had at least one prior transplant.

According to USRDS, the average age of end-stage renal disease in the US is 64.4 years of age. 44% of ESRD is caused by diabetes, and another 26% by hypertension. Mezrich is WRONG that the “only” solution is to increase living donation. In fact, the only real method of reducing the need for donor kidneys is to invest in robust prevention and treatment programs.
Finally, I’d like to know if Dr. Mezrich has a donated a kidney. It seems reasonable that if he’s going to ask others to relinquish an important organ, he should be willing to do the same.

Categories
Living Donor Misinformation Living Donor Protections Living Donor Risks Living Kidney Donor

Proteinuria in living kidney donors

While this letter to the editor is from an Iranian transplant surgeon, therefore his prime intent is to defend Iran’s legalized kidney market (which is indefensible, imo), he makes some interesting statements about proteinuria in living kidney donors:

It is of interest that Gordon and Gill [1] explained some causes of microalbuminuria in living donors after nephrectomy such as inadequate pretransplant evaluation and conditions related to the poverty of unrelated donors. However, most reported data suggest that proteinuria increased in the living kidney donor population, and the prevalence of microalbuminuria in living donors varied from 11.5% to 34% in different studies [3, 4]. In addition, a study showed that 56% of 152 donors developed mild proteinuria (>150?mg/day) [5]. One meta-analysis demonstrated that the average proteinuria was 154?mg/day and concluded that kidney donation results in small increases in urinary protein [6]. The suggested causes of proteinuria postnephrectomy were subclinical hyperfiltration damage of the glomeruli, hypertension and a lower glomerular filtration rate.

Finally, it is generally accepted that all kidney donors should be screened for microalbuminuria at 2- to 3-year intervals postkidney donation because albuminuria has been illustrated as an appropriate indicator of kidney damage in the context of nephrectomy.

Notice the “generally accepted” part – accepted by whom? OPTN policies don’t reflect this, and neither does the official position of the US transplant industry. If proteinuria (and albuminuria is a protein), which is indicative of renal damage, is GENERALLY ACCEPTED by the medical literature and therefore, medical community, why aren’t prospective living donors informed as a matter of course?

Categories
Living Donor Misinformation Living Kidney Donor

Weill Cornell Medical College’s Living Kidney Donor Resources, part i

Google Alerts dropped Cornell’s website into my inbox recently (which means they must’ve updated it).

First is this, the typical pro-living donor propaganda we’ve come to expect, which includes:

The majority of studies have found that:

– The risk to a donor’s physical health is minimal in both the short-term (surrounding the surgery) and long-term (in terms of kidney function, high blood pressure, and the donors lifespan).

– Kidney donors tend to have higher quality of life scores after donation, as compared to the general population.

– Donors have similar or improved psychosocial health after donation.

– The overwhelming majority of donors would choose to donate again.

 
 
Unlike every other transplant center website I’ve seen, Cornell has a link to a page they call “Living Donor Reference Center” which purports to provide references for their overly positive statements.
 

The first link “Consensus Statements/Guidelines for Living Kidney Donation” contains the Consensus Statement on the Live Organ Donor, an international document from 2000.

Then they list OPTN’s “Guidelines” for the medical evaluation of LKDs (Cornell erroneously contributes this document to UNOS). Unfortunately as of the beginning of 2013, those voluntary recommendations have been replaced with bondafide mandatory standards of care. Incomplete and vague standards of care, but required, nonetheless.

Finally is a 2007 article authored by Delmonico, among others, with guidelines on the psychosocial evaluation of unrelated living kidney donors.
 
I’m guessing Cornell wants anyone who stumbles upon this website to believe they follow these documents when dealing with prospective and current living donors?
 
 

Under “Medical Outcomes and Complications” the first two articles listed are the infamous studies by Segev and Ibrahim. Since I devoted an earlier post to how flawed these studies are, and how their results have been manipulated by those who want to promote living donation over the health of actual living donors, I’ll just leave this link here for your perusal.

(Two more of their references are also by Ibrahim. Considering his blatant bias in the NEJM article stated above, his credibility is pretty much shot everywhere else).
 
Next they list Connie Davis’ “Living Kidney Donors: Current State of Affairs” from 2009 – when she was a high-ranking UNOS/OPTN officer. I wrote about this when it was published, but here are the problematic highlights:

– Mortality (death) rate is underestimated/reported.
– Her statistics are not comprehensive (only cover certain portions of OPTN’s data collecting existence)
– Transplant centers have been woefully non-compliant with reporting living donor data, so all stats must be considered under-reports.

 
Right now I’m unable to procure the entire Najarian essay, but from the abstract I can already see a few flaws (oh and btw, it’s an opinion piece):

A. single center (This results in certain patient demographics. Also, since no standards of LD care existed prior to 2013, how patients at one center are evaluated would be different than LDs at another),

B. longevity as “proof” tha living kidney donation is safe (LKDs are *supposed* to be healthier than the general population. They *should* live longer than folks with rampant, chronic disease),

C. they compared the LKDs with their nondonor siblings (there’s no way to know if the nondonor siblings would’ve qualified as LKDs, or if they are/were as ‘healthy’ as the donors).

A nephrologist I know called the Najarian piece “self-justifying” and “unable to distinguish between causality and association”. Also, the Swedish studies he mentions don’t show casuality.
 

Garg et al. is a meta-analysis, meaning they grabbed all existing studies that met a certain criteria and tried to crunch them. It only looked at proteinuria, which is only one of many symptoms linked to long-term cardiovascular and/or renal problems. The studies only averaged seven years after donation, which is paltry when the average US living kidney donor is 41yoa at the time of donation.

(and btw, the meta-analysis did find increased proteinuria in LKDs)
 

Barri’s publications characterize him as a guy who doesn’t believe that living kidney donors, even with the required GFR (renal function), should be classified as having chronic kidney disease. This particular article simply compared LKD’s pre-donation and THREE MONTH post-donation GFR to determine how many would be less than 60, or otherwise Stage 3 CKD. I’m not sure why Cornell would link it, other than to say “We provided info that it’s ‘common’ to have Stage 3 CKD qualifying GFR post-donation!”
 

Hartman et al. is about the first 1600 living kidney donors recorded in the Norwegian registry. Norway has universal heath care and healthier lifestyle and longer life span than the US, so any long-term results should be viewed with caution (although this paper has no long-term statistics, despite what the abstract claims). Also, we have no way of knowing how Norwegian evaluation and care compares to that of the US.
 

Okamato, et al. refers only to the mortality (death) of one Japanese transplant center’s living donors over the span of 35 years. 1. We have no way of knowing how this center evaluates their LKDs, or if that evaluation has changed over the course of 35 years. 2. Japan’s lifestyle is much different than the US. 3. The study looks at 601 LKDs; the US has approximately 6000 LKDs per year.

In other words, these results (which really aren’t that significant on their face) have no comparison to the US at all.
 

Soneji, et al is another article that simply looked at other existing studies. It was published in 2008, so all the studies it covers are prior to that year. In other words, some of their data might be outdated. In fact, their section on LKDs with renal failure *is*, very much so.

The authors do not claim to have looked at *all* relevant studies, which means they very easily could’ve cherry-picked the ones that further their “living donation is low risk” conclusion. Also, their definition of long-term is approximately 10 years. When the average US LKD is 41 years old, 10 years only covers a percentage of their expected post-donation lifespan.
 

The last study cited in this section, Gossman et al, is also covered in the preceding Soneji, et al. It was published in 2005 and only covers a single German transplant center: 152 LKDs (70% female) from 1973-2001. So again, we don’t know how their LKD evaluation compares to that in the US, but we do know that Germany has universal health care, and a healthier lifestyle and a longer lifespan than the US.

Categories
Advocacy Follow-Up Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

Marketing Masquerading as Journalism

If there’s one thing the Cleveland Clinic is good at, it’s self-promotion. And in the past couple of years, they’ve used The Plain Dealer’s Angela Townsend as their messenger (via cleveland.com). Here’s the latest:

http://www.cleveland.com/healthfit/index.ssf/2013/09/cleveland_clinic_researchers_s_1.html

 

Excerpts:

“…analyzing health data from more than 69,000 living donors from 1998 to 2010″

” Complications declined over time, from 10.1 percent in 1998 to 7.6 percent in 2010.” <- Reported complications (see comment below)

“The rates of complications and length-of-stay for donors were comparable with other relatively low-risk abdominal surgeries that required the removal of an organ, such as appendectomies.” <- Hey, news flash: a kidney is NOT an appendix. Folks *use* their kidneys!

“Depression, hypothyroidism, hypertension, and obesity increased slightly over time” <- three years, at most, of data, remember.

 

Below is the comment I left on the article:

 

So much about this press release from the Cleveland Clinic is misleading. At most, the authors had three years of data on the living donors, but more likely they had one year on 2/3 and two years on less than half of their sample.

I know this because even the data retrieved from SRTR is gathered by OPTN and even though *all* transplant centers should follow-up on *all* LDs for two years, more than 35% of LDs have no follow-up reported at one year (per ACOT). Two-year follow-up falls to 40+ percent. In fact, OPTN’s own living donor data taskforce called the OPTN database ‘woefully incomplete’ and ‘useless’ for research or analysis past 6-weeks post-donation.

But even if they had two year of data on 100% of living donors from 1998-2010, it says nothing about living donors’ health and well-being ten, twenty or more years post-donation. Since 1993, more than 400 living kidney donors have been waitlisted in need of their own transplant, approximately 17-20 yrs post-donation. In addition, a 10% reduction in kidney function significantly increases one’s risk of cardiovascular disease, events and death. LKDs lose 20-40% of their pre-donation kidney function.

Living donors’ struggle with depression, anxiety, anger, grief and/or PTSD post-donation has been documented in the academic literature for some time. What’s disappointing is that no transplant center, including the Cleveland Clinic nor Beth Israel engage in any preventative measures or offer structured support services or aftercare post-donation.

As the sister of a kidney transplant recipient, I understand the importance of donor organs. But as a living kidney donors, I find this constant minimization and manipulation of donor risks to be unethical and dangerous.The public should not be medical supply. Living donors are people too.

www.livingdonor101.com

 

[PS. I know that Angela Townsend has the contact information for local truly independent living donor advocates/activists. She simply chose not to seek their opinion on this]

Categories
Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

Risks of Being Born With Solitary Kidney

When the long-term risks of donating a kidney are discussed, too often someone will bring up that folks born with one kidney are ‘fine’. So I wanted to share this:

 

Children with a solitary kidney (SK) have an increased long-term risk of hypertension, albuminuria and glomerulosclerosis.

 

A two-kidneyed person relinquishing a kidney is not different, in terms of these risks. That’s because renal reserve, nephron count and kidney function plays a role in those above factors. The problem is that potential living kidney donors aren’t educated about what kidneys actually *do* or what the affect will be when one is removed.

Emphasis mine:

Among our patient cohort, renal function was well preserved at ages 4–15.5 years in children who were born with a SK [solitary kidney]. However, both their higher blood pressure and RI [resistance index of arteries. This refers to arterial hardening] and the correlation of 24-h albumin urinary excretion with length of follow-up time underline the need for monitoring to detect early signs of glomerular hyperfiltration and, if necessary, implement timely intervention. SK hypertrophy was found to be correlated with postnatal growth.

 

 

http://link.springer.com/article/10.1007/s00467-013-2623-4

 
Ekaterini Siomou, Vasileios Giapros, Frederica Papadopoulou, Maria Pavlou, Andreas Fotopoulos, Antigoni Siamopoulou (2013). Growth and function in childhood of a normal solitary kidney from birth or from early infancy Pediatric Nephrology DOI: 10.1007/s00467-013-2623-4